Hi guys,

I have a plethora of symptoms and have had for some years now that I can't figure out, .. and just don't get better.

Briefly I have:

Diplopia

Ghosted vision (monocular diplopia) *IE: a fainter image of the thing I'm looking at in each eye in front of what I'm looking at.

Dispersed muscle weakness--

My shoulders, back, neck, hands (ie: Trying to squeeze a water hose or sprayer.. after a few seconds it feels like my muscles give out and I have to stop.) -- Typing right now on a laptop is difficult to just hold my hand up in the air (hovering over the keyboard as I lay on my stomach) --

The list could go on with the muscles.... but weird weaknesses that can't be explained. Although I could lift some heavier weight a few times .. doesn't make sense.

Holding my mouth open at the dentist causes it to shake after a short period of time..

Just sitting up straight now is tough -- I have some sort of pain in my neck/back from it.. and I can be sitting or driving and have to relax my neck to one side or the other -- leaning my head to one shoulder, etc.

My bowels -- I don't feel like I go enough nor does 'enough' come out when I do. *TMI?*

Any activity that used to be easy -- working on a car for a little while, etc.. I can't sustain..

I am 33 now, just turned it. This has been persisting for 6 years or so now. Slowly getting worse I'm afraid.

I noticed it first with my vision.. which is a 24/7 thing.

Bottom line, is I think MG may be the issue -- and I've been to a few GP's in the past.. an ophthalmologist , and so on.. but no talk of MG.. and I'm a little doctor shy because no real concrete problem has been found.

So, what kind of doctor should I see?

Just any neurologist?

Should I go in and say I want to be tested for MG?

Another thing -- My mind, it is constantly foggy - and I can't think straight, nor see properly all the time. Can this be from MG?

Thanks,

Hey, Neofate. I reread your previous post to get some more info. So it looks like you have a vitamin D deficiency and low thyroid, which may mean Graves. I hope you have been supplementing with Vitamin D, Magnesium and Vit. D. Not too much Mag though since that can make MG worse, if you have it.

Do you live near a university or research center? Can anyone refer you on to a neurologist? A neuromuscular specialist is better but any neuro can run an AChR antibody panel! There's also the MuSK antibody test but that can be expensive. You mentioned previously that money is an issue. I'm sorry about that. Many of us are in a similar situation.

How's your diet? How high is your cholesterol? Is it slightly high or really high? Often simply a change in diet can lower a slightly high level. Were you given a statin drug to take? Those can make MG worse.

http://www.mayoclinic.com/health/red...tient-redyeast

I have found that many neurologists don't like patients telling them what they "think" is wrong with their health. Yes, many neuros I've seen are rather arrogant. I think it's enough to say that you feel weak and give examples of that.

Are you comfortable with your primary doctor? Do you have one? They could run the AChR Antibody panel and send it to somewhere like Mayo. Then at least you'd have some info. A primary doctor could also do a neuro exam and tell you their findings. They rate muscles in an exam. For example, 2/5 muscle strength is fairly bad while 5/5 is best.

Instead of using "dispersed" you may want to say "generalized" muscle weakness. That's how neuros refer to it. Though just say you're weak and where. Heaven forbid we sound too intelligent!

Without acetylcholine, peristalsis - how food goes through the GI tract - does not happen well. You need muscles to move food through the body.

You could also see a neuro-ophthalmologist. They can assess your vision and tell you if you have "fatigable" weakness of your eye muscles causing your vision issues.

Are you short of breath? You could ask your primary doctor about getting breathing tests done. A pulmonologist is really the best one for that.

It really sounds like you need a few doctors to help you. If you are that bad off, you should probably begin with a neurologist. I'm surprised you haven't seen one yet! You can't mess with MG, if that's what you have. If you get so weak that you can't move well at all, breathe well or can't swallow, you need to be in an ER; diagnosed or not.

Have they checked your vitamin B12 level? Your primary doctor can do that too. Often, a regular tablet won't do. Some people need sublingual methylcobalamin, a B12 which goes right to work in the bloodstream. I take it daily. Since money is an issue, I get mine at www.iherb.com where they have reduced prices.

Anything else we can help with? I think your symptoms sound like MG but it's hard to tell over the Internet. MG is all about fatigable weakness and it sounds like you do indeed get worse the more you do. It's the hallmark of MG.

Just bite the bullet and get a neuro. You deserve to know what's been making you feel so awful for six years!

Annie

I agree with Annie...find a neuro. Here are some ideas that might help you get a good one on the first try.

