Frustrated and dont know what to do
 

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!

Update
 

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

That's what my neuro says. On last visit, she said only someone with MG could tolerate the doses of Mestinon I take daily. So she's confident it's MG but has nothing test-wise to prove it! (which bothers her not at all!!)

I'm also one of those who received a "positive" diagnosis based on response to Mestinon - all of the other tests were within a normal range.

The most important thing that I have found over the years is to trust your instincts - that's true of everything, not just MG. The thing with MG is that the symptoms can be so subtle that people on the outside looking in just can't "see" what we do. We know what "normal" for us is, but a doctor who is only seeing us at a particular moment in time can only make a judgment based on what their eyes - and test results - tell them.

As far as the hospitals go, we have to remember that only about 600 people a year get diagnosed with MG in this country - that's an average of 12 people PER STATE (obviously there are more diagnosed in states with larger populations, but you get my point).

What I'm trying to say is that MG is not something that most doctors see. For most people - especially those whose case is caught early - the diagnosis is one of elimination. Doctors rule out all of the "usual suspects" first - they are told in medical school that most cases are "horses", not zebras (there are very few exotic cases).

I had one doctor tell me, "Be happy - you really don't want to have MG" - well.....duh.

But if that's what I had, I sure as heck wanted to know; once we have a name, we can start being pro-active. If we don't have a name for what is bothering us - and yet we KNOW that something isn't right - then we start to think that we are either going crazy or we are a hypochondriac.

Keep being persistent. In the meantime, take it easy - as you have already discovered, overdoing it will land you in the hospital, unable to breathe. If you find yourself short of breath, go to the ER, tell them that you are in the process of being evaluated for MG, and insist that they have mechanical ventilation close by. If possible, take a friend or family member with you who can monitor you closely - if your lung muscles stop working, seconds literally count.

And bear in mind that an ER deals with "emergent" situations - their job is to stabilize patients until they can be seen by a regular physician for longer term care. All of the "unnecessary" tests that they do are more CYA than anything else - if things go south, they have to be able to show that they ran all of the "right" tests.

If you do get admitted and you don't like the doctor who has been assigned to you, then INSIST on a different doctor. Most hospitals just arbitrarily assign one to a patient; you have the right to change doctors if you aren't happy with the one that you got. If you know a good neurologist in the area, ask if they can be your doctor. If you have a regular doctor, ask them for a recommendation - they know who the "good" ones are (my regular M.D. has ALWAYS referred me to great specialists, and I have called her office before for hospital reco's, too).

With the age of the Internet, we have more resources than ever at our disposal - doctors see hundreds of patients in the course of a year for a few minutes apiece. We "see" ONE patient 24/7 - who do you think knows more about what happens day-to-day? Find a doctor who is willing to listen to you and work WITH you to get the best possible outcome.

And as you have already discovered, this forum is a fantastic resource - since there are so few people who actually have this disease, it is nice to be able to talk to others who have been there, done that.....

Oh, one more thing - you mentioned that you have Hashimoto's. Have you ever been tested for Celiac Disease?

Many people with Hashimoto's have an undiagnosed case of CD (or they may be gluten-sensitive). A gluten-free diet is the simple "cure" for CD/GI, and many people find that a lot of other problems that they had been experiencing are either greatly alleviated or disappear completely.

While a GF diet will NOT cure MG, it can sometimes help with other health issues that a person may be having. Even if you don't test positive for CD, you may want to do a one-month trial of a GF diet, just to see if it makes you feel better (you do, however, have to eliminate ALL gluten for that month - there is no such thing as "gluten lite").

You might also want to find the list of medications which are contra-indicated in people with MG - even if you haven't yet been diagnosed with it, if you DO have it, those medications can cause real issues (some of them life-threatening). Better to play it safe.... :)

Mestinon will only help you if you have MG and otherwise do nothing other than possibly make you sick. Too much can mimic the symptoms of MG. For me it gives me gastro problems if I take too much at once but it definitely helps with my MG. It was given to Gulf War troops and below is a quote from wikipedia:

Pyridostigmine bromide has been FDA approved for military use during combat situations as an agent to be given prior to exposure to the nerve agent Soman in order to increase survival.

Apparently some of the troops did not have good reactions to taking this med as it is a possible cause or issue with Gulf War Syndrome. Interesting stuff on wiki...

