First Ivig treatment
 

I had my first IVIG treatment yesterday. Everything went very well. The nurses were real sweet. The infusion center bought my wife and I lunch. They had TV, WI-FI, CD player, lounge chairs. And a snack room with about anything you would want. This was at the CMC infusion center in Charlotte. My local hospital is not equipped for IVIG but Charlotte infusion center is only 30 minutes away.

The actual infusion took about 2 hours. I was given an un-medicated dose my Neuro wanted to see how I did on that. They started out slow and checked on me about every 20 minutes and increased the dose. As of this morning I don’t have any side effects nor do I see any change in my symptoms. I have another treatment this morning so we left the shunt in my arm so all we have to do is plug in. The nurse said I could see some changes by the weekend. I have 2 more treatments next week. Got my fingers crossed that I can see normal again.
Mike

Hi Mike,

thats wonderful that everything went well, here's hoping you can have the 2 treatments next week. Got my fingers crossed as well. sounds like a great place to get treatment, my little local hospital is great to, but not with all those extras
Kate

Thanks Kate, I was just so nervous and did not know what to expect. Everything about this disease is so unknown. I wanted others to understand the IVIG treatment is not really as bad as it sounds. They scare everyone to death with the description of all the side effects which usually bother the minority.
Mike

Yes I agree, in fact I spend the day reading and listening to music, if I get a good Dr to insert the iv, its uaually a good day. Last time I had headaches, but I think that was from a bit of dehydration.
How are you doing???

Mike,

Glad to hear your first IVIG treatment went well. Good luck with your furure treatments!

Rachel

Mike, That's so great that it went well. Keep drinking water, taking Tylenol, etc. Are you taking any Benadryl?

I hope your sister is doing well too.

Annie

I had my second treatment yesterday. It actually went better than the first. I called the infusion center when I left home and they ordered my IVIG so when I arrived 30 minutes later the IVIG was there waiting for me. I already had the IV shunt in so all they had to do was plug me in. It took 2 ½ hours to complete. Again it was the unmedicated version. When the treatment was done I was very light headed, weak and unsteady on my feet. When I got home I laid down for a short nap. When my nap was over I felt a lot better. I have 2 treatments next week. Thus far I have not had any reactions or side effects. Yesterday before my treatment I had a very slight headache but that could have been just pure stress. This morning I feel as I normally do.

Annieb3 I haven’t taken any Benadryl. As for my sister her single fiber test at UNC came back negative. It is back to the drawing board. We suspect it might be atonic seizures. She just needs more tests done I guess.
Mike

Well, seizures don't cause AChR antibodies. ;)

I agree but the doctor at UNC did single fiber and said it wasn't MG. This morning she told me that she could hold her finger up and stare at it and her eye would close within 10-15 seconds. I told her she needs to see a neuro-opto maybe he could figure it out.
Thanks
Mike

SFEMG's can be normal in MG. Was the person who did the SFEMG an expert? Or a resident?

It was Dr Howard at UNC. He is supposed to be a leading MG expert.

I actually find that hysterical. I saw him twice. One SFEMG was negative, one was borderline. Yeah, borderline. I had AChR modulating antibodies too, which a small percentage of MG patients have. Some have binding only, some modulating only and some with both.

MG is a clinical, not psychological, diagnosis that is backed up, not backed down, with tests. Negative SFEMG's don't necessarily prove you don't have MG. A negative doesn't prove a positive. She should get a muscle biopsy at Johns Hopkins if she continues to show signs of MG.

If your sister has any breathing issues, she should see a pulmonologist for an evaluation. If she indeed does have MG, as I do, then she needs to be careful.

Sorry, didn't mean to get off topic. I hope your IVIG continues to make you feel better.

Annie

Annie I just talked to my sister and she was floored by what you said. So who and how were you dx'ed? Her doctor today talked about sending her to Duke.
You are a sweetheart
Mike

Duke would be fine but they tend to give patients to residents and not "real" doctors. ;) Residents are doctors too but sometimes they act like know-it-all's before knowing it all, which they never can. She has to be referred by someone. Maybe Tyson can give you the name of the doctor he saw and liked.

I was diagnosed ten years ago (yesterday actually) by a doctor in Florida who is an MG expert and MDA Director. Very highly regarded. He doesn't do SFEMG's anymore so I went to Dr. Howard to have it done. My story is long and complicated. I had modulating antibodies that were kept from me for seven years. Yeah, real nice. I have had MG my entire life. Again, long story. It would be easier to send you a copy of my book, if it ever gets published, than to write it here.

