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Autoimmune Rippling Muscle Disease

frostage 1 post Jul 11, 2006 1:31 AM	Hello all I started out 8 months ago with a wave like rippling of my muscles which are electically silent according to the EMG. I have a major weekness in my muscles as the day goes on, trouble swallowing etc etc, which my neurologist beleives is MG. Although my cat scan showed no abnormalitiy in the thymus, and my pottasium voltigated test came back negative. However rippling muscle disease is either genetic or caused by the thymus. I know its not genetic. I am basically asking is there anyone out there with similar problems who could give me any advice or knowledge of what i am going through. Phil
chairman MGA Chairman 232 posts Jul 11, 2006 3:15 AM	Phil There is an auto-immune disease called acquired neuromyotonia which causes muscle TWITCHING; it can be (rarely) associated with MG. However this should show up on an EMG test. ---------- Peter Finney MGA Chairman Last Edited chairman on 11-Jul-2006 3:16 AM
frostage 2 posts Jul 11, 2006 5:03 AM	Hello Peter I new i would be interesting as my neurologist calls me so. Thank you for your reply. when i first went to my consultant he initially thought it was neuromyotonia. However with neuromytonia the contractions are specifically electrically active. My contractions are electrically silent, which defines rippling muscle disease. I have a mildly elevated creatine kinase level which is not in accordance with the genetic version and is related to some form of abnormality of the thymus. According to the limited information i have found out, neuromyotonia is rare however i come under the catagory of very rare. The majority of site's i have been on mentions all the various autoimmune responces due to abnormal thymus and MG, with exception to RMD. The few sites i have found mention RMD but are basically being brief about the subject. Some people would think it is great having a rare disease, but when the consultant is having trouble finding an answer and im worn out by just doing a little work especially with my muscles moving all the time its like being in hell.
kathyroo 31 posts Jul 11, 2006 5:19 AM	Phil, I can't imagine how uncomfortable you must be. It's great that your doctor is working so hard to find out what's wrong. Are you on any medication that helps at all? I found this website: www.rarediseases.org. There is a category on the left-hand side that says rare disease database. I went through a huge list of rare diseases to rule them out, so I could help my doctors figure out what was really wrong with me. (my doctor says this will give you med student syndrome LOL) After 8 years, I am finally going to see a neuromuscular disease specialist. Good luck to you! Keep us posted. Kathy
frostage 3 posts Jul 11, 2006 3:31 PM	Hello kathyroo Thank you for your reply. I have tried the website you suggested however im still unlucky and have found no references to the disease. The medication i have been put on is gabapentin, which does help a little. Unfortunatly it has a side affect with me which some people do get is that. My short term memory is affected. I can tell the same person the same story twice within 10 minutes and cant remember the first conversation. I know age can do this to you but im only 33. The neurologist is now writing to my Gp to prescribe pregabolyn, which will help me more without the memory loss, so fingers crossed.
Liz181 147 posts Jul 11, 2006 4:31 PM	Phil Have they ruled out MG then? Liz
MikeV 2 posts Jul 12, 2006 8:10 AM	Do you currently take Mestinon? My muscles ripple and look like one of those movie aliens is trying to escape whenever I don't eat enough when I take my Mestinon. While uncomfortable and a bit disturbing to look at, it hasn't caused any major problems.
frostage 4 posts Jul 12, 2006 4:14 PM	Hello Liz181 no they havent ruled out MG they apparently are considering it although the consultant beleives that its possibly down to the Gabapentin tablet. Hello MikeV At last i have met an alien like myself, please tell me more. My muscle in my bicept ripples (for instance) from my body side to the outer arm not as people would imagine from the shoulder down to the elbow. The muscles affected seem to be almost everyone with exception to my calves and tricepts. What has excited me is the mention of food, yes when im hungry my rippling is at worst and about 1 hour after i have eaten the rippling relaxes to almost gone. Please please please tell me more. phil Last Edited frostage on 12-Jul-2006 4:17 PM
JohnnyG 121 posts Jul 14, 2006 3:11 PM	Frostage, Afraid I also seem to have memory problems these days, so it has taken me a few days to recall where I heard about rippling muscle disease -- I think it was at the MGA day in Oxford where Professor Nick Wilcox spoke about neuromuscular issues in general and mentioned a couple of interesting cases of rippling muscle -- afraid my memory is failing me here on the details, perhaps someone else here can help out? John ---------- Kildare, Ireland
frostage 6 posts Jul 15, 2006 5:24 PM	John Thank you very much for replying to my problem, perhaps i need to find a way in which to contact this professor. MG is a rare disorder in terms of how many people know about this problem. My neurologist has told me the condition i have is extremely rare. To some people being rare is a desire however to myself with this condition its a living nightmare, combined with the fatigue i experience. I celebrated on thursday 8 months of hell. The new tablets are better but i have an issue with my neurologist where he says that should it be proved to be conclusively autoimmune then, he can give me tablets to control the problem, i imagine immunosuppresants. His responce to a thymectomy was. (well you would have a scar). In the vain hope of a normal life i dont care whether the scar started at my big toe and ended at the top of my scalp.There is an old saying no pain no gain. Phil
Liz181 153 posts Jul 15, 2006 5:30 PM	Phil Could you not insist on being tested for MG? Have you looked through the info on MG on this website, Nick Wilcox features. You're right about it being rare which is a real pain, I don't know where you live but you do have the right to be referred elsewhere if you are not happy, you can contact your local PALs (in your hospital) who will advise. I threw a bit of a temper tantrum the other day when a registrar said this was one of the most interesting cases he had seen, I don't want to be interesting and I have found it difficult sitting in front of some doctors knowing more about the condition than they do. Liz
