Myasthenia Gravis

Actually I thought of you when all of this transpired since you were about the only one on this website who got IVIG more frequent than I did. My antibody test came back negative too. Also a MuSK antibody was negative. Nothing showed up in the blood work, except atypical white cells and inflamation. A percentage of people test negative for all of the known antibodies for MG, but still have it. The single fiber is very specific for MG, also ALS but I don’t have that. I will tell you that when I first took the Mestinon, the feeling of improvement was short lived. Actually after about an hour I felt “worse”. Very heavy again, floppy in the neck, etc. I was concerned that it wasn’t working, or that it was making me worse. In fact, that is how I feel all of the time without the medication. I didn’t realize how bad I was until I was good if that makes sense. I started with 60 mg three times a day and now take 120 mg every two hours. That seems to hold me pretty good. I don’t know if it would be worth asking for either the SF EMG, or another trial of Mestinon and see if it helps. You can take something like 25 pills day, so my two every two hours is within reason. However most people take just a few pills a day. If you had improvement, ince Mestinon mostly only works for MG, it might be worth pursuing. Gabrielle

[QUOTE=Kazza]Hi Gabrielle,
I am so glad you are feeling a lot better. I have CIDP and during my first attack (several years ago) it was thought that I had MG – and I was given mestinon to try – but when my antibody test for MG came back negative I was taken off it. I must say though, after taking the medication I noticed I had more strength and was able to feed myself or have a shower but the strength only lasted for about half an hour and then the dreaded weakness returned.
I hope you continue to improve!

Kazza[/QUOTE]

The disease itself is not painful, but my muscles ache all of the time. Mainly in my upper arms and thighs. Before I was taking any medicine, meaning IVIG or Mestinon, it was fairly intense. If I didn’t do any activity, I was fine. It is a very fascinating disease, in that it improves with the Mestinon. I can go from a scooter to walking within 30 minutes. In fact, just to get the SF EMG, you have to not take the pills for a day or so. Well I could barely get in the doctors office, and was able to walk out nearly normal. Everyone probably thought I had some miracle treatment inside:)

[QUOTE=tara74]wow that is interesting. I was actually looking around on the internet for a case like yours. my doctor says It might be MG but it “might” be alot of things. I found an abstract about a case were a man had GBS and then had it again along with MG so I wondered if it was possible for gbs to turn into MG. Is it a painful disease? I here its not but I also here that cidp and ms are not either and we know thats not true. anyway I am happy for you and thanks for posting the news.[/QUOTE]

No, the sensory aspects are not common, if at all, with MG. I still have one large area on my lower right leg and one on my left foot that “feels funny”. And I don’t have ankle reflexes either, but the rest are intact. So, for those reasons she is thinking it may be GBS converting to MG. As I got worse, I/we assumed it was CIDP progressing, but in fact it may have been MG. I don’t have ptosis that is obvious, but I can tell, now that it has been pointed out, that I don’t really have much facial expression. I was unable to hold my eyebrow up for the length of the SF EMG, and since I don’t do that too frequently:), I guess I would never know. It might be worth asking about next time you visit. There really are a lot of common things with the two, but if you have definite evidence of demyelination on your nerve conductions, it may just be CIDP alone. There should not be any nerve conduction problems in MG, which is why my case was puzzling. Good luck to you, you are still my marathon inspiration:)

[QUOTE=Kazza]Thank you for the advice Gabrielle. I know that I fit the diagnostic criteria (and have been diagnosed as such) for CIDP but as my cranial nerves are just as badly affected as my legs and arms, I’ll mention this again to my Neuro. I still can’t look upwards for too long (even after all these years after my first attack) or I’ll develop ptosis.
I noted that you have sensory symptoms with your MG – Is that common? Are your reflexes affected? Mine are absent.

Kazza[/QUOTE]

You are correct in stating that it would be strange to walk normal with CIPD one hour and not be able to walk normal the hour before. That was a big question all along with me, and I figured it was an inflammation thing, that after I had the IVIG, it decreased some of the inflammation. In fact, you can’t remyelinate that quickly, within an hour, if that makes sense. Recovering from GBS can be a long process, as you know, and some of the folks on this site have lingering effects, small or large, that last for a while. I found, with time, it is easier to focus on other things in my life, rather than what I can’t do, or have a hard time doing. It can always be worse and there is always someone in worse shape. Good luck to you, and maybe keeping a log of how you feel would help you with your physician. Happy New Year too:)

[QUOTE=tara74]my weakness comes and goes so quikly and lately I have had no sensory symptoms accept pain. its like the muscle on the inside of my leg is numb but my skin is not. I go not just day by day or hour by hour but minute by minute with my level of weakness. you said that your weakness leaves shortly after you take your meds I find that interesting. I would think that if I had CIDP, it would take longer to heal going from shuffling my legs one hour to walking normal the next. I started out with a very suspicious bout of GBS. I was paralyzed in hours and the PE wiped it out in days two weeks after onset I walked out of the hospital like nothing happened. back then I had sensory symptoms and an emg that was consistant with GBS but now I have no EMG findings. who knows there is so much going on its hard to sort out.[/QUOTE]

The usual onset of MG is with the face. Although there are variants of GBS/CIDP that present that way too, as well as a myriad of other diseases! I didn’t present with facial that I knew of, just primary arm and leg weakness. Not common to present that way, but it does happen, and makes a diagnosis a little more difficult. Funny I have a crooked smile too. I don’t know it unless I look at a picture and then realize “why is my lip dropped down”. The good thing is I won’t need Botox for my eyebrows or wrinkles!!! I would ask your neuro, just run it by them to see if it is worth a SF EMG. It is not an expensive test, just hard to find someone who is skilled at doing it. Or he may say no, he is certain of your diagnosis. Happy New Year, which I see already passed in your neck of the woods!

[QUOTE=Kazza]Good luck to you too Gabrielle 🙂
I actually tried holding my eyebrows up just before – it is quite a hard thing for me to do and really tiring! Yes, it’s something that I wasn’t aware that I found difficult either. I know that after my first attack I couldn’t smile for weeks – those muscles wouldn’t work properly. I can smile now though – it just gets a bit lopsided if I am tired.

Kazza[/QUOTE]