Seeing 3 neuros - not sure how to deal with this

[Maks322]

Hi
Has anyone run into this?  I have symptoms of MS and symptoms not like MS.  My neuro has been great, sending me to specialists to try to help me.  The belief is that is we can explain the non-MS symptoms then we can say what's left is MS.  So I went to a specialist for Myastenia Gravis ( this would explain my other symptons), this specialist believes that though the blood tests came back negative I do have Myastenia based off a single fiber test I failed.  I faxed the results to my neuro with a note saying I'm supposed to start treatment Monday (IV steroids).  I never heard back,

Meanwhile I went to a MS specialist (at a teaching hospital). She had nothing nothing from my neuro, very unusual, he's typically very detailed and dependable. She believes that I probably do have MS but needs to see my labs and MRIs.  She did blood tests ( I asssume not knowing exactly what was done).  But wants to repeat the single fiber with people she knows and trusts.

Still no word from my neuro so I call him and he calls me back.  I tell him everything.  He never saw the fax (office disorganized, I believe) and believed the stuff was sent to MS

Then the conversation got weird.  You have to decide who's treating you, I can treat you for both.  I'm being left out of the loop.  The Myastenia expert said something similar - turf war, I'm diagnosing, am I treating?  Seriously you go from no one wanting to commit to everyone wanting to treat you? The MS specialist wanting all the tests to be repeated there and the issues to be diagnosed there.

What do I do?  My neuro has been great, but I not sure what to do. Myastenia expert close but MS about 1hour 20 mins.  He sent me to these neuro's ( and 1 more). But no one talked after that, I found myself faxing him copies of the reports from them.

Maureen

[Sailorsong]

From what you said in your last post it sounds very much like MS, but I am no doctor.

MS almost always presents on only one side of the body to start. The "Phantom Tooth Pain" sound like TN a fairly common problem for people with MS. And the "squeezing feeling in my midsection" could be what is called the MS hug. MS can also cause swallowing problems.

Dennis

[LilMinnie]

I should probably clarify even more. Before my vision went bad, I had already been seeing a neurologist because my right  arm and leg felt half asleep, my rightlleg would give out on me (fell down the stairs a couple of times, once spraining my ankle) pinpricking and burning sensations in my right leg, and then my pinkie and ring finger going completely numb on my rright hand.

I also have had a horrible squeezing feeling in my midsection. Also what I call " Phantom Tooth Pain " because all of my teeth in the right side of my mouth hurt at the same time, andthe iinside of my mouth and rightsside of my nose felt it was recovering from an injection of Novocane.

I used to be a very active person and pretty sharp... now I feel myself slipping away.

I try to concentrate on the good things in life, like my children, grandson, and husband, who has been doing most of the chores because I'm so wiped out after work. Sad that work gets the "best" of me and I feel worthless for my family.

Hopefully we'll figure out what is going on with me soon so at least we'll know.

Hugs and blessings,
Minnie

[LilMinnie]

Ugh, my communication skills are getting wors !

I had gone to an Opthalmologist because my vision suddenly wentddouble. After being there for almost four hours, she determined I have refractive diplopia and convergence insufficiency X (T).

Sooo, she sent a report to my neurologist recommending I be worked up for both Multiple Sclerosis and Myasthenia Gravis. My neurologist doesn't seem to be leaning towards the Myasthenia Gravis right now based on the testing I've had.

I don't have the droopy eye but I do have difficulty swallowing at times. I gag easil , which never used to be an issue, and I also get sick to my stomachffor no apparent reason a couple times a week.

Knowing my luck (trying to keep a sense of humor ;) ) it wouldn'tssurprise me if I had more than one thing like that going on.

I hope you get some answers soon. I have only been going through the diagnostic process for a few months and I am already getting exasperated!

All the best, Minnie :)

[Maks322]

Really? they think you have the same 2 auto immunes?  I assume MG is myastenia gravis.   The MS specialist said she has never seen these 2 combined.  Usually it's MS and Lupus or MS and thyroid.
Have you decided if you have these 2 things who will treat you
Do you have a droopy eye and a hard time swallowing?
Maureen

[Maks322]

Kyle,
I never looked at it like that.  But yes that's true.  He has always suspected MS and something else.  He would have treated me for MS if I pushed it,  I never heard him speak like he did the other day.   Usually he's so sweet, asking how you feeling, how's it going.  But I always wanted him to say yes this is what it is and this is what we need to do.
Its amazing to me that with all the patients these people have that they would care who treats.  I guess when he was sending me to these specialists, I never thought about who would be the one to treat.
The thing is he's so accessible, he truly cares, I can get him to call me back.  But if I have 2 auto immunes - maybe I need something else
ugh - not sure wht to do
Maureen

[kwarendorf]

Hi Maks - Welcome to the wonderful world of neurological diagnostics :-)

Doctors can be a pain in the a**! It sounds like your first neuro wants to treat you but won't diagnose you. That makes no sense. He sends you to specqialists for diagnosis but wants to treat you?

Kyle

[LilMinnie]

Hi!

I'm not diagnosed with anything, either, and I am bein evaluated for  MS and MG too.   I can certainly identify with you regarding the frustration of being in the middle.

One says they faxed the form , the other says they didn't get it. Wrong test results, repeat tests. I like my current neurologist, but I don't think his office is very organized.

I guess I don't have anything meaningful to offer other than understanding. It is a difficult decision to make. Not only that, but it isn't even you fault for being in the situation in the first place because you were doing what was requested of you!

Is there one that quickly comes to mind if someone were to ask you which one you believe will give you the best care?

Best of luck,

Minnie :)