vickinok 1 post Jul 16, 2006 11:09 PM	My son has a possible MG diagnosis with possible second and third issues. A Pediatric Developmental doctor believes the second is possibly Rippling Muscle Disease (RMD), his Neurologist believes he possibly has Epilepsy and Sleep Apnea. Symptoms in 08/2005 included weakness (severe); dizziness/vertigo (room spinning), constant; double vision, constant; vomiting, seizures, charlie horse in legs every few minutes –stiffening- changed to complete body stiffening; blurred vision, on again, off again; aches in hands and feet, tingling sensation, on again, off again; chest pains, on again, off again; concentration problems; paralysis; difficulty swallowing; difficulty breathing; trouble sleeping; muscle ripples; tremors. Symptoms now: trouble sleeping; breathing difficulties, using oxygen every day (not really helping since he is having trouble sucking in air and pushing it out); weakness; tremors; muscles rippling, can even see it myself; double vision, on again, off again; vertigo, on again, off again; swallowing difficulties, constant. He was given three AChR tests, four EMG's, three LP's, four MRI's, three MRA's, one CT, one Anti-MUSK (still waiting on results), numerous blood tests, one muscle biopsy (still waiting on some results), and one nerve biopsy (still waiting on results), five EEG's, two EKG's, two Echocardiogram's, one Dysphasiagram, oh and one Tensilon test. I think that's all... Given that we had numerous Neurologists, some that ran tests, some that didn't and went by other Neuro's tests, we had trouble getting a diagnosis. It took my son going into seizures and once at the hospital, demanding a new Neurologist (prior ones, and there were several, decided that he had a mental disorder) or we were taking him home, that we now have a wonderful Neuro that believes my son is really suffering from a physical problem and started looking at running new tests. He decided to try Mestinon (30mg 3x's/day) as a test and my son's overall strength was better after 24 hours. However, my son again had symptoms that progressed requiring another hospital stay on Father's Day and being intubated. He was there for eight days (three on a ventilator) and they then did more MRI, MRA, EMG, Echocardiogram, EEG, AChR, Anti-MUSK, LP, muscle and nerve biopsy, and a Dysphasiagram, then ordered an at home sleep study for Sleep Apnea. When you're diagnosed with Acute Respiratory Failure, they tend to take you seriously.... Most of my son's tests have come back normal. We are still waiting on some of the results, BUT, the Dysphasiagram (which he had never had done before) indicated a weakness in the throat muscles causing swallowing difficulties. So between our new Neurologist (aquired in April after hospital stay) and the new Pediatric Development doctor (aquired after Father's Day hospital stay), we are waiting for these tests to come back and find out if we have a confirmed diagnosis of RMD, MG, Sleep Apnea, and who knows what else. Last Edited vickinok on 25-Aug-2006 8:45 PM
frostage 7 posts Jul 17, 2006 2:26 AM	Hello Vickniok I am so sorry to hear about the problems you are having with your son, i myself have a 2 year old and the thought of something minor being wronge with him frightens me to death, i wont even think about serious. Your son seems to have a multitude of problems and i can only hope that its something that is very very treatable. My rippling muscle disease is a the primary problem, i do have throat swallowing problems, breething problems (which is'nt shortnes of breath) and fatique at specific time like you wont beleive. The test to confirm RMD was an EMG which showed the rippling to be Electrically silent unlike neuromyotonia. With regards to your sons medication you have mentioned mestinoned, As per levitas Pyridostigmine prevents the breakdown of acetylcholine in the neuromuscular junction. Acetylcholine travels across the space to the muscle-fiber side of the neuromuscular junction, where it attaches to many receptor sites. The muscle contracts when enough of the receptor sites have been activated by the acetylcholine. Pyridostigmine allows more acetylcholine to remain at the neuromuscular junction longer than usual so that more receptor sites can be activated. More acetylcholine in the neuromuscular junction results in stronger muscle contractions and less MG weakness. Pyridostigmine does not cure myasthenia gravis but does help to improve the symptoms. . However my neurologist prescribed me origanally gabapentin, which is used for epliepsy, muscle cramps, muscle rippling amongst other things. For me gabapentin did reduce significantly the rippling however i could not go onto higher doses due to a common side affect that i was losing my memory. I have since been put on pregabolyn which is a new version of gabapentin. I dont seen to have the side affects anymore however my ripplin muscle's are virtually gone. I am only at half the recommended dose at present as i have to increase slowely but it has made a significant improvement to my well being as i am not constantly reminded about my problem. Although it is wronge to self prescribe i strongly advise you to ask your neurologist about trying gbapentin/pregabolyn. Not only will it hopefully help with the rippling but also with the epilepsy. I really really hope that you have some success like i have had along this path. It is'nt a cure but life is more bearable now. Phil Last Edited frostage on 17-Jul-2006 3:43 AM
frostage 8 posts Jul 17, 2006 3:49 AM	Hello Levitas Thanks for the correction. As you can see the correction has now been made. Phil
MikeV 4 posts Jul 17, 2006 7:51 PM	Frostage, Like I said, it is most active when I don't eat enough with my Mestinon. The worst outbreaks (for lack of a better term) are when it affects my tongue, but most of the time it's pretty much confined to my calves. It's both neat to look at and a bit greusome at the same time. My kids love watching my tongue when it starts to ripple.
