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New here - and not surprisingly have questions!!!

Allie 1 post Jun 17, 2009 10:04 AM	Hi guys, My story, like so many others here, is a long one, and I still don't have a diagnosis. So I apologize for the length of my post in advance - hope I don't send you to sleep!!! Right, here goes... About 6 years ago I suffered from optic neuritis, so when I started to get weak in my legs and forearms along with various different peripheral neuropathies just over 3 years ago, I was immediately packed off to the neurologist and told to prepare myself for an MS diagnosis. Numerous tests later, and with more of my blood sloshing round the lab than in my body (seemed like it anyway!!!), I was told still believed to be MS but tests negative. Move forward a year, tests are still negative and the MS diagnosis goes, only to immediately be told I have Lupus instead. This time I tested positive for Lupus, having given yet more blood!! Then they decided it wasn't positive enough and was caused by my long term, but stable, hypothyroidism. So the Lupus diagnosis then went the same way as the MS one ARRGGHH!!! In that time the symptoms have got to a point where they have a major impact on daily life. I now have constant pins and needles/numbness across most of my body, serious weakness which started in my legs and arms has now reached my neck, eyes and face (which make me look like either a ragdoll, a zombie, or about to fall asleep depending on who you ask!!), I have mild double vision caused by imbalance of my eye muscles (according to the optician), and weakness of my tongue and problems swallowing. I need to use a stick to get around and plan ahead if I need to go upstairs to the bathroom, and I constantly shake with muscle fatigue. So...my neuro has now said he suspects MG (due to the symptoms above my shoulders) and today they've taken MORE blood for the anti-acetylcholine receptor antibodies. hopefully I'll see him in the next month, but as he's only here one or two days a month, it could be another long wait. So my questions... Does any of this sound familiar to anyone, or is this another wild goose chase? From what I've read it sounds more like LEMS if anything, but would the blood test I had also be positive for that, or would a completely different test be needed. Loads more questions, but I'm sure I've bored you all to tears by now, and the cat is also being very insistent that it's time for his food (might have to get him some scratch mittens, if you know what I mean!! ;-} Here's hoping that it all goes away, but after three years, I just want to get some treatment for the symptoms, whether they decide what it is or not! I promise my posts won't ever get to this length again, and if you've managed to trawl through to the end, CONGRATULATIONS!! and thankyou!! I look forward to hearing what you think Best wishes, and I hope everyone's having a better than average day Allie
sally1louiselouise 759 posts Jun 17, 2009 11:06 AM	Hi Allie, Welcome to the forum, well I suppose you wish you didn't have to be on this forum but you know what I mean. Your story is very familiar and yes I and others can relate to what you are saying in one way or another. One thing that does come across in your post is that you seem to be a very positive person and have a sense of humour, that is definitely a plus for anyone I think. You are not boring at all, so need for apologies, I hope you don't have to wait too long for the neuro appointment. I drew the short straw today when I went for my three monthly blood test, I got the heavy handed nurse taking the blood, so a sore arm for a few days. Hope you haven't forgotten to feed the cat........ SALLY ---------- South Wales UK
Allie 2 posts Jun 18, 2009 7:43 AM	Thanks so much for your reply Sally, it helps to know that I'm not alone fighting this and that other people had had similar experiences (although it would be lovely to imagine a world where none of us had to!) I guess I am quite positive but that's probably because compared to fighting back from paralysis of my legs after contracting MRSA in hospital 8 years ago, this seems so much more "minor" to me, but that's all relative to each of us. I still have my moments of "life's so unfair" but at least I had several years of walking normally again before this turned me into a waddling duck!! I hope your arm's feeling better after yesterday's onslaught, I hate it when you get the sadistic nurse for blood tests, luckily I can have all the bloods taken at my GP's surgery by the same nurse each time (that's also good because apparently it's a bit like trying to get blood from a stone!!) Amazingly I got my appointment for the neuro through today and I only have to wait until the end of next week, so I hope the test results are through by then, and things can move on a bit (I won't hold my breath though because I've been here far to often in the past) I hope you're having a good day today, and thanks once again for your reply Allie PS The ginger nutcase cat did get his food in the end, just before I flaked out in a heap on the sofa (at least he still spends more time lying down and asleep than I do, just, anyway!!!)
