Is there any tips for the surgery also? i have never had a GA before so dont know how my body will react but they seem pretty confident which is reassuring.

Any advice on what ill need around the house for when i get out of hospital after the surgery? i just cant think of things and im on a top floor flat so when i get home ill be stuck indoors for a while but luckily ill have my mum looking after me who is a nurse.

its getting closer and a bit more nerve racking i just want it all over now..waiting is the worst.

Good luck, try not to worry, and come and let us know how you are after the surgery, it will soon be over and done with and you will be recovering.

Take care........SALLY.
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South Wales
UK

I am from New York City in the USA, and I am quite impressed by this forum for our common disease.

I was diagnosed with MG in April, 2008 after having ptosis [droop] symptoms as far back as just about a year. Part of the reason it took so long had to do with a chain of ocular events unrelated to the disease. [I intermittently suffer from blepharitis related to a deeply-entrenched resistant staph infection that reacts to topical antibiotics applied to the nasal area; I also have upper-gum inflammation and rosacea; it's all connected. Self-treatment of the problem led to corneal scarring and "dry eye" syndrome including photophobia. Also clearly there was an allergic component as well, solved eventually with Optivar, an opthalmic antihistamine. My opthalmologist can be "excused" for concentrating on all of this, eventually treating me also with Blephamide, an antibiotic combined with prednisolone. By the time all of this was under control, it was obvious "something" was still wrong: uncontrollable eye closing with the ability to open again, spontaneous double-vision that lasted for weeks, then seemed to vanish, only to repeat the cycle over a course of months.]

After finally locating a neurologist who specialized in treating MG [the fifth in the "chain" if you include the opthalmologist], it was confirmed I had a fairly "classic" case of MG.

I was 60 years of age, male, no thymoma problems, and after April 2008 apparently having permanent double-vision and a pronounced left eye ptosis. The diagnosis was rather simple and dramatic, as I responded quite positively using the Tensilon test [recorded by the physician before and during the test for the benefit of the students, as I was in a teaching hospital]. However, my general neurologist ordered a carotid doppler test, MRI [without contrast] and MRA to rule out brain aneurysm or other condition that could mimic MG symptoms.

Treatment consisted of 60 mg Mestinon to be taken every six hours, and commenced in early June, 2008. The side-effects were quite profound and rather painful abdominal cramping became a way of life.

The ptosis was virtually eliminated, and there was marked improvement in the double-vision. However, I would ask anyone here in the forum if this first-time contact with Mestinon is typical or not: I had strangely varying forms of "false vision" for lack of another term. I could qualify aspects of my vision in terms of what distance double-vision was or was not present. Transiently, all measurable parameters of this form of change could turn in minutes as the level of the Mestinon first peaked then ebbed. One particular episode had most aspects of vision being fine briefly, followed virtually instantly by a complete reversal: Only that aspect of vision that was holding back from double-vision now was the only part of the visual field that was NOT double vision!

All of this continued through the middle of September, 2008. I am a computer programmer by trade, and fortunately I was able to perform work because my near vision was the least affected. Tasks such as driving were out of the question due to the fatigue as well as never getting total visual "update" control back.

In the middle of September, I contracted bacterial pneumonia with grave complications of "consolidation", "weeping" edema of the legs, which in turn led to severe pulmonary embolisms [many in both lungs]. In the interest of brevity - I almost died!

During the earlier course of the disease, I took myself off of the Mestinon, due to the severe abdominal cramps it the medication coupled with the painful abdominal effects of severe coughing associated with the pneumonia. As was later confirmed regarding the edema, I was unable to lie in a bed, and had to virtually always stay upright either standing or sitting, falling asleep in a chair was the norm. [And this is what led to the "weeping" edema which in turn led to the clots in my lungs.]

Now here is where the situation became interesting regarding MG: My wife first noticed it, but the ptosis [which of course came back when I discontinued the Mestinon] actually started to correct without medication. [The Omnicef antibiotic I was taking has no relevance to MG.]

While my overall condition was getting worse, the MG was improving!

I was taken to the hospital emergency room, admitted and over a course of 15 days, all of the other problems corrected; I walked out of the hospital unassisted, and over a course of several weeks of physical therapy recovered fully the use of my lungs, etc.

However, a full week before I was released from the hospital [a total of 15 days] I was in total remission of the MG; in fact in November, 2008 I was driving!

Can the extreme stress of being that sick perhaps have any bearing on why this led to a remission or is this merely a coincidence?

By late December, 2008 the ptosis started coming back; within two more weeks, the MG returned, ending the remission. And this time around, the symptoms were worse; the ptosis was around the same severity, but I now had double-vision at all distances and directions; this severely interfered with my ability to work, etc.