MikeV 7 posts Aug 01, 2006 7:37 PM	I have taken a video of what this looks like on my leg. I haven't captured my tongue going wonky yet but I will eventually. If you want to see it, the link is below. It's on my My Space page under vids. I've also been keeping a blog strictly about my MG which I started back in May of this year. http://www.myspace.com/oefje
SharonS 64 posts Aug 02, 2006 3:26 AM	MikeV and all, Mike,I have just had a look at your video of your rippling muscle and it is definitley looking the same as a video that I believe Dr Hilton Jones showed us at the Oxford conference as per earlier posting. He said that he had not come across many cases of this 'rippling muscle' condition but showed it of an example of another neuro condition. Maybe yourself and frostage should get in touch with him. I am sure he would be interested! Sharon 40yrs old Genralised MG North London
MikeV 8 posts Aug 02, 2006 6:22 PM	Thanks Sharon, I'll have to see if I can get ahold of the good Dr.
frostage 12 posts Aug 03, 2006 3:48 PM	Hello Mikev Thank you for the time and effort. I cannot say enough how much i have appreciated the video you have done. We are coincidently the same age. The rippling you get is really similar to mine. However your spasms seem constant where as mine fire of for no more than 10-15 seconds, and once it has fired it takes time to build up again. HOWEVER US ALIENS ARE NOT ALONE. A little further down the track of investigation, im under Dr mark roberts of Hope Hospital Neurological unit Manchester, the actual doctor mentioned/recommended in the MGA UK summer edition 2006. (so i know im in good hands) What i have noticed about my rippling muscle disease is that when i am hungry it gets bad and when i have eaten about 1 hour later it almost disappears. Mark Roberts curious to find out why my swallowing is bad and breathing feeling weird has sent me to a Gastro Neurologist. I have had a lung fuction test which says my lungs are that of a 27 year old which is good as im 33. I have to have a barium meal scan, the gastro neurologist explained that the muscles in my throat almost to my stomach are the same type as my arm, hence weekness in arm and explains my weekness in throat and swallowing. The test he suspects are a formality with no need to be concerned. However what has interested me is that this consultant developed 3 years ago cramp fasculation syndrome, which is either hereditory or autoimmune caused by an abnormal thymus or thymoma. What has given me encouragement is he was mega worried tried everything he could think of, like i have done to try and establish what was causing it, so medical doctors are the same underneath as we are. It was a relief to meet someone who knows what i have and am gone/going through. Cramp fasculation syndrome and rippling muscle syndrome are in the same catagory of autoimmune disorders and both are very very rare. If your spasms are constant when hungry or when under or overtaking your mestonin then i think its cramp rather than rippling muscle disease. (however im no doctor) The consultant also after 3 years was now not worried about this problem any longer. However your still an alien and a rare one at that. I am off on holiday for two weeks as of saturday but when i get back i will record my rippling for all to see. My shoulders take some getting used to as the tendons fire randomely. Forget the series Lost this is weirder. phil 33 To a fellow rippler and all talk to you soon.
MikeV 9 posts Aug 03, 2006 4:50 PM	I have an area on the back of my neck on the left side that tends to "fire" as you put it for a lack of better term. It lasts for about 10-20 seconds then it's done. It may or may not coincide with my legs so I can't point to a correlation between the two. I'm still working on geting a clip of my tongue going. Now that is a site to see. If you thought the leg was neat, wait until I get that filmed. Also for those of you paying attention to this thread, I'm an American so I don't have access to a lot of the Dr's you folks are talking about, but the information is still excellent none the less.