1) Contact your local Muscular Dystrophy chapter and see if they know a neuro in your general area that has dx'd (or specializes in) MG

2) Ask folks in this forum about neuros they may know of in your general area. (You can PM someone if they are in your area and you don't feel comfortable putting your general location on the board.)

3) Research centers and teaching hospitals - like Annie said - can be a good option. Besides the big ones, like Mayo...I know there are others in most major cities. Look them up on the web and see what they offer re: mg and other neuro dx's

4) Get emphatic with your GP. Mine didn't pay too much attention to my weakness complaint at first. But after a year, I pushed pretty hard and said we need to understand this because 'whatever it is' is getting worse and I'm sick of it messing with my life! (Funny aside,,,for the first time ever, I brought my husband with me for that apt. and he backed me up - even gave examples from his perspective. Viola! my GP was quick to respond with ideas and ordered a bunch of tests. Now it still took a year, a rhrumy, two neuros. and an oncolgist to zero in on a dx..but at least I finally got one!)

Don't give up. You know your body and you know something is not quite right. Even though it's hard to navigate the med system sometimes, pursue and persevere to get the answers so you can improve your quality of life.

I appreciate your interest.

I did/do have a vitamin D deficiency,.. and I cannot take Vitamin D supplements as they utterly constipate me no matter the brand. I go on some stints of trying to get some natural sunlight for vitamin D production but honestly I can say I am not very consistent.

I have supplemented with Magnesium, but only briefly.

I live in Birmingham, AL.

There are a few universities around. The most prominent would be UAB (University of Alabama at Birmingham) - a medical school at heart.

However, IIRC, they do not take BlueCross insurance.

No one I know has any clue 'who' to see. At best I will get told that I need to see a doctor to 'find out what is wrong with me'.

I think, gee... If only I had thought of that.

To be honest I am scared of doctors throwing my symptoms off as psychological, and dismissive. I suppose from experience of no results with the doctors I have seen have put me off.


My diet is not so good. Too much fast food,.. and I eat alot of carbs and meat.

My cholesterol likely reflects this. It is high, but not off the charts. No, I was not given a statin.
http://www.mayoclinic.com/health/red...tient-redyeast

I am not comfortable with any doctor at the moment, because I don't feel like I have a doctor who really wants to put forth the effort to solve a 'difficult' and I suppose, non traditional 'case'.. if you will.


I've thought of this. Would MG cause shaky vision.. ? And odd constant vision issues ?

I'm constantly second guessing myself...

I'd like not to have a negative and wasteful experience, so I guess I need a referral to a neuro who cares to getting to the bottom of someones symptoms.

All in all I just want to feel half way normal again.. not too much to ask and I feel as though I'm suffering every day, and there is no end in sight. What makes things doubly worse is there are no explanations as to why. So I question my own 'sanity' as not knowing is an issue in and of itself.

Thanks for your help!

My personal opinion is that any neurologist who see's you, will consider MG as a diagnostic possibility.

It may become a problem if your tests will be normal, but this is not something you can know beforehand.

Having your symptoms attributed to psychological issues, is only a problem if it deprives you from proper care or endangers your life, but as it is you are not receiving any care.

In fact, I was very glad when in the early days of my illness, the neurologist I was referred to, thought I was just overworked and need some rest.
I was even quite happy when after my first hospitalization (with a myasthenic crisis) he told me that he is sure I will do better with hypnosis therapy. (at that time I was receiving IVIG which only led to mild and transient improvement and it gave me enormous hope to think that hypnosis therapy is all that is required to make me well again).

The worst case scenario is that the situation will stay the same, the best case scenario is that you will have diagnostic tests, receive proper treatment and do better.

Right now, you are the one depriving yourself of proper care.

If I were in your place, I would go see a neurologist, describe what I am experiencing as accurately as possible, and see what he/she thinks.
It may be myasthenia or some other possibly treatable illness.

It is true that there are some arrogant and obnoxious physicians, but it is their problem not yours. And there are many who are truly caring and compassionate and will try their best to help.

What ever you do, don't give up on yourself,

Alice

I also fall into the "complicated patient" that my PCP just refers off to the other specialist. If you have a low thyroid (the TSH test is high) you would have Hashimotos (I have this as well) which can cause you to be tired and weak. Not to discourage you but it just took my doctors 30 years to find I have MG in addition to MS which was diagnosed 10 years ago.

Don't give up just get trying to find a doctor who will take your symptoms and run the proper tests.

Gabriella