I have been lurking on here for a bit, reading other posts, trying to see if anything sounds like what I have been experiencing but am mostly getting more confused

My most concerning symptoms getting progressively worse from about 2.5 years ago:
* extreme weakness, can't sit, stand for long or climb stairs
* trouble breathing, shallow, pain/pressure upper center chest at throat
* vision problems, focus, drooping eyelid, loss of peripheral vision
* numbness in feet daily, fell twice

other symptoms
* store lights/ bright outdoors cause eye problems, feel off balance
* heavy like a rag doll when tired
* feels like throat is closing up, causes choking, wakes me at night
* slight tremor

I have had blood tests about 10 times with normal results; had both scopes done, found stomach inflammation; cardiologist testing, tachycardia no cause; adrenal testing, mixed results.

About a year in, thinking it was adrenals, I tried replacement steroids which helped somewhat, able to do light housework, started driving a bit. After 2nd adrenal test (I failed) the endo had my dr. wean me off them as she said the low function was caused from the steroids. Off them I went back to how weak I was before and continued to worsen.

About 4 months ago at an appt. I mentioned my vision problems again to my dr. and happened to have the drooping eyelid so he suggested testing for MG (I had never heard of it). I had the Acetylcholine Receptor Antibody blood test and an EMG which showed nothing so my doctor said no further testing is needed. I have since read that is not correct.

At that appt. he said I would just have to accept that it is anxiety ( I have a history of it). I tried to explain to him that my physical symptoms could not be explained by anxiety but he does not take me serious. I explained how bad my breathing was and he did not even listen to my lungs just ordered a lung test. I haven't been back.

I have an appt. next week with a different dr. who is his holiday replacement to get the lung test results and I am considering asking if she will refer me to a MG specialist who is an 8 hour drive from where I live.

I am feeling very desperate. I am so weak sometimes that I barely make it to my bed, it comes on suddenly. I really feel like a rag doll if I sit for as little as one hour. When I get my weakest my breathing is so shallow it is scary. I have stopped driving completely because of the weakness and my eyes randomly mess up. When this started my weakness came on later in the day but now it could be as quick as one hour after waking.

I am confused if this could be MG because, although my main symptoms seem to fit, some of the others don't. I haven't seen numbness or tremor listed as part of it and I also have a fast heart rate, low blood pressure and others that make me wonder.

My husband would drive me if I can get referred but it would still be a very difficult trip for me to make. I'm sorry for the long post and thank you if you took the time to read it all, I do appreciate it and any comments you might have

I took a pill to help me sleep so I may not respond tonight but I will be sure to check when I wake up.

~jules~

Hi Jules

This is just abominable.
My symptoms were at their worst at a very calm period in my life and were at their mildest ever (almost silent) during the most stressful 3 months I ever had at the beginning of this year.

Please do not end up getting stuck with a doctor like this like I did for 2 years. It was only through sheer LUCK that I didnīt end up getting into big trouble last year.

My gut feeling says take the trip. I you donīt you may or may not get that chance to find someone that understands a little more than if a patient has breathing problems get with it and take some of those darned instruments out of your drawer and use them!!!

You have probably already thought through ideas: Plane??? (wheelchairs to help at airport) Drive halfway and have a layover somewhere.

Iīm sure youīll get lots of answers from the others.

Hang in there for now

Anacrusis

Hi Jules,

First, I am so sorry that you have to go through this.

You are not the first (and probably not the last) patient who has been told she could have MG (based on her clinical symptoms) and then told that it was "ruled out" based on normal test results.

Making an accurate diagnosis on the internet is impossible.
But, at least from the way you describe your symptoms, it sounds like it could be MG. Normal test results make this diagnosis less likely but do not rule it out.

Roughly 20% of MG patients will not have detectable AchR abs. (This is the test done routinely to check for MG) out of those probably about1/4- 1/2 will have a normal EMG (even if the more sensitive SFEMG is done).
(it is hard to know the exact numbers because very few studies have been done in this group of patients). So, about 5-10% of MG patients will have completely normal tests.

It is much harder to make the diagnosis of MG without "objective" tests, so many neurologists just don't bother. Seeing an MG expert may be beneficial. First, the tests may have not been comprehensive enough or not done properly. Second, you may reach someone who is open-minded enough and confident enough in his clinical skills to diagnose your illness and treat you accordingly, even without supportive tests.

A proper respiratory test can be helpful, so I think you should wait for those results as well.

I hope you do find someone who could diagnose and more importantly treat your illness soon.

Anxiety cannot make your eyelid droop.

Anxiety may cause breathing problems, feelings that resemble muscle weakness, tachycardia, possibly even tingly feelings. But it just can't make your eyelid droop, especially without you having any awareness of it without looking in the mirror. If I am wrong, somebody please explain how.

I was told that I just had psychological problems with my symptoms. I went to an ophthalmologist, and he immediately thought that MG was likely. I ended up at a second neurologist. He says that I do have MG even though the tests are all negative or normal. I still have some feelings of doubt, but I will have to say, the medication (mestinon) has really been helping.

You may or may not have MG, but I think that you need to get checked out by a good neurologist for sure.

Thank you all for responding, I appreciate it!

I woke up feeling very off balance this morning and had to go back to bed for a bit; I am trying again. This is one of the things that make me doubt MG, is me waking up and my vision and breathing are poor making me feel off balance before even getting started.