frostage 14 posts Aug 03, 2006 5:36 PM	Hello Mikev The mentioning doctors was a thing thats going on about good and bad neurologists. My muscles ripple in my bicepts, lats, thighs,stomach,neck,chest and sometimes calves, i dont have a tongue problem like you. We should setup a web site call it www.aliensyndrome.com and charge for access lol. People pay alot of money to see flesh and chase aliens, we could say we were abducted or we are aliens and we are moving under our fake skin, i believe we have found a new market. keep me upto date phil Last Edited frostage on 3-Aug-2006 5:37 PM
MikeV 10 posts Aug 03, 2006 6:21 PM	Ooo I like that, we could scam the world with talk of alien abductions. grin You'll also be happy to know that if you do a Google search for Autoimmune Rippling Muscle Disease, this thread is the number one hit. Seem's we are an authority now. Last Edited MikeV on 3-Aug-2006 6:25 PM
vickinok 7 posts Aug 03, 2006 9:36 PM	Well as my previous post states, we were waiting on test results, and as usual, they came back normal. Frostage: The dysphasiagram (the barium swallow) that my son had was abnormal. My son seemed to have some difficulty with it, apparently the epiglottis seemed to stay covering the airway for a bit longer that it should have.. don't really know what that means, just that it's abnormal. Be prepared, he said it was 'disgusting'. :) The doctor doesn't know where else to look at this point and is a bit paranoid to say it is definite MG, however, he up'd the Mestinon, which is helping my son maintain his strength level, but doesn't do a thing for the rippling, swallowing, or breathing and gave us the name of an MG specialist here in the states, so we'll see. We're also going to see about getting an appointment with a Pulmonologist. Mike: I went to your site and from what I could tell, it looks like my son's rippling. However, we haven't been able to pinpoint a specific cause (ie: exhaustion, food, meds, etc), it just happens. Sometimes lasting a few minutes with a few muscles involved, or sometimes lasting a few hours with several muscles involved. I kind of suspect that the tongue is rippling also because when other muscles are rippling, he has trouble with speech. I asked him if it felt like his tongue ripples, but he said that he couldn't tell.
frostage 15 posts Aug 04, 2006 3:47 PM	Hello Mikv I’m amazed we have made number 1 spot with the post on the forum, however if google ranks sites by the number of hits then we must be getting a lot of hits by possible other aliens. I think we should capitalize on our alien abduction plan as they did it with the house that they decided was haunted and called it the Amityville horror. At least we have evidence lol. We also have a new alien in our midst as vicniok son is one of us. We will be on the X files next. A curious question? Before you became ill with MG and alien syndrome, did u have any medical problems preceding the onset? A friend of mine had a thymoma and the consultant said it was almost defiantly caused by a virus hitting the system. Which made me think because last august I had caught a bad virus and I mean bad after 6 weeks of being ill, and not being able to pass 10 minutes without a toilet visit (I’ll save you the detail) in the end I felt so week even with salt replacement . I ended the problem by taking large quantities of Imodium. (Opposite to laxative if u don’t know the brand name) About a month later my left arm swelled to a point I could hardly bend it (it was extremely painful) and the doctor said he thought it was infected but anti-biotic’s didn’t cure it however gradually it disappeared over two months. Then I was hit with profuse sweating to the point I was saturated and yet it was winter and just above freezing, I didn’t feel I was overheating either. Then I had spells where I was loosing my body temperature to a point I could not get warm even in a hot bath, this would last a few hours and I would be normal again and it would switch on and off. In December the rippling started and the rest is history as they say. Please let me know but i'm of on hols for two weeks Avoid the Men In Black Phil
frostage 16 posts Aug 04, 2006 3:47 PM	Hello Vicniok I thank you for the warning about the barium meal, my ex wife’s cooking was pretty awful so I’m well prepared. I am pleased the increased mestinon has helped with your son’s strength. MG is extremely difficult to diagnose as each person may show different symptoms. From what I have read, mike’s condition is more like Cramp fasculation syndrome which is very similar to the rippling. By the length in time of the rippling i suggest it the same type as mike's A thought? Firstly: One thing I do know is that unless genetic the thymus is the prime culprit for causing calcium release problems aka rippling muscle syndrome and cramp fasculation. This in itself suggests a thymus abnormality. Secondly: mestinon is used to stop the breakdown of the neurotransmitter acetylcholine. One of the issues with MG is that it breaks down the neurotransmitter acetylcholine and acetylcholine is necessary for limb strength or muscle control. These two issues I have mentioned both indicate strongly an abnormality with the thymus and MG. (however I’m no doctor). I can’t understand in the medical community the lack of understanding of MG between Neurologists; none of them seem to want to make a decision. And from what I have read, neurologists have there own path of diagnosis. And it seems to be right at the end of the path that they decide to do a couple of test’s specifically for MG Hope things go well Phil Last Edited frostage on 4-Aug-2006 3:49 PM
chairman MGA Chairman 262 posts Aug 05, 2006 2:01 AM	Phile You said: "One of the issues with MG is that it breaks down the neurotransmitter acetylcholine" This is not true - MG blocks the acetylcholine receptors on the muscle fibre. MG has no effect on the production or lifetime of the acetylocholine. ---------- Peter Finney MGA Chairman Last Edited chairman on 5-Aug-2006 2:01 AM
vickinok 8 posts Aug 05, 2006 11:48 PM	Phil: Thanks for the info, I still got what you meant (you said it right, just misssed spellt it)... :) Mr/Ms Chair: Thanks for the correction, but I guess my son's, shall we say, alienism has rubbed off in that I was able to interpret what Phil was meaning... Vicki
MikeV 12 posts Aug 12, 2006 6:15 PM	I was diagnosed with a really nasty sinus infection just before I really had the onset of symptoms of MG. Actually almost at the same time.