Mestinon was attempted in January and February 2009, but it started with hardly any effect, and by the third day virtually no effect. The second time, the dosage was 60 mg every three hours. Curiously, the first day I got a moderate abdominal cramp, but then nothing else.

In March, my doctor admitted me into his hospital for initial IVIG treatment. I was given GammaGard for a course of 2.0 liters administered over a course of 4-5 days at a slow rate of never more than 50 ml/hour, and much of the time somewhat less than that. Each day started with a precautionary acetaminophen and benedryl tablet.

On the third day, I developed a violent fever leading to chills with uncontrollable shivering, but then it changed to a straight fever, which then broke six hours later. Although weak, I had no further reaction that day.

By the last day, I was feeling a whole lot better, and was released after all the IVIG was infused. After I returned home, I started Mestinon again. I had another similar fever around three days later, but slightly less intense.

Surprisingly to me [but not to my doctor] the Mestinon is now having somewhat more effect on me. The combination of IVIG and Mestinon gives me something like a 2/3 improvement of my vision. In essence I have weaker than last year, but serviceable close vision without double-vision, and a few positions for very limited distance vision without diploplia, albeit quite fatiguing.

The Mestinon improvement has the interesting property of essentially no side effects at all. In fact, I must take it with no food or other medication just to get the maximum effect available. Should I fast for much of the day, my second Mestinon, taken 4 hours past the first one, causes a small but familiar abdominal cramp, as well as a marginally better overall vision improvement, as measured by total positional area free of double-vision.

So, on balance, IVIG and Mestinon is a big improvement over my post-remission state before taking the IVIG, but I can hardly compare it to my first Mestinon reaction, or to the post-remission experience at the other end of things.

I am scheduled for a 400 ml "booster" every six weeks as an outpatient [my doctor's office is on hospital grounds, but not considered a patient area; but does have an IV treatment room.], which is a considerably less situation from the initial in-hospital treatment.

The 400 ml is administered in four hours, as apparently at my current age [62] I can tolerate this rate of infusion. This is twice as fast as the highest rate when I was in-hospital, but for this short an interval, it seems fine. And no further fever effects.

Thank You for any comments.

Charles Lasner

CLASystems@gmail.com

Last Edited on 14-Jun-2009 2:27 AM

There are medications which can be prescribed to reduce the bad side effects of Mestinon - you need to discuss this with your doctors.
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Peter Finney

MGA Chairman

Thank you for the information on reducing side effects. I really could have used that information when I first was taking the Mestinon before getting deathly ill from pneumonia and then the subsequent remission.

However, currently, I have nearly no measurable side-effects whatsoever, and the Mestinon is having only the most minimal effect on improving my vision at all. However, it does seem to have a more direct effect on the ptosis, which I consider merely as a minor nuisance, since it is really not that bad whether on IVIG alone or in combination with Mestinon taken every 3-4 hours.

Hopefully, my future Mestinon treatment will rise to the level of seeking relief of side-effects coupled with some additional relief of the double-vision, as my present condition is so tenuous as well as an incomplete solution [say compared to my relatively recent remission]. Anything that could increse the benefits I would gladly welcome from any source; I will certainly post on the Forum any such benefit should I come across any, or perhaps should my condition change [for the worse or better] during my ongoing IVIG treatment.

I should add that I am not considered a candidate for any immunosuppressant therapy. That statement was forwarded to my cardiologist, who literally and figurative breahed a sigh of relief. To quote my neurologist "I don't want to kill you!" as he stated all of the objections to the likes of Prednisone therapy.

During my 15 day stay in hospital starting as an emergency patient for the life-threatening condition of pneumonia, edema, and pulmonary embolisms all at the same time [to quote my pulmonologist with regard to the largest of many lung embolisms: "That's the largest lung clot I have ever seen in my professional life!" and after 11 days on Heparin then crossing over to Coumadin [warfarin] he indicated it was only 85 percent reduced, sufficiently to continue with Coumadin alone.

During this time, it is fairly standard to treat lung-related problems with corticosteroids, in this case Solumedrol. Within 24 hours, my usually extremely managed blood glucose levels shot up to over 300! I was administered Insulin daily during this brief period I believe lasted only three days, followed by additional Insulin shots for the best part of a week and then Metformin, which I am still on presently over six months after the episode. These days, my blood glucose two hours after eating is typically around 84-91, and my A1C is 5.1, which indicates my blood glucose is stable again, consistent with good eating habits I obey these days. However, methyprednisolone literally made me an instant severe diabetic!