Update
 

Thank god I found this group otherwise I would be a useless body laying in bed feeling like crap and thinking I was crazy!!!!

So yesterday i had emg, he only did test on right hand and stuck needle in right arm no testing on legs dspite my repeated statements that most serious problems are in my legs. No surprise EMG was negative. Also dr wouldn't do sfemg despite my request. I too was told by doctor that negative was good news and I also responded maybe you think good new but I don't necessarily since I still don't know what is wrong with me.

It was ONLY because of what I had learned from this group (thank you thank you thank you) that I knew about mestonin and I insisted they start me on it because discharging me and telling me to lay around and do nothing was not acceptable. So I came home last night with rx for 60 mg once per day, they wouldn't give me pill made me come home get script filled.

I took one yesterday and I think it made me feel better. I got up this morning feeling really crappy (probably because after telling me I could go home yesterday they then made me wait around about 5 hours which was only 5 hours because I got very annoyed and really insisted they sign discharge and let me go) waited about 2 hours to see if I started feeling better with no pill but
didn't really so i took pill about 1 hour ago and magic, I do feel better.

I will make followup appointment with neuro dr at um - not the guy I dislike but the dr who is in charge of neuromuscular group at um.

Sounds like you have your answer....now to get a doctor to concur.

One pill of mestinon a day will not be adequate. How many tablets did you receive?

When you make your appt, tell the receptionist that you are "just out of the hospital" due to severe weakness/breathing difficulty. That may or may not help.

FWIW, it took me 4 doctors to find "the one." It takes persistence, but once you're "in" you're in!

Hang in there...and be careful!

Mestinon
 

Ooh...1 60 mg Mestinon a day? Time to find another doctor in my humble opinion. Mestinon for me typically wears off at 4 hours; I take 30 mg about 4 times a day. And if you take too much, it can make your symptoms worse. Might I suggest taking 30 mg at least twice a day instead of 60 all at once?

I take 60 mg four times a day.

I take 30 mg anywhere from 4 - 6 times a day depending on how I feel (and activity level and the temperature, etc.)

It should never be used like no-dose (as an example). By that I mean don't just keep taking it because you want to keep going. Too much can put you in as bad a place as none. Find a good neuro you can work with and adjust the dosage with time and experience.

Be aware that if you are taking Mestinon, it will invalidate the results of any sfEMG or EMG. You need to be mestinon free for anywhere from 48 hours to one week before testing. (The length of time is varies depending upon who you talk to - but I think all neuros accept 48 hours as the minimum.) Check this out with your neuro well ahead of appointment.

The first thing that a doctor wants to do when seeing if Mestinon will "work" for a patient is to determine what DOSAGE they can tolerate.

My neuro gave me an Rx with the instructions to try 30 mg once a day for 3 days. If I could tolerate that, then move on to 60 mg once a day for 3 days, then 90 mg for 3 days, then 120 mg for 3 days.

If at any point during this trial a dosage made me feel bad, I was to go back to the dosage that didn't make me sick. Mestinon's effects wear off within 4-6 hours, so it's usually not a "crisis" situation if you have one "trial" dose that is too much.

For me, 90 mg was the "sweet spot" - 120 mg put me on the couch, sick as a dog.

Once the dosage has been established, then the INTERVAL can be determined - that is, how often you need to take it. And with Mestinon, while too high of a dosage is a bad thing, most of us find that some days we need to take it more OFTEN then our usual interval.

Each patient is different.

And my doctor knew for sure that I "had" it when I figured out what dosage worked and started to figure out the right interval on my own (because I was functional for the first time in a long time).

Apparently I was not the first of her MG patients to do that.....:rolleyes:

If you can tolerate 60 mg without seeing a discernible difference, you DO have MG - you might need a higher dosage, but talk with your doctor to see where to go from here.

People who do not have MG can't tolerate even the tiniest amount of Mestinon.

Oh, and I take 90 mg 4 times a day and a 120mg timed-release Mestinon at bedtime.

YMMV.....:D

Without a doubt, it has helped, not claiming it made me feel 100% but it is nice to be functional, even if only for a few hours. I have to say this is one of the most bizarre illnesses and that is coming from someone who once was paralyzed from neck down for 4 months from a rare illness (Guillain barre)

Again, thanks for sharing your insight and advice

what does YMMV mean?

what does YMMV mean?

Your mileage may vary..... :D