frostage 17 posts Aug 20, 2006 3:01 AM	Hello Chairman Thank you for the correction, i am sure you will agree its a little confusing understanging the rux of the problem. Although i was trying to interpret the process from a journal i still failed to explain it in layman terms. Hello MikeV Thanks for your reply with regards to the question i asked regarding other problems preceding your problem. When i read your response i became quite shocked as its a symptom i had before the onset ot the RMD. Sporadically i still get really bad sinus infections which cause tremendous pain above my right eye. On the day you wrote your reply i had been to the doctors as my vain attempts to get rid of the infection had failed. Does anyone know of a any research on a possible relationship to virus's causing damage to the autoimmune system which results in MG.
vickinok 11 posts Aug 20, 2006 7:53 AM	Mike and Phil: Prior to my son getting the worse symptoms in August of '05, he was getting dizzy spells when standing or bending over that would last just a few seconds. Plus the first symptom we noticed in Aug '05 was vomiting profusely, but we chalked it up to heat exhaustion (it was during football practice -although the coach later told us that it began before any workouts).
JohnnyG 131 posts Aug 20, 2006 12:31 PM	Mike V. Re: viruses causing damage to the immune system + triggering MG. I had glandular fever immediately prior to developing MG. I got glandular fever and never really recovered. I was diagnosed with post viral fatigue + eventually it was realised I had MG. I think there are others here who had nasty viruses prior to MG developing. I now believe that most cases of post-viral fatigue probably are down to some sort of autoimmune problem. I am not a doctor and have no real understanding of how auto-immune responses develop, but intuitively it seems quite likely that nasty viral infections can and do act as a trigger for auto-immune responses. I'm not sure how much research has been done into this. John ---------- Kildare, Ireland
chairman MGA Chairman 266 posts Aug 20, 2006 1:13 PM	Frostage Are you absolutely certain that the pain over your right eye is caused by a sinus infection? There is at least one auto-immune condition (temporal arteritis) which could be causing it. There has been a HUGE amount of research into possible viral triggers for auto-immune diesase. As far as I know - nothing has been proven. ---------- Peter Finney MGA Chairman Last Edited chairman on 20-Aug-2006 1:16 PM
frostage 18 posts Aug 20, 2006 3:59 PM	Hello Chairman Thanks for your responce. With regards to 'temporal arteritis' my doctor is fairly clued up and has had the blood tests done for this condition which came back negative. I also know myself that its not down to this as when i get a cold over the last 9 months a tend to get an infection. I know its an infection from without being crude the mucus i produce is definatly an infected colour, which the doctor has seen From what i have read also i have none of the other symptoms. With regards to your responce to the question i have asked about the possibility of viral infections causing MG. If there has been a huge amount of inconclusive research carried out, i wonder if its possibly due to TIME, the virus causes the damage to the thymus, the virus burning itself out (or being killed of) or even continuing to be active and then the onset of MG occurs. By the time MG is diagnosed (which it seems is never immediate) it is fully possible for the virus to have disappeared. Which is why the research is inconclusive. Although its speculative is it possible. Last Edited frostage on 20-Aug-2006 4:00 PM
vickinok 14 posts Sep 01, 2006 2:12 PM	Mike and Phil: Well my son is still on the Mestinon only, we have been 'playing' around with the dosage, per his Neuro, while waiting for an appt with an MG specialist in St. Louis, MO. He was on one 60mg per every 4 hours, which helped him maintain his strength better throughout the day and was better than the starting dose which was one 30mg every 4 hours. Next, we raised his dose to 90mg every 4 hours. When we did this, we noticed that the rippling increased dramatically. (When he first had symptoms a year ago, his rippling varied between just a few muscles for a few minutes, to almost every muscles for a few hours.) It began to occur every day and would affect most muscles and last for hours (1-3). Since then, we took him back down to 60mg, but every 3 hours, which has decreased the rippling back to more of a hit and miss, like it was in the beginning. So, we are going to give it a few more days and if nothing changes, we are going to put him back to 60mg every 4 hours. So, in conclusion :), Mestinon has increased my son's strength and longevity of strength, but too much will increase his rippling. Vicki
frostage 19 posts Sep 10, 2006 11:34 AM	Hello vicnok i am so pleased that the mestinon has improved life with you child, i bet its quite a releif for you to see some form of normality. Interesting what you have said about the increased ripplin when increasing the mestinon. I think you should have a look at the following link http://www.neuro.wustl.edu/neuromuscular/mother/activity.html#ripple The reason i say this is because at the rippling muscle syndrome sporadic section, it says that it can be made worse by Pyridostigmine, which if i am correct mestinon is a commercial name for Pyridostigmine. This article may be worth showing to the neurologist as it also say successfull treatment for this is by using Prednisone or Azathioprine. Please let me know. philip
