Now what- still undiagnosed

[wendya432]

Still having trouble getting this all figured out.  Short back story since I haven't been here for a while:
Lots of MS symptoms that have been creeping up on me over the past year or 2.  Dr thought I might have lupus since I was having trouble with the sun, turns out it's trouble with the heat.  Rheumy said there is nothing in their scope wrong with me except some arthritis.  But says I need to go to a neuro.  New primary care dr says everything sounds neuro to her as well and sets me up with someone that I can get into quickly.  

I have brain mri w/ and w/out contrast (but not ms protocol) on 3T machine.  Go to neuro.  He gives me a quick exam and does a history, etc.  Says that he'd guess MS and if it's not MS he doesn't even have any other ideas.  Looks at my MRI quickly, says no lesions so it's definitely NOT ms.  Sends me to get c-spine and t-spine MRI (without contrast on 3t machine).  I go back to him and he says nothing is wrong with me, that my trigeminal neuralgia is just headaches and nothing he can do.  But come back if I get worse.  I call back a month later, because my right leg was getting worse and I was having double vision.  Secretary says they can see me in 3 months maybe longer.  I say forget it, I'll go somewhere else.  How he could go from saying I have MS, to saying nothing is wrong with me, and then not getting me in when I'm having new symptoms is beyond me.  (I have hyper reflexes in my legs, ankle clonus, spasticity, etc, etc, that he saw in his exam!)

So I go back to Dr, she says she can't do much since she isn't a neuro but will get me in to the nearest teaching hospital.  So, I call back after a month and they haven't made my appt.  After I call a few times, they finally get my appt scheduled with U of Michigan.  My appointment isn't until July!!   I know it is hard getting into places, but wow, that is a long wait, especially since she knows I"m just going down hill quickly.

So I'm having new symptoms.  Nausea, dizziness, eye pain, double vision is worse, etc.  But I know if I go to my dr she was just say there is nothing she can do.  I went to the ophalmologist for my eye issues and he said my optic nerve looked healthy, and my eyes are healthy.  But I do have a congenital muscle issue with my left eye and he can't tell if what is going on is just related to that, or something else, but to bring it all up to the neuro when I get in there.  He was really helpful actually, and said he didn't think it was any eye disease, but he couldn't be 100% sure and that my eyes just seem to be wired differently than most people.  He changed my glasses script and said it should help.  But I'm still having double vision, and it's slightly worse since I've seen him.

All my blood work has always come back fine.  My vit D is a hair low, but I am taking supplements.  Winter in Michigan makes it a bit hard to get enough sunlight!  

So now I am kind of stuck.  Here I am feeling horrible.  My eyes are driving me nutty.  My leg is driving me nutty.  I'm getting more things almost weekly.  And nothing is letting up.  It just seems crazy to me that eveyrone is content to let me wait, when I'm the one getting sicker, and they just go on with their lives.  I don't know how to find the middle between being obnoxious and being the squeaky wheel that gets the oil.  Know what I mean?

Any advice on what to do next???

[Sierra28]

PS I'm still waiting on 3T MRIs. I think those go a long way in diagnosing MS vs something else. My current neuro is considering a LP, but is undecided. My last neuro never brought it up.

[Sierra28]

I'm in the same boat.

Two doctors have told me they *don't think* it's MS...but then nearly all the mimics have also been ruled out, as best as they can be, as have the rheumatological causes.

Non-neurologists say its neurological. Neurologists say they don't know.

So my goal is to find that doctor who will work with me until we DO know.

But the wait and the expense and the feeling awful...yeah, those are super tough.

Hang in there is the best advice I can give.

[vamanos]

I have some of those same symptoms, and it is super frustrating, and definitely life impacting.
The visual issues and mobility are hard to get used to.

I hope you find a doc who is open to exploring all manner of illness, etc.
Good luck!

[SarahL2491]

I don't see any signs of MS on what the docs are saying.  There are over 20 mimic diseases and of course they all have to be eliminated.

You have not done an LP, not sure if your docs will go along with that.  It's usually not cast in stone but in your case, perhaps?   Did your eye doctors check for ON?

Finding an MS dx is not always easy or fast but your s/s could be many other things, you just have to weed them out one at a time, if you have good doctors, trust in them!

We are just MS patients helping each other, no doctors here, but wish you the best!