This is my first post sorry so long but I find it very hard to focus my thoughts and write (which is especially concerning as my occupation depends on that skill).

I had a very severe case of Guillain Barre Syndrome (GBS) in 1984. I was paralyzed from neck down for about 4 months (no plasmapherisis) and although I had problems over the years they were not disabling but the problems were getting very bad this year. I assumed my problems were related to the GBS so I did some research and found chief of the neurology department at USF in Tampa (about 250+ miles away from me) who was highly recommended for his knowledge of GBS. I saw him on July 19 and he told me he thought I had MG and sent me on my way saying someone would be in touch to schedule tests. Last week they sent me email they scheduled EMG for September 6, nearly 2 months away.

I have previously been diagnosed with Hashimoto's and have been on Synthroid and Cytomel since 1/2007.

My recent blood tests were negative for Acetycholine Receptor Binding/Blocking/Modulating antibodies, negative for Lyme but Epstein Barr AB positive > 5 and although on 7/5/12 ANA was negative, on 7/21/12 ANA IFA Screen was positive wth nucleolar pattern and 1:40 H titer????).

In the meantime I did lots of reading about MG and thankfully found this website. I now realize I have many symptons of MG some of which I didnt even realize were actual symptons.

I have always been very active and had a "suck it up" mentality but my condition is getting worse every single day and I am not able to really do anything at all now. I am a family lawyer with my own practice but I havent been able to work much in the last 3-4 weeks and if I cant work, I cant pay bills or my $1200.00 monthly health insurance premium. Today I had to cancel a deposition and a court hearing tomorrow (which is something I have never once done in 13 years of practicing).

I have tried reaching out to USF doctor but he was out of the office last week and although I sent him emails advising him how condition has worsened I havent heard from him yet today. I am disheartened by the casual way in which he mentioned he thought I had MG and then sent me on my way with followup so far out.

Of course, he did say if you are having trouble breathing go an emergency room. Saturday night my breathing was very difficult but after reading how most medical profesionals dont know/understand MG I was afraid to go to local emergency room. I learned when breathing gets difficult I can manage it if I lay down, dont talk and do nothing. That is not something I wish to do for the next 2 months though.

I have done some more research and found that the University of Miami Medical School (which is only about 30 miles away) has a very large neurology department.

It seems to me if this is something that can be diagnosed why am I laying around doing nothing when I could start getting treatment? I can understand dont treat until we know but then why not immediately do the tests? Keep in mind I have had worsening identifiable MG symptoms for a minimum of 6 months but the last 4-6 weeks I have been getting worse daily.

I am interested to know if anyone on this forum goes to UM dr. or can give me an opinion about what I should do now/today. Am I being unreasonable expecting some additional testing/treatment right away? Perhaps I should go to emergency room where UM neurologists are on staff?

Thanks in advance for your time and insight.

Stephanie

Hi Stephanie,

Welcome! This is a great group, and I also wanted to let you know about another online group that is very active with MG. Check out dailystrength and find their group for myasthenia gravis. Between this one and the other one, I've found a lot of help and information!

restorativepose

Stephanie, it's interesting that you saw a GBS expert, because he would know the difference between MG and CIDP, which is a chronic form of GBS.

I was in your position for a while. My doctor recommended a neurologist but I couldn't get an appointment for three months. Meanwhile I went to the ER during an especially weak time in the hopes that the resident neurologist could speed things up. It didn't work for me, but it might work for you. The reason it didn't help me is that my symptoms at the time were not typical of MG and no one so far had even suggested I might have MG. The neurologist at the hospital checked me for brain lesions, saw I wasn't in any immediate danger, tested my blood for whatever she could think of, and sent me home to wait for my neurologist appointment.

At one point I was already a patient of my current neurologist, and he was unable to diagnose me (I am seronegative and my SFEMG's weren't conclusive). He was planning to just keep seeing me every six months. I made an earlier appointment just to tell him: I'm getting worse. I can't live my normal life. We have to do something, and we have to do it immediately.

