OT - Mis-Diagnosed with MS

[anon07072023]

They think that I've been mis-diagnosed with MS.  

I went to see a doctor who specializes in rheumatology / neurology yesterday morning and spent 2 hrs in his office with his NP.  I was lucky enough to get into see him very quickly - within a week.  They had initially told me it was going to be a 3-4 month wait.  His exact words to me were, "I think you were mis-diagnosed with MS.  I believe you have a serious illness.  None of the ones I'm thinking of you want.  But there are treatments out there that are getting much better with research."  

My symptoms continue to progress (slowly) and I also have those Lupus-like symptoms I've talked about previously. (I brought in mulitple pics I had taken of swollen ankle, bruising around ankles/feet, arms/elbows, rashes here in there, Lupus like red butterfly-ish rash, Raynaud's syndrome coloring on my toes, & photosensitivity on my arms). I've lost almost 20 lbs. Plus, I still have the weakness in my hips and upper legs with spasticity that doesn't allow me to go to the bathroom on my own about half of the time or more & a host of other symptoms going on.  

I had a CT scan of my abdomen & pelvic area on Monday.  The report showed (for the 2nd time in a row) multiple reactive lymph nodes scattered thru-out the mesentery along with stranding.  And some other things on my liver.  

Yesterday, they took about 8 large vials of blood and here is what he's thinking seriously about and trying to test me for:
Systemic Lupus Erythematosus
Cancer
Polymyositis
Vasculitis
Multiple Myeloma
Myelitis
Antiphospholipid Syndrome  

He wants to see me in a week and he hopes all the blood work will be back by then.  He seems to be very concerned, which I guess is a good thing.  I've tried to tell my neuro so many times my symptoms and how I don't believe I fit into the RRMS category.  Of course, she never listened.....  But at least someone is finally listening.

Thanks,
Kelly

[anon07072023]

Thanks Sarah and Chris.  :-)

[saucygrl]

Kelly,

Not sure what part of Colorado you're in, but if you ever need a hug, I might be semi close LOL!

Chris

[SarahL2491]

Wow Kelly, you are going to be able to write a medical journal before you are thru with this journey!

You are so upbeat, we could all take lessons from you!

[anon07072023]

Thanks guys.  :-)  
I'm not sure if any of the meds I take would cause the malar rash.  

I guess looking at my face, it could be flushing, too.  I read that Copaxone could cause flushing.  I also know that carcinoid syndrome (cancer) could cause flushing.  Perhaps they want to test me for it because I have other symptoms that match it,  I've unintentionally lost 20% of my body weight - which they are considering extreme.  And I have that fairly recent heart racing issue that they've been tracking where all of a sudden my heart will start racing to at least 125 bpm at rest, and I have low blood pressure, too.  These are all symptoms my mom had - and when she died she only weighed about 58 lbs.    

I guess we'll see.  ???   I don't know....

[supermum_ms]

I'm actually glad you mentioned that point about the EMG - "My EMG & NCV tests came back normal.  He said this is typical of someone with MS, since the EMG tests for peripheral neuropathy and neuro-muscular disease.  And MS is a disease of the central nervous system, which wouldn't show on this type of test." - its how I understood it to be.

It seems to be a common enough test in the dx process for MS though I assume it has to be a rule out type, even if its 'normal' that doesn't mean there isn't still a problem, when they're looking for CNS signs. I suppose normal doesn't necessarily mean normal, it just means its not peripheral.lol

Just wondering if you've looked up the medications you take, to see if the butter-fly-rash etc are possible side affects or not? Are they even considering MS plus another autoimmune condition? It does happen, unfotunately, but it will be interesting what the "rheumatology / neurology" guy still thinks at the end of all these tests.

Dont forget to breath now, close pandora's box GF, there just isn't anything productive with letting in those thoughts, dont let them get in to your head space. Keep breathing and be patient because what you know so far is nothing really new, so chill!

Hugs........JJ  

    

[rendean]

Kelly,

You have been through so much recently and you seem to be holding up pretty well. You know you have us for support anytime.

I, too, would do the 5HIAA as well. Leave no stone unturned , especially for piece of mind considering family history.

We are always here for any hand holding, venting, shoulder to cry on  or just plain witching and moaning.

Hang in there, your results sound promising and I hope that all you have is MS.Funny that one would wish MS on someone but given your recent history, etc.  MS would probably the leas bother some of them all.

Sending ripples of good thoughts and positive thinking!

Ren