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

[sllowe]

Oh, My Kell!

I'm so glad someone is listening :) My thoughts are with you while get through these tests. I hope they find out exactly what one it is, and that you can indeed be treated, and healed. You go through so much already. How are you feeling about this turn?

[figuerpa]

Glad to hear you found a doctor who is willing to listen to you. Unfortunately you may have another disease but thankfully there are treatments out there for it and hopefully you can get on the right medications so you can start getting some relief.

I hope they get the results back and get back to you right away, so that you can get some answers that are a long time coming.

I am sure that you are full of different emotions at the moment, but just know that you finally have a doctor working with you and that is the best news of all.

Keep us informed,
Paula