Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Neurology appointment update:
I went to my appointment yesterday. I had taken my morning mestinon at 7, and my next dose was due at noon. My appt was scheduled for 1130, and he kept me waiting in the waiting room until 1215!!! Needless to say my eyes were misbehaving badly in there. The right one couldn't stay midline with focus into the distance. He again reiterated over and over how myasthenia is not a "slam dunk diagnosis" with me. I have negative antibodies, an "unclear" SMFEMG, and an "incomplete response to IVIG".
What the heck?!!! I'm so sick of not knowing what's going on. He told me to take my mestinon when I left (1:15) and time when my vision cleared up. It didn't clear really . He put me back on for ivig today and tomorrow starting at 3 pm. He was going to anyway, decided at the visit. I'm not sure why mestinon is not a miracle drug for me, either. During the visit he was scanning through my head MRI pics over and over again. We know I have a 6th cranial nerve palsy, and he can't find MS lesions. It's confusing to him why my symptoms are so bad in the morning, as well. He kept talking about how MS is not variable throughout he day. Then asked me to call him when my mestinon kicked in and symptoms abated. He still is confused with my diagnosis!!! ;(
Next steps are IVIG today and tomorrow, follow up with him on September 9, and second opinion with another neurologist in his practice (Roomet, the doc close to retirement, I had his name wrong earlier posts), and I need to choose either cellcept or Imuran to start. I'm so frustrated with my body and how it confuses the neurologist!
I'm working on this depression problem with Cognitive Behavioral Therapy, but how can I bend this situation to not be what it is? I am thankful that I can breathe well and walk, and to have my healthy family. I don't want to sound like a whiner, and that's how I feel, like I should t be complaining when so many other have it worse. Right now I take Wellbutrin XL 300 mg in the morning, but it isn't doing crap for me. I keep crying at every little thing.
I went to my appointment yesterday. I had taken my morning mestinon at 7, and my next dose was due at noon. My appt was scheduled for 1130, and he kept me waiting in the waiting room until 1215!!! Needless to say my eyes were misbehaving badly in there. The right one couldn't stay midline with focus into the distance. He again reiterated over and over how myasthenia is not a "slam dunk diagnosis" with me. I have negative antibodies, an "unclear" SMFEMG, and an "incomplete response to IVIG".
What the heck?!!! I'm so sick of not knowing what's going on. He told me to take my mestinon when I left (1:15) and time when my vision cleared up. It didn't clear really . He put me back on for ivig today and tomorrow starting at 3 pm. He was going to anyway, decided at the visit. I'm not sure why mestinon is not a miracle drug for me, either. During the visit he was scanning through my head MRI pics over and over again. We know I have a 6th cranial nerve palsy, and he can't find MS lesions. It's confusing to him why my symptoms are so bad in the morning, as well. He kept talking about how MS is not variable throughout he day. Then asked me to call him when my mestinon kicked in and symptoms abated. He still is confused with my diagnosis!!! ;(
Next steps are IVIG today and tomorrow, follow up with him on September 9, and second opinion with another neurologist in his practice (Roomet, the doc close to retirement, I had his name wrong earlier posts), and I need to choose either cellcept or Imuran to start. I'm so frustrated with my body and how it confuses the neurologist!
I'm working on this depression problem with Cognitive Behavioral Therapy, but how can I bend this situation to not be what it is? I am thankful that I can breathe well and walk, and to have my healthy family. I don't want to sound like a whiner, and that's how I feel, like I should t be complaining when so many other have it worse. Right now I take Wellbutrin XL 300 mg in the morning, but it isn't doing crap for me. I keep crying at every little thing.
I was on Mestinon and then Mestinon Timespan but both of these did absolutely nothing for me. No difference with them or without. So I took myself off them as it was a waste of time. I can't take steroids so they ruled that out. I now take Imuran and that has seemed to help with the exhaustion and choking. I do take Imuran for other reasons but the off side to it is that it helps my MG. It does take months and months to see any improvement which is generally gradual.
I know it is hard going through all of this. Keeping you in my thoughts and prayers.
I am so sorry to hear about everything you are going through! Not having answers is really frustrating and it's hard to know how to deal with something if you don't know what it is. I hope that you get some answers soon and that things get better for you soon!
Caroline
I did want to mention that mestinon rarely helps my ptosis. It does improve my diplopia but not the blurry vision. Go figure. I wanted to pass along one of my experiences thought that might help.
I noticed that I could feel the mestinon wearing off, which others have mentioned before. I found that if I let it wear off completely before I take my next dose, it hardly helped at all. So I worked with my neuro to establish when the most optimum time to take my next dose. Essentially what I realized is that if I took my next dose before the entire previous dose was out of my system that I responded much better. If I let it go too long between doses it was like taking an aspirin. Ultimately what came of it was a lower dose taken more frequently. It's a pain in the butt taking it four times a day but I feel so much better. I think that might help you more than your high doses that are so far apart. It's just a thought but it really worked for me. Perhaps you could consider trying this but please talk with your neuro about that possibility.