vickinok 21 posts Sep 11, 2006 11:41 AM	Phil: It's funny that you mentioned that site. I had read it before and had forgotten. We were hoping to get a prescription for Prednisone, however, on the last visit, my son's Neuro stated that he believed this to be MG, but with the different presentation, etc, but he can't say with 100% certainty that it is. However, when I asked him if it would behoove us to see an MG specialist, he said yes and recommended Washington U in St. Louis and mentioned the website and that he often visits it to do research. We now have an appt scheduled for Sept 18th with a Pulmanologist and again on the 21st with a Neuromuscular specialist (not the one my son's current Neuro suggested, but we'll take what we can get..). Hopefully, we'll come back with a confirmed diagnosis of MG (and possibly Autoimmune RMD), along with help with his breathing... My son now takes 1 60mg tablet of Mestinon every three hours, starting at 0700. This seems to be the best dosage for him, but he still needs more help. He at least is able to attend school from 1 to 3 hours a day, not quite every day, but usually 3 days a week (he refuses to use his wheelchair which could help him to stay at school longer). Which is a whole lot better than last year. We are happy with the results thus far and keep praying for 100%, so that he can lead a normal life. By the by, I was able to get my son's rippling on video (thanks Mike for the idea :) ). My son was having ripping in his legs and buttocks at the time and I started making him do eye and neck exercises, just to see if something happened. Shortly after ending the exercises, his neck started rippling. Needless to say, I will be taking that with me to the doctors appt... Vicki Last Edited vickinok on 14-Sep-2006 9:44 AM
vickinok 23 posts Sep 14, 2006 9:45 AM	Phil: We took my son to the PCP (09/13/2006) for a sore throat and during this time, he was having the rippling. So when the doctor came in to look at him, I made sure I pointed it out since no doctor thus far had seen it 'up close and personal'. The doctor stated that "Yes, I can feel it in his pulse". Also, previously when the nurse came in to take his initial vitals, it took longer than normal to get his blood pressure (she even thought something was wrong with the cuff) and when she was finally able to get it and the cuff released, my son was shaking his arm and said that it was very painful... Has this ever happened to you? Also, after re-reading you previous posts, I noticed that your CK levels were elevated. My son's were also, on two occasions. Don't know if it means anything, but...
MikeV 19 posts Sep 14, 2006 6:33 PM	I got it I got it!!! I finaly captured my tongue doing it's rippling! I know I know, I sound like a nutcase but I've been waiting for it to strike again where I could film it and I did. It's on my MySpace page under the videos. http://www.myspace.com/oefje If you can't get to it let me know and I'll e-mail you the 2 vids. One of my leg and the other of my tongue. A note on the tongue video: First, this is a fairly mild case of it, it can get much much worse than this. Second, when my tongue starts to go, so do my fingers. That is why it's so shakey.
richie 2 posts Sep 25, 2006 12:20 PM	Hi this is the first time I have been on this. I have had generalized MG for 2 years and in December 05 I started having muscle twitching but my whole body or parts of my body jerk. My neurologist said it was probably due to lack of sleep (is not being able to sleep anything to do wih MG?) but after a few months sent me for EMG which didn't show anything, he is not worried about it. They are more frequent now and particularly when i am fatigued. I am on 25mg of prednisone alternate days and 150mg of Azathioprine daily (plus all the stuff to prevent side effects!). Help!
sally1louiselouise 329 posts Sep 26, 2006 1:03 AM	Hi Richie, Not sure about your lack of sleep being anything to do with the MG, it is possibly the steroids, insomnia is a known side effect although your dose seems to be coming down to the lower end of the scale, and you take the same dose of Azathiaprine as myself. Sorry I can't help with the muscle twitching as I have never experienced this, as ever it is the same answer, we are all different. Sorry I can't be of more help........take care ---------- South Wales UK Last Edited sally1louiselouise on 26-Sep-2006 1:05 AM
vickinok 32 posts Sep 26, 2006 5:45 AM	Richie: For what it's worth (not diagnosed with MG)my son has been having trouble sleeping since the beginning of his illness... Vicki
vickinok 38 posts Oct 04, 2006 6:16 AM	Hey Guys: My son had another appt with ANOTHER Neuro. After showing the recording I had done on my son's rippling, he stated that it is more likely his jugular...since it was taken of his neck... I am always so impressed when I see Neurologists. Vicki
frostage 20 posts Dec 06, 2006 5:02 AM	Hello all I know its been a while since i been on but i have been playing the waiting game and have not died in the process. After Hope hospital found my muscle biopsy to be interesting but could not tag it to anything, they sent it to newcastle limb gridle muscular distrophy unit. The results that came back stated i had a deficiency in the caveolin protein. My neurologist reported this to me and said it was a suspicion i had limb girdle muscular distrophy which was caused possibly by a defective gene. Other investigations have involved camera up and camera's down and nothing has been found untoward. (if u get my gist) The idea shocked me that it could be genetic and frightened me in some respect to what it would mean not only for me but my off spring. It also switched me off the idea that it was immune mediated and hence why i have not been updating my post. However as my son now calls me. Lab Rat went to newcastle yesterday for diagnosis and observations. And all i can say is wow. The place is NHS and University crossed and i can only say how unbeleivably pleasant and professional they were. I was seen by 2 professors most of the time and at one point i was inspected by 6 others professors. However all the waiting was worth while as it turns out that all the worlds leading muscle boffins get together each year at the world muscle association conference and the subject of RMD was discussed as there are 7 of us recorded with this problem. The muscle biopsy shows certain fibres deficient and certain fibre normal of caveolin protein. People with a genetic issue's show absolutly no caveolin protein. 