TinaM 112 posts Jun 18, 2009 1:21 PM	Hi Allie It all sounds familiar to me, and your certainly not alone being in limbo land. I've had symptoms since January, this year, nowhere near as long as you. You can see my full story if you click on my name (left of the screen). My blood tests have been negative, but I'm on mestinon as the first neurologist I saw suspected MG. It does seem to improve my symptoms. I too have had mobility problems for some time, so I doubt I would notice any weakness in my legs as that would be nothing new. I hope your results are through by the time you have your appointment. Keep us posted. ---------- Tina Gloucestershire UK Last Edited on 18-Jun-2009 1:23 PM
Allie 3 posts Jun 20, 2009 1:00 PM	Thanks for your message Tina. It's so frustrating being in limboland, but at least you've been able to get some treatment that helps. At the moment my GP doesn't want to prescribe for the symptoms just in case it masks something. Hopefully all that will change on Friday though. I'm trying not to get my hopes up too much just in case yet again the tests come back negative. But I think now it's time to stamp my feet and make a bit of a fuss (if I can find some energy - as always I put it down somewhere safe and now can't remember where it is!!!!) If I could have even a 10% improvement to my energy I'd be over the moon!!! I'll keep you posted and I hope you're having a good day Best wishes Allie
TinaM 117 posts Jun 20, 2009 1:53 PM	Hi Allie Going to the neurologist without medication is probably the best bet, although my appointments are always early morning, so although my symptoms are always there they are never at their worst. That said my symptoms may be present but my current neuologist seems to ignore them, evident as they may be. These are the same symptoms (if not worse) than the ones I was initially diagnosed with, so yes it is very frustrating. I do hope you have a good neurologist & that you are satisfied with the answers you get. It's weird, i've had a really good week this week, I've been off work and been busy, so doing more physical work (mainly outdoors) than normal and yes I have been weak, but have hardly taken any mestinon. I really would have expected to be worse than normal but that's not been the case. Maybe it's just that I've been able to take my mind off things more than usual. I've had more generalised weakness, but swallowing & speech have not been much of an issue this week, although my vision seems to be getting a bit worse. We have horses so I've been outside all week while my husband has been doing the fencing in the field. I'd like to say I've been helping him, but I'm not too much help these days (moved a bit of stuff out of the way and passed him his tools), it still felt like i'd done a hard days work each day though! Back to work next week!! I think I'm worse then as I get up really early 4 days, ie 6am and it can get quite hot in the office in the afternoons. I'll no doubt be back on mestinon 3 x daily & more aware of my symptoms. ---------- Tina Gloucestershire UK Last Edited on 20-Jun-2009 1:56 PM
angel75 92 posts Jun 22, 2009 8:38 AM	Hi Allie, I have been through the same process you have, first they thought it was MS but after further testing MRI's lumber puncher all negartive, so 2 yrs later my GP thinks it is a auto immune or neuromuscular and with the help of the chairman i have been refered up to the national to a consultant who knows about MG. I was told i have fibromyagia as well due to injury from a horse riding accident and car crash yrs ago so this clouds the issue alot. They say you dont get pain with MG or sensory feelings like i get and you explained but i have talked to a few on here who do get those issues. My life is greatly reduced i walk with a stick and have to use a wheelchair for more then a few yrds,i have a stair lift as stairs are a problem and getting out of chairs are bad too. I have problems with my voice it gets weak as the day goes on and swallowing at times is a problem,my eyes are not as obvious as some photos i have seen of MG suffers but they get heavy and do droop more on left then right but only slightly. I have problems listening to people in crowed rooms and my ears ring and are sensitive to noise and my eyes sensitive to light. Heat makes my MG worst but helps my fibro LOL Take care and keep in touch. sam
JanS 22 posts Jun 25, 2009 9:12 PM	You know, I was a bit down and you all with your droll comments, have lifted my head. "Ginger nutcase" Allie, I have a tabby nutcase! And, Sam, I have Fibromyalgia and MG too and have often laughed about the same thing: Heat for fibro, not for MG, Stay cool for MG, stay hot for fibro! thanks for making me smile. Not a helpful post from me but I wanted to say you guys are great. JanS
angel75 93 posts Jun 30, 2009 10:55 AM	JanS can i ask how you got the dr's to move past the fibro and test for MG? or did the MG come before the fibro? and it is odd to have the heat cold fight with the illnesses in our bodies. sam