I actually take 450 mg of Wellbutrin AND 20 mg Citalopram which seems to be keeping the depression mostly at bay. It took a while to find the right combination though and it wasn't easy.
Please keep us posted. I am anxious to hear how your situation progresses. Many hugs to you. I will be thinking about you.
Good luck to you and I'm praying that you find your solution.
Aloha,
Angie
I have benefitted for about 2 months now from my 5 day IVIG in the first week of June. Some of the symptoms are creepng back, but overall I'm still seeing benefit from the IVIG
I hope the headache dissipates soon, dont be a bashful about asking for meds for the headache, my neurologist gave me oxycodone to help out and it really made a difference.
Take care - feel better soon :-)
Joe
Joe
I did something odd yesterday. I took mestinon yesterday morning at 0800 and then just didn't take any through the rest of the day/ night. I wanted to see if I would get significantly worse without it. I think my double vision was the same. I'm just so frustrated at the questionable diagnosis! I thought perhaps I would start slurring and stuff, but I didn't. I wonder if this means anything.
I had the best 2 months in a long time (June & July) while heat still bothered me, for the most part I was 90% symptom free. In the last week though MG has been returning from its 'summer vacation' to get back to work on me :-). Yesterday I started having breathing problems again.
As far as the headaches I believe you are right the treatment for AM is pretty straightforward and it seems in most they just run their course. I know it's not ideal to be dealing with a migraine, but hopefully it will fade soon and then you can enjoy a couple of symptom free months. For the headaches I found that the Tylenol and NSAIDs did not touch mine, I ended up taking 5mg of oxycodone to manage them.
A question for all here is, what's next?? We get our IVIG, hopefully with minimal side effects and in time it wears off, what do we do in the long run?
I hope you feel better soon :-)
Joe
Although Mestinon, prednisone, IVIG, and PLEX are quick acting, when you respond, they are not ideal long term treatments. Some people go into remission on their own, for reasons unknown, just like we don't know exactly why we start having problems in the first place.
Long term treatments are immunosuppressants, like Imuran, Cellcept, Tacrolimus, etc. They are not ideal either. Newer more specific drugs like Rituximab and Eculizumab are horribly expensive, but available if you can get on a protocol or convince your insurance company you are worth the investment, most off label. There are attempts to deliver drugs directly to the cells causing the problems, mostly in mice, and other attempts to retrain cells to recognize antigens as self. These newer studies depend on knowing the antigen and antibody responsible for the problem (as I read them). Most of us are just buying time with treatments.
Thymectomy is a subject unto itself and the study is ongoing. trying to understand mechanisms with genome studies are also ongoing. How much basic science is being done is anyone's guess, doesn't get the press. Treatment is better and going to improve, but prevention and understanding still have a long way to go. b.
I am unsure about whether the Mestinon is working or not. Yesterday I only took it once to see if my vision would worsen drastically, but it did not. I thought I was getting benefit from taking the Mestinon, but I'm not sure. My slurred speech has not returned in a week.
As for the immunosuppressants, I am afraid to take something just in case I really don't have myasthenia. Wouldn't it be crazy to take something if I really didn't have a clear diagnosis? I am overly scared of everything, since I tend to be in the "less than 1%" in all areas. I checked with my neurologist, and he says he wants me to choose between Imuran and Cellcept. He is doing a trial now with methotrexate for MG patients, but he told me he doesn't want me to consider that. He didn't give me a deadline for my choice, but my next visit with him is September 9.
Remember neither med (imuran or cellcept) suppresses your white blood cell count below the low end of normal as long as the dose is appropriately managed. The goal is to just lower the intial intensity of the immune response, not stop it or limit its response. If you get an infection while taking imuran you will still have the normal immune reaction including greatly increased white blood cell counts neutrophils etc.
As far as the Mestinon, one question Erica, has it ever for any MG symptom definitively helped? That doesnt have to mean fully resolved teh symptom, but has the improvemnts been enough to say it helped. Did you feel stronger in any way?
We know MG varies day to day and place to place that it affects in our bodies. We also know that IVIG starts working within a few days of starting the treatment. Not needing as much Mestinon for a day or so after the IVIG has started now is an encouraging sign that you are having a beneficial response to an immune related issue, the question is, is it MG. If you can say that at certain points in time that mestinon has had a beneficial response to any symptom of MG, you have a very high likelihood of having MG. Mestinon simply does not treat anything else like MG (or LEMS to a degree)
The varying nature of MG and that there are areas o the body that are harder to treat, does make it hard for us patients to convince ourselves of not only the symptoms but also the efficacy of the treatments.
I'm glad the headache is gone, hang in there this diagnostic picture will sort itself out in time.
Joe