I am at least going to ask the dr. next week for a referral and take it from there. Even if it isn't MG I will at least have an answer from someone who specializes in it and maybe he will have other ideas.

Anacrusis, I explained to my dr. that my life is very stress free right now and I am actually happy, the only problem I have is that I am too sick to live my life but he is not convinced.

Alice, I do doubt the results of the EMG as the machine shut down twice and he laughed and said he just had to unplug it and plug it back in to reboot. I know that's not good for a computer so I am doubting it is good for an EMG machine. I am hopeful that since this other dr. specializes in MG he may be able to tell me one way or the other with more certainty. If it isn't MG then I can try another route though I do feel I am running out of options. Living in a small city with little specialists is hard.

Celeste, when my dr. blames everything on anxiety I do ask him specifically if it can cause my eyes to droop, feet to go numb etc. and he responded that it could. It's strange I was sitting calmly watching a movie with my son on Sunday, feeling happy, and about one hour into the movie I began feeling floppy but tried to fight it, withing 5 minutes he had to help me to bed. I rested for less than an hour and was able to get up again.

I am concerned that we will make the long trip and that I will get a quick exam and be sent off again with no answers. After trying so many doctors already I am starting to lose faith in them. For myself if there is something I don't know I dig and dig until I solve the problem but it seems with the doctors I have seen, if the answer doesn't jump out at them they shove me out the door and that's it.

I will try and see what happens, it may be months before I can even get an appt. but it will be something to give me hope. I think the worse thing is when I am too weak to get out of bed and I'm thinking to myself that this will never get solved because no one is even trying to solve it.

Thanks again for responding
~jules~

Jules,
I would also encourage you to seek out a thorough evaluation, even if it does mean traveling a distance. You may or may not have MG, though whatever you have is greatly impacting the quality of your daily life.

My diagnosis of MG came 7 years after I was evaluated by a neuroophthalmologist for double vision. At the time, I was told that he was 99% sure I had MG. However, my antibody test and EMG was negative so all investigation in that direction was dropped and I was told it was a congenital nerve palsy. I continued to develop other generalized MG symptoms that were also explained away (arm weakness due to statins, documented leg weakness on exam "not physiologic.")

Long story....but I finally was evaluated by another facility (a plane flight away). They gave me a tentative diagnosis of MG when my tensilon test was positive. Treatment has helped, though not to the extent I had hoped.

I am now followed by a wonderful neurologist who assures me that a negative antibody test and a negative EMG does not necessarily equal NO MG. Those 7 years of "limbo" and my treatment from specialists, created a lot of self-doubt, particularly b/c I didn't have anyone advocating for me and sometimes I was just too tired to do it myself.

Don't doubt yourself!!... and continue to seek out answers.

Cate

Sorry that I haven't responded again, I had my appointment with my doctors replacement and then had a very bad week after.

She was a young woman, just finished medical school and was very nice, she actually listened to what I had to say without interrupting me. I had typed up my most concerning symptoms along with the name and contact of the MG specialist and asked for a referral and she agreed.

I also mentioned to her that several doctors, including my family doctor, have mentioned MS but no one would send me for testing. She agreed to start with an MRI of my brain and spine to see if anything shows.

I think it helped that she had never met me before and I was having a very bad day. My husband had to help me into the examining room, speak for me when my voice became too weak and my right eye was bad. My doctor has seen me in that condition many times but really believes his anxiety theory.

Unrelated, but I also got a copy of an ultrasound report I had done for abdomen pain in early May that recommended a CT scan for a small cyst on my liver. The report said a small cyst plus a 5 cm mass they could not identify which was the actual reason they recommended a CT scan. It may end up being nothing and not related but it is one more thing to worry about and make me question my doctor. So sad that after getting referrals from other doctors it pops in my head that my family doctor is going to be so mad, almost like I bypassed him, which I guess I did

The referrals were sent two weeks ago today and it may take a while to hear back but at least it is something that might get me answers. I got a letter from the hospital that the CT scan of my liver/abdomen is on Oct. 19th, not as fast as I would like but I am learning patience, or attempting to.

I'm glad that I found this group, everyone is very helpful to each other.
~jules~

I went for an appt. with the nurse practitioner at my doctors office and she told me the MG specialist responded to their office saying he felt that it was not MG or urgent so would not be able to see me for one year to 18 months so that route is out. I doubt I will make it that long.

Needless to say I am very disappointed and kind of shocked as I have read some of the things he has written and breathing issues are considered urgent.

I am having a MRI on Saturday of my brain and spine since MS was also mentioned. I feel so bad but I told my husband lets hope it shows MS because I have no other avenues otherwise. There is not even a neuro where I live and I don't know how to go about finding one who will see me soon and listen and my doctor has told me he is out of ideas.

I think the stress is making things so much worse right now. I am trying to hold things together around my family because they get so scared but I'm getting pretty scared myself. Sad but I find I am doing things like getting rid of personal items and not making purchases because it honestly goes thru my mind that I don't want my husband to have to take care of things if something happens.

Jules,

You have breathing problems, so you need to see a good respiratory physician.

Neurologists don't know much about breathing problems any how.

What saved my life was that I always had good respiratory physicians I could consult.

I would definitely not go to a neurologist who decides without seeing you that it is unlikely for you to have MG.

I would not go to a doctor that decides ANYTHING without even seeing you. What is he thinking?????