My clinical exam is classic MG. Every single thing about it. My breathing tests are typical MG. My MG crisis was typical. My Tensilon test was highly positive, after only 2 mg. of it (they can give up to 10 mg.). I have photographs clearly showing my entire face drooping and then one after I had steroids that makes me look like I had a facelift. Scary. :eek:

We MGers who don't have "scream in your face MG" may need to do more documenting like that. And don't forget that antibody tests come and go as far as being positive. My modulating antibodies are either in the range or above. I am on Flovent, so tests may not be accurate since steroids reduce the immune response and, therefore, signs of the disease.

A second opinion is a good idea but you need to consider a couple of things first. Seeing more than one doctor might be seen as "doctor hopping or shopping," meaning a patient is trying to find a doctor who will confirm something that isn't there. As if. :rolleyes: Be sure the doctor you go to for the 2nd opinion has a lot of experience. It might even be a good idea to consider seeing the doctor that Stellatum/Abby saw in Boston. Maybe after all that snow melts.

If Dr. Howard only did the SFEMG and not a thorough clinical exam, then his conclusions are all based only on a negative test. Oh if only MG were so simple.

So one MG test was positive and the other was negative. Why is the negative one the "true" one and the positive one "discarded?" Not very scientific. Why neurologists do this is completely silly and is based on them thinking that the SFEMG is somehow infallible. Like doctors are. Trends in tests are important too. Does she have copies of all of her test results?

What I really find scary, and maddening, is that someone with MG can have their very life threatened, so to ignore signs of a disease like MG, in my opinion, is not only dangerous but unethical. Nope, I'm not calling Dr. Howard unethical. Not at all. He ran a test and came to conclusions that he is highly qualified to do. But you have to take in ALL of the facts with MG.

I hope she gets it all figured out. Let me know if I can help.

Annie

I'm sure my sister will read this in the morning and I will let you know if she has questions.
Thanks
Mike

The great thing about this guy (send me a private message for his name) is that I am seronegative (antibody tests negative) and had previously had two SFEMGs: one "borderline" and one mildly abnormal, but not (according to the neurologist who did it) abnormal enough to indicate MG. This doctor in Boston specializes in occular myasthenia, but he saw me even though I have only very mild eye symptoms. He did a different kind of SFEMG (stimulated SFEMG--means he used pulses of electricity to make the muscles twitch instead of asking me to clench them), and he did it on my face. To him the test was clearly positive, and I am now diagnosed.

He also said he saw things about my eyes that he's only seen in MG patients, specifically "Cogan's lid twitch." This is remarkable especially because I don't have ptosis.

I don't know if your sister is close to Boston, but if you could get to him, he sounds like he'd be helpful.

Abby

Abby thanks for the offer I'll see what my sister says. She is really discouraged with this whole deal. She has a hard time understanding why these doctors can't find what is wrong with her. I tried to explain to her that it is a rare disease and doctors just don't have a grip on it. In my case the trearments are just as bad. It is all trial and error.
Mike

Update
 

I have now completed 4 treatments. I have one more next week. The neuro spread them out over a 3 week period. All treatments went well without any reactions.

Now the bad news. These treatments have not done a thing for my vision or muscle weakness. Matter of fact I now am starting to have problems with my neck. I'm not sure what the next course of treatment will be.

Update on my sister. She is now in denial. She is a very stuborn lady. I guess we gave her news she didn't want to hear. I'm sure she was convinced she was clear of MG when her tests came back negative.
Mike

Sorry to hear your news. Maybe there will be a cumulative effect (?) - I would hope that would be the case for you.

Ditto on what Sue said. I don't have any experience with IVIG, but even if I did I do know that everyone can react a bit differently.

What's the neck issue? More weakness? Have you backed off of Mestinon to see if you don't need as much now that you've had IVIG? If IVIG improves your MG, then taking too much Mestinon would make you "seem" like you are worse when you are indeed better. Too much Mestinon and you get weaker. Don't forget that. How are you between doses of Mestinon?

Annie

Annie there has been no change in my vision. My strength seems to be a bit better. I worked in the yard for about 2 hours the last couple of days without getting very tired. The neck thing just started. It starts sagging and hurts when I straighten it up. It feels as if my head weighs 100lbs. I don't think it's the mestinon.
Mike

I would then say to call your doctor in case it's aseptic meningitis!

http://emedicine.medscape.com/article/1169489-overview