2 of the 7 people have tumours of the bowl and prostrate and in the past it has also been linked to abnormalitys of the thymus. It has been known for a long time that RMD of my nature is definatly an Autoimmune responce which can be triggered by the immune system producing antibody's which attack not only the tumour to little affect but also normal tissue. However due to this conference it is now the firm belief that A virus or bacterial with a similar genetic pattern to our own tissue can cause the immune system to produce antibodys that attack normal tissue. The wreckoning for this is that myself and 4 others with this condition had nasty viruses before the onset of RMD. (i had mentioned this question in august on this site lol). I have now got to have some further tests to identify the antibody concerned and also they are performing the tests at long last for Myasthenia Gravis as it is now beleived this is the crux of my fatigue. Interestingly enough the Professor could see a relationship with food intake and how bad the spasms are, which other consultants had poo poo'd. The spasms as a rule over the last few months have been receding in terms of muscles affected and strength and frequency. It is the professors belief that the immune system could well be detecting the fact that one of its antibody's is damaging good tissue or that the immune system recognises there is no longer a virus attacking the system and is slowly stopping producing the antibody which is causing the RMD. In the event of it being confirmed auto-immune RMD it can be succesfully treated with immuno suppresents. It has worked apparently for the other six lab rats. However im an awkward bugger and dont like pills of any sort. I have had 12 months of dealing with this problem and the fatique and my mind in terms of worry has been to hell and back. My mind is stronger now and i have decided for the time being to live with the problem, rather than being pilled up. I think the professor was happy with this as it gives him further chance to study the one lab rat taking it on the chin. As i say they are only theories and beliefs, but from the people i met yesterday i could tell i was dealing with mad scientists crossed with doctors and their presence and knowlege i could just feel was awesome. I cannot say in words how impressed i was. phil Aka lab rat Last Edited on 6-Dec-2006 5:06 AM
LouiseL 1 post Jan 17, 2007 8:39 PM	Hi everyone, very excited to have found this website, as was beginning to think that nobody else out there was experiencing the weird and wonderful symptoms that is RMD. I was diagnosed with Autoimmune RMD in April 2006. I had giving birth to my 1st child 5 months earlier and am figuring that after a bit of a rough birth and recovery, that may well have been what bought it on. I had a muscle biopsy done to confirm it was caused by autoimmune, not inherited or caveolin-3 as is often the case. I also had a CAT scan to rule out a tumor in my thymus gland. I have the rippling in mostly my thighs, arms, lat muscles and stomach. I can't put my finger on anything that seems to aggrivate it, but by the end of the day, after I have been sitting down for a while, I find that when I get up to walk I look a bit like an old lady, hobbling about. So I have had this disease now for 9 months and while it got progressively worse for the first 4-5 months it now seems to have settled down and just "is what it is". I guess that I am also getting used to the rippling and just get on with life. My neurologist is a great guy, but as I am the only case he has seem in over 30 years, there is not much he can tell me about it. I am wondering if there is anyone out there who also has the Autoimmune type, and if so, how are you going with it? How long have you had it, how bad are your symptoms and are you medicating it. I have chosen not to medicate as for now I am coping with it fine and also want to have more children. As with a lot of autoimmune diseases, when women are pregnant they often find their disease goes into hibernation, to focus on making the baby I guess. So thanks for your time. Again, glad to see that there are other "Aliens' out there. Louise
frostage 22 posts Feb 05, 2007 3:09 AM	Hello Louise All i can is WOW. There is another me out there i dont feel as lonely now. Being ill (if thats the correct term) is bad enough but not having anyone to compare or relate to can make your problems worse from a mind point of view. Congratulations on having a baby, i have a little boy of 3 and he is my life support system. When i feel down i simply look at him and after watching 16hours of bob the builder i feel tonnes better. We are very very rare people in terms with our condition, as i have said previously to be camcorderd by a dozen mad scientists who are extremely excited because they have never seen this condition before is a very weird experience. I have questions for you also but i will answer yours first. My condition started on the 13th december 2005 and just like your condition the first 5-6 months were really really spasmy. I dont know whether this was made worse by my stress of having weird things happening to my muscles and not knowing my future. Or if the condition just generally calmed down on its own. Weirdly i was put on antibiotics for a kidney infection/stone and on the 29th january 2007 my spasms disappeard as i was finishing the course of anti-biotic's. They disappeared for 4 days which is the longest gap i have had. Then on the 1st febuary i broke down with a flu like bug, i think it may well be due to the fact i had been hit by a bug and my immune system had been dampened down due to focusing on the bug. From friday when it showed its ugly head i started the spasms again. To be honnest it felt weird being normal as i have grown so used to them. I have been looking