Thus, and perhaps especially because of my age [62], I am not a good candidate for Prednisone, and presumably Imuran [my cardiologist basically said to not even mention that drug for me!].

Thus, with Mestinon alone largely ineffective, my options seem limited to plasmaphoresis or IVIG, with the edge seeming to be towards the IVIG.

Again, Thanks to all for looking at my personal story. I know everyone's is different in MG, and I hope my variation can provide some insight to everyone.

cjl

Last Edited on 14-Jun-2009 2:18 AM

You wrote:
'To quote my neurologist "I don't want to kill you!" as he stated all of the objections to the likes of Prednisone therapy.'

That is a very extreme statement! There are many thousands of people with MG who are or have been very successfully treated with steroids such as Prednisone - despite the well-known side-effects. In fact there are many people alive today who would not be alive today without the use of these medications.

It may well be that potential diabetes is a bar to the use of Prednisone in your case. However there are several other immuno-suppressive drugs which can be used to treat MG.

Are you sure that your neurologist is a real MG expert?
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Peter Finney

MGA Chairman

Last Edited on 14-Jun-2009 2:58 AM

Yes, I am quoting him correctly, and he is most definitely a real MG expert. His statement had a small air of levity, but in essence, he was stating that he was not in favor of Prednisone for me personally, although he has prescribed it for hundreds of other [younger] patients who perhaps can tolerate it better, etc.

My cardiologist is quite familiar with Azathioprine [Imuran] and has ruled out my use of this drug for a variety of reasons in my case. Additionally, he is managing my diabetic situation, which continues with Metformin 500 mg twice daily. Apparently, my contact with corticosteroids, however brief, has caused me some measurable negative reaction in the diabetic sense. I am essentially OK, but only due to an extremely well-controlled regimen of food, exercise, and of course the continued usage of metformin as well as daily monitoring of blood glucose levels and periodic blood tests for a variety of measurments including lipid levels and A1C.

My neurologist's decision process is of course influenced by reports from the cardiologist; they do cross-report medical findings.

The only other drug I am familiar with is Cyclosporine, which as I understand it takes quite a long time before any improvement [if any] appears, and perhaps has additional potential problems for me.

Can you indicate or perhaps point me to information links about any other potential candidate drugs?

Thank You in advance for any further information

cjl

Last Edited on 14-Jun-2009 3:33 AM

Charles - have you downloaded our FREE information booklets; look HERE.

Peter Finney

MGA Chairman

Charles

You may find these interesting:

http://en.wikipedia.org/wiki/Cellcept

http://en.wikipedia.org/wiki/Methotrexate

Peter Finney

MGA Chairman

Thank you for pointing me to all of the useful documents. I especially read the guide intended for medical professionals and certainly learned several things, as well as encountering information I have already learned previously. [The Internet can be a wealth of information, at least if you can use it effectively!]

I have already read about mycophenolate mofetil [Cellcept]; it is my understanding that this is a long-term therapy not usually used for Ocular MG.

My first noticable symptom was a left-eye ptosis in April, 2007 seen by my wife; it has no symptoms other than appearance at that stage. We went to our opthalmologist who is treating both of us for cataract condition at widely different stages of the same problem. My wife has already had dual cataract surgery and lens implant, both quite successful and at the stage of merely routine occasional followup. In my case, I have a small cataract in my left eye; watchful waiting is the current order. Incidentally, cataract condition may contradict corticosteroid therapy, as it is known to hasten the loss of sight which would then require me to also have lens replacement surgery, complicated further by any MG-related preparation, etc.

The first thing the opthalmologist did was order x-ray films in multiple views to rule out thymoma. Although not an MG specialist or even a neurologist, he was well aware of the association between ptosis and thymoma; after a consultation with his associate, an opthalmic surgeon specializing in eye muscle issues, they sent me to a neuro-opthalmologist specializing in muscle testing. This is where in my story the Tensilon test confirmed the presence of MG.

After that I was referred to a general neurologist who was able to rule out other neurological conditions that may have been mimicking MG such as a brain aneurysm, etc. He in turn recommended me to my current MG specialist.

In any case, I am at two years two months into MG symptoms. As I understand it, this should put me at a lower risk of developing the more serious forms of the disease; I have been repeatedly checked for degenerative signs, and I can report that there has not been any degradation of any muscles or breathing-related issues.

This is especially significant due to my recent bout with a serious pneumonia. During one of my hospital stays, I underwent a CT-Scan primarily to check for pneumonia symptoms, and they also definively determined I have no thymoma condition. Thus, at my age [62] this should also not likely become a problem.

Thus, it is apparently appropriate to treat me as an Ocular MG patient with therapies consistent with this particular variant of the disease.