JanS 23 posts Jun 30, 2009 11:08 PM	Sam, I was diagnosed with the MG before I was diagnosed with the fibro - MG was actually my first diagnosis. I wonder sometimes if the fibro is exacerbated by my other conditions, just as you say. I seem to have an auto immune complex as so many do - I have Hashimotos as well. I also have very dry eyes and my doc and I have talked about testing for Sjogrens, but haven't yet. I think a lot of my eye symptoms come from the MG, and how do you figure out what symptom is from what condition? And I have Reynauds as well which is not autoimmune but I find interesting because it came along about the same time as the fibro. I also have questions about pain and MG because sometimes I think the pain is more associated with the MG than the fibro as sometimes the weaker I am, the more pain I have. Do you think your pain is from the MG as well as the fibro? Do you think it is important to know which symptom is from what condition? I'd like to hear what you think about this. (or what anyone else thinks or has experienced). Sometimes I wonder about all the tests the docs want to add another diagnosis... Sorry for all the questions, you just asked me one! As for the heat/cold conflict, perhaps we need to stay just warm... I am sorry for all the restrictions you have, I am more fortunate and am able to function pretty well with Mestinon and rest. I have used the prednisone in the past but the side effects were so awful and happily I don't seem to need it now. I am not currently taking anything for the fibro, nothing seems to work very well on that front. My daughter was just diagnosed - at age 34 - with fibro so I feel like that is my fault! But she is trying some of the new medications, so I'll see how it goes with her. I hope she will never have to deal with MG! My best to you, JanS
angel75 94 posts Jul 01, 2009 6:06 AM	Hi Jan My fibro started suddenly as was so bad and still is at times i wonder if it is fibro at times but i have been tested for MS twice and all was negative, i do feel i get pain from what i feel is MG or some other muscle auto immune disorder and i can tell what is fibro and what is not, i get a deep aching when i push my muscles beyond there capascity which goes with rest yet the numbness and tinglng and hyper senstive skin that cant even be touched with clothes is fibro. The not being able to climb stairs and get out of a chair is not fibro its mg or something else. The heavy eyes is mg and the light sensitity could be both. I feel its important to know what sx goes with what illness for sure as we have to deal with each differently and also if we are listening to our bodies we will notice if something else is wrong that cant be put down to our illnesses. I also have rhaynards sydrome and is normally only bad in winter i get it in my feet too but not as bad but i have noticed my hands and arms getting pins and needles it is very hot at the moment so was wonderng if this was to do with the rhaynards or fibro or MG. I have wondered at tmes if i have polymyopathy a neuromuscular autoimmune disorder that is treated well with steroids. I'm sorry your daughter has fibro i tried most of the meds and they dont work the only thing that helps is hydrotherapy and my pain patch which i change every 72 hrs its an opiod like morphine. How did you get dx with MG was it the eyes being drooping that pushed you forward? Keep in touch. sam
JanS 25 posts Jul 01, 2009 10:23 PM	Oh, Sam, I so understand what you are saying. I get tired of trying to attribute symptoms to a particular disease but I don't have as disabling symptoms as you do. I really think the fibro and MG symptoms overlap the most, especially the eye symptoms. the pain also is different I agree that the MG pain is a deep aching. I know that mestinon will help with the pain so I am pretty sure it is from the MG. Fibro pain is not so specific. I was diagnosed via titer test, because of the droopy eye and double vision. Took only about a year which I understand is not so long... I did progress to generalized MG rather quickly. I still always have double vision but the ptosis is almost always gone since my thymectomy. Keep doing what you can and I do hope you find the right diagnosis. It is so hard not knowing. My thoughts are with you! JanS
angel75 97 posts Jul 02, 2009 10:05 AM	Thanks jan for talking its so nce to talk to somebody with fibro and another condton its sounds you have alot going on in your body several auto immune disorders have you heard of undiferentiated connective-tissue disease which is a combination of several autoimmune disorders. Its so frustratng MG seems to be the only one that fits except limb-girdle dystrophy the only thing that does'nt fit in MG is the eye drooping mne do droop when tred or n a bad flare or hot but only slightly noticable lke i am constanly tired and the photos i have seen on the internet are very bad i have had on off double vison but not there all the time. I guess one day i'll know. keep well. sam