into kidney stones and one cause of them is excessive creatine kinase in your blood, which as you have the disease your levels will be elevated. To avoid the inconvenience drink plenty of water the recommend 2-3 litres a day. I also dont know if its coincidence but in my constant efforts to understand more i take fibro gel everyday which has made me feel alot more healthy. Also one gastro neurologist recommended giving up bread (which broke my heart) I have been of bread now for 3 months and my spasms are only about 10% of what they were when it first started. These therapies (for want of a better word) may all be in my mind, but i no longer have stomach spasms, or shoulder spasms. I still get arm spasms but not as frequent and more in my left than right. My thighs still get them but no where near as bad or uncomfortable. And yes when i sit down for a while, i still get it in my hips and for a while i walk round like an old man. Reading your post was like a breath of fresh air because as for the symptoms you have described i could have wrote your post myself. However i was stumped to hear that autoimmune conditions calm down when pregnant, i can understand the logic, however as it would be a miracle for me to have a baby it would be an experience i wont receive the bennefit of. However im rambling. Please let me know if you have found anything at all that affects the rate of your spasms. Or any information you have on the subject, cos were so rare there is very little out there. Phil
nye 1 post Apr 15, 2007 9:44 AM	hello everyone im a new member to the forum and internet i was interested to read the messages from mikev,frostage,and sharons.just to let you all know i was the person in the video shown by dr.hilton jones at the mga conference last year.i was diagnosed with mg in 2002 after having numerous tests in various hospitals in south wales. it took a further 2years before my local nuerologist revealed he was unaware of what was causing the pain and rippling muscles and he refered me to see dr.hilton-jones at the radcliffe infirmary in oxford (now closed) he listened to all the problems i had encountered over the previous 4years he did a few tests and notified me within 24hours with a diagnosis he reqeusted me to go into hospital for a plazma exchange which i reluctantly agreed this being the first time for me to be admitted to hospital,after starting the treatment this was the first time in 4years i had been pain free although this only lasted 2days after coming home before the pain returned.i was put onto steroids to get the rippling muscles under control they did the trick accept in my legs which still give me the same cramp like symtoms and additional weight this is a brief summary of my encounter with mg and rippling muscle disease.(ps sorry about my bad punctuation) nye Last Edited on 15-Apr-2007 9:50 AM
frostage 23 posts Apr 15, 2007 3:36 PM	Hello Nye Thank you for your post, just to keep all updated, i have had the results back from newcastle which were testing for MG which is often linked to Auto-immune rippling muscle disease, fortunatley for myself i have tested negative and therefore do not have MG. SO you could say i have no right to be on this site at all. However the consultants are still convinced its Auto-immune, it seems that it maybe a sporadic case. I hesitate to say this but over the last few months the rippling muscle disease has almost disappeared and my strength is returning to normal. The consultants do say that in some cases this happens, however they are still convinced that there is a relation to viruses and Autoimmune RMD when there is no other symptoms of abnormalities within the body. I feel after being tested more than the average labrat and nothing being found, that i may just be a sporadic case. I really really hope i am sporadic. phil
nye 2 posts Apr 17, 2007 1:56 AM	hello louise. i have the same problems as yourself they are worst after resting but we can,t keep on the go for 24hours a day, 1 have lived with problems of rmd for 7 years but only diagnosed in march 2004,i could induce the rippling by just pressing the muscle this became my party piece and my partner used to say i had an alien inside me. it became embarrassing when meeting friends at my local i would try to pick up my glass and my arms seemed to have a mind of their own they would either move away from the glass or knock it and spill my drink. i am currently taking azathioprine to control the symtoms. nye. Last Edited on 28-Apr-2007 8:43 AM
LouiseL 2 posts May 12, 2007 8:13 PM	Hi again, well a lot has happened since I last wrote, falling pregnant being the main thing. I'm currently 20 weeks pregnant and am so far enjoying a very easy and healthy pregnancy, so that is good. The main bonus, as my doctor had said may happen, is that the RMD has practically gone. Mind you, this is only a temporary thing as the pregnancy often causes auto immune diseases to go into remission. The first 3 months I still had a few symptoms, but now I only have a little in my triceps, so am very excited about that. Mind you, I know that when the baby is born, I'll be back to square one again. I have to say though that after reading about everyone else on this site I feel very lucky that my experience with the diease is liveable with. My sypmtoms piss me off a bit, but I feel no need to medicate them and am happy to just get on with life. I will be interested to see if the symptoms do get worse after the birth of this child, as it was after the birth of my first child that they all started for me. Will keep you all posted on that front. Till theres more news on my front, ta da, Louise
guzbud 1 post Aug 16, 2007 6:58 PM	Hi all, I have recently been advised by my neuro that he thinks I have RMD after looking at my EMG results and blood test. I definitely have all the same symptoms as you frostage but without the trouble swallowing. I would love to swap some messages to get more information from fellow sufferers. Thanks