He responded very well to that. He sent me to another neurologist, in a different city, with a reputation for being able to diagnose difficult neuromuscular diseases, and that's how I got my diagnosis.

I don't know if a similar strategy would help you, but I'm telling you my story so you can consider your options. I'm so sorry you're in this position.

Abby

Sorry you are going through this. I just have to say...GO TO THE ER when you are having problems! Yes, sometimes the doctors may not know a lot about MG, but lots of times they DO! I live in a town of 20K people and every time I've shown up in our tiny rural ER (over a 12 year period) I was taken seriously and treated well. I might add that each time I have also seen a different doctor. Please don't let a few angry, frustrated posts keep you from seeking help!

If you need ER, get someone to take you, or call 911. Once you get there, tell them you are in the midst of being diagnosed with MG and things have gone south. You might even want to pre-emptively print out some brief, concise info on MG, and include the name/number of the doctor you are scheduled to see. Heck, you might even get a more timely referral to a different doc in ER!

I'm sorry about your law practice and the problems with that. I eventually lost my career (in medical field) to MG, and it's devastating. However, since you haven't even begun a treatment yet, it's way early to throw in the towel. At this point, you just need some help---YESTERDAY!

Good luck. Keep posting!

First of all....Welcome!! ....and then sorry you needed to find us!

That said, I would call neuros office and ask what options there are for moving up the EMG (and be sure they are scheduling a SFEMG at the same time!). Let them know your breathing has been concerning at different times, is there a way to move up the EMG .... oh and if I need to go to the ER, will Doctor ... be the doctor of record. (that and the fact that you are a lawyer might spur them into action!!)

If they don't 'bite' then you wither have to wait...or begin the search for a new neuro.

Good Luck!

Thanks for everyone's insight and advice. Honestly if it wasn't for everyone on this list sharing their experiences, I would believe I was losing my mind! So again, thanks.

I went to university of Miami hospital and was admitted yesterday. At first I was optimistic they were going to hellp me but about an hour ago i had the misfortune of being seen by a dr sharma came in with a large group of young doctors (two of whom I saw yesterday and had great confidence in) and I am sitting here frustrated bcs I feel like I am back at square one! I could tell he was being very dismissive, actually said out loud, you don't have guillain barre! Really, wow what a rocket scientist! I had that in 1984, I didn't need to see him to know that. I knew i had aproblem when he said I think you need to adjust your thyroid med's (duh, tied that for a couple years already)

Now a blood guy came in saying dr sharma wants to check your potassium. Another duh, first of all has been checked for years and always been ok, I even gave them copies of potassium test from 7/21 and it was fine then...

Anyway, I have asked nurse to get the dr from yesterday back so I can talk to her and get back on track instead of going in circles.

Sorry you're doing poorly enough to be hospitalized. Have you told them that you are in the process of being diagnosed with MG?

I hope you get connected with the doctor from yesterday. Do you have anyone with you at the hospital? Sometimes that will help.

Be persistent, and try not to display too much frustration, as that tends to "shut down" any communication. Just use your persistent language!

Hang in there!

Hi Steph,

I feel your pain, I was admitted to the hospital last week with similar breathing problems, and was also treated like junk because I haven't been formally dx'd with mg.

From the perspective of the hospital staff, even though I respond to mestinon and have all the mg symptoms, they just wouldn't go there.

So therefore, they decided to check all these other things.... cardiac, pulmonary, etc etc.

Hindsight being 20/20, I know I did the right thing by going to the ER. The generalized weakness was getting worse and worse and it started affecting my breathing, creating shallow breathing and low oxygen in my blood.

The thing I'd have done differently is done my research ahead of time to find a hospital (in network for insurance) that has an inpatient neurology unit. That would have increased my chances of someone actually *considering* that this is MG and an MG treatment may help.

Feel better!

My doctor is of the opinion that if mestinon helps at all, it is MG. Period. No question. I wonder if he is right.

I don't claim to be an expert but I believe he is correct. I have read many times Mestinon only helps MG and makes all others ill.
Mike