Frustration overload

[tenessa24]

Ok, so I met with a new neurologist because I re-located from Missouri to Michigan. I was diagnosed with RRMS in March 2015. Now this new neuro “isn’t sure” she “can’t confirm or disagree” with my diagnosis. Huh?! Anyways, I’m being referred to University of Michigan for further investigation. Anybody have any advice? I’m so frustrated!

[Morllyn]

tenessa24 Wow! So sorry!

[Hidden]

You should see a neurologist who is an MS specialist.

[tenessa24 in reply to Hidden]

I will be seeing the MS Specialist at University of Michigan. Probably should’ve been referred a long time ago. 😕

[SueAB]

tenessa24, I hear you! I was diagnosed in 1988 and have been seen by several neurologists including the director of an MS clinic. Low and behold, my last two neurologists tell me they probably would not have made the MS diagnosis!

[Juleigh21]

The neurologist that I'm currently seeing wasn't convinced I had MS. Went through the entire battery test for the second time including another lumbar puncture. Guess what? He diagnosed me with .... MS!

[ynggal in reply to Juleigh21]

It's disgusting that the dr put you through all that, particularly the lumbar puncture, when you had already had one. I'm sorry you had to go through that just to be told what you already knew. I'm sure the stress wasn't good for you either. 😢

[Juleigh21 in reply to ynggal]

It was very stressful! I really resisted the 2nd lumbar puncture, but since he was the ordering doctor for the Tysabri, I was at his mercy.

[ynggal in reply to Juleigh21]

I can't imagine. That lumbar puncture is no joke. I don't know about you, but when I had mine done I had to go back to the hospital a week later for a blood patch.

I hope things are looking better for you now.

[greaterexp]

tenessa24 , I’m sure sorry you’re on that diagnosis roller coaster. You can read similar stories here over and over.

We all long for the day when a single, definitive test is discovered, but I’d settle for a cure first!

Hang in there, and please let us know what you find out with the MS clinic.

[erash]

tenessa24

I can see where that could be very disconcertingly! When were u first "diagnosed"? Are you on DMTs?

My MS specialist neuro had no doubts that it was MS right off the bat. I wasn't convinced. So I went to another MS neuro who tried to find bizarre diseases. (He also wanted me in one of his many research studies)

I ran back to my original neuro 😬

[tenessa24]

I was diagnosed in March of 2015. I took Tecfidera for almost a year, but was taken off after I experienced extreme weight loss. I hope and pray that I DON’T have MS! However, they’ve got to figure me out because whatever is happening to my brain and the rest of my nervous system is debilitating and I darn sure don’t want it to progress any farther if it can be treated. It definitely squashes my confidence and faith in physicians.

[WAshingtongirl]

I'm really sorry you're going through this, tenessa24 . I went through something similar. Diagnosed after 9yrs, then undiagnosed 2 yrs later. Then diagnosed (again) at an MS Clinic 10yrs later when my symptoms got bad again. Then this past year, my neuro (doc at MS Clinic who said I definitely have MS and have had all this time), questioned my diagnosis again. Immense testing, consults with other docs, etc. proved I have MS and Lupus. So I not only got to keep the MS diagnosis, but got a couple other autoimmune diagnoses too. I can empathize with what you are going through. I pray this new neuro is thorough and can tell you, without hesitation, what is going on with you. I know you just want an answer, and probably don't care what that answer is...just a definitive answer. That's how I was. A few others here have gone through something similar. We're here for you. Let us know how your consult goes. 💕

[tenessa24 in reply to WAshingtongirl]

That’s exactly how I feel! This forum has truly been a blessing. I appreciate all the positive support and shared experiences. Praying I’m able to get into the MS Specialist sooner rather than later. Sounds like you’ve been on a roller coaster ride!