Thank you especially for the reference to Methotrexate. Curiously the Wikipedia material doesn't mention MG as an application for this drug. I will discuss this with my neurologist at our next upcoming meeting. [I am scheduled for my next IVIG treatment of 400 ml Gamma-Gard in eleven days in his office.]

In reading over the material with regard to IVIG: Is it true that currently, there is still no clear theory as to how/why it works on MG? And can I assume that obtaining only a partial remedy is a typical response to the drug? [As long as I can still work, which requires a lot of computer-related typing, I can hold out with this level of vision restoration. Fortunately, a goodly part of my work involves telecommunication; for the rest I rely on public transportation or the charity of others.]

cjl

Last Edited on 14-Jun-2009 2:10 PM

I was just wondering how you are, have you met your surgeon yet. i have recently had a thymecotomy 5 weeks ago and my surgeon said it was best to have the the full sternotomy as it will make it easier to get all of the thymus gland out. i had the surgery on the monday and i was out of the hospital on the the thursday yes that is 4 days which is good. a word of warning have a very good chat to the anaesthetist as i had concerns about being put to sleep but she was brillant, she warned me that i might be on a resperator for a while after surgery and i would be in intensive care which i was for 24 hours but i did not need the resperator when you see your surgeon take a list of questions with and dont leave untill you have all the answers. Things you might need around the house all depends on how they do the op i have found that a bean bag and loads of pillows to sleep with help as you cannot lay flat for a litle while also on your way home from the hospital take a pillow with you to put in between you and the seat belt as if you get stop by the police and you are not wearing a seat belt they might still give you a fine. But basicly take things easy but keep mobile if you can as it all helps in the recovery process. if you are in pain take pain killers dont try and last it like i did and let it become unbarable then it just seam like you were in pain all the time. if you have any questions please eamil me one my email address.
please let me know how things go.

kind regards
zoe

Can anyone relate to a site reaction to IVIG? This time around, the infusion rate was raised from 100 ml/hr to 125. The treatment thus took only little more than 3 hours at that fast a rate; previous took 4 at the lower rate.

No pain, but I developed a "bump" of around 40 cm across that was roughly circular. It was raised up maybe 5 cm at the "peak" which wasn't particularly higher than the rest. About 80% of it was gone in about three hours, and just about all of it in two days, although I still have a barely noticable [to me] rise in the area, but miniscule; it is also tender when firmly pressed, but only slightly.

I also had a cyanotic look showing blue in the fingernails, noticed by the IV nurse. She checked my vitals, but my pulse-O2 was coming up to about 94-95 as I was waking up [I fell asleep during the infusion], and I wasn't dizzy; I was quite relaxed and BP was 100/60, which is fine [I have slight hypotension]. The blue disappeared completely in about two hours.

cjl

sorry to hear about your bad experience,

unfortunately, adverse reaction to IVIG, some quite serious, are not rare.

like every thing in life, you have to fall in the right side of the statistics.

hope you are better soon,

alice

im just wondering how long these side effects last as i read it should only be 48 hrs but i have been out of hospital since fri and no ivig since last wed i thought it would be better by now. think ill phone the doc to get some good pain killers and migrane meds anyway to be safe.

I had a fairly severe anaphylactoid reaction to IVIG, that required giving the drip over 20 hours, with premedication, but even then, I would have severe generalized weakness (even if I would come , in a relatively good state), headaches on and off, although they gradually got less severe, and I would only need pain killers on the first few days, but I also had episodes of severe weakness and shortness of breath, which were even more hechtic then my "crazy" illness (I could go from being able to perform a bone marrow biopsy, which requires quite a lot of strengh to hardly being able to move within a very short time, and vice versa), I didn't have any nausea or vomiting, though.

this usually lasted for about two weeks. the allergy/immunology specialist that was eventually consulted told me that it could be part of it, as those reactions can take some time to get better.

it got to the point that no one (including myself) was able to tell if I responded to IVIG (because I did have days in which I felt almost healthy), but had worsening of my symptoms due to this severe reaction, or didn't have any significant response.

after a few months, we decided that it didn't really matter, because overall, apart from a few days here and there, it made me worse.

I wasn't sure I should tell you all that ( and in retrospect I probably should have), when you first asked about IVIG, as I know that my course and response to medication is exteremly unusual.

but, as you unfortuantely had a pretty bad adverse reaction yourself, I want you to know that you are not the only one. and give you as much information as I can.

hope this helps,

and good luck with your surgery, and I am sure they will postpone it, if they don't think you are in a good enough condition, and possibly by thursday you will be feeling even better. (as at least for me the headaches got much less severe with time).

alice