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]

Ha, thanks Tammy.  Kind of strange to say we hope the doctor is wrong, but I kind of do, too.  Although, that still leaves me wondering why I don't fit into RRMS when I have that Dx & other unrelated symptoms.  Hopefully, I'll see in just a few days...

[maxthecat43]

Wow, Kelly!  Not sure what to say, except I wish you well.  I hope your new doctor is wrong, and you don't have any of those diseases, but I am so very relieved that you are being properly cared for, at last!

(((HUGS,)))
Tammy

[anon07072023]

You've always been very encouraging to me from the beginning Mary.  I really appreciate your thoughts/words that you have given to me.  Yes, this is stressful, but as you mentioned, it is also FINALLY a relief that someone is listening to what I say.  It almost feels like I'm going to be taken care of - whatever it is.  The doctor and the NP both seem to be very caring individuals.  

Ah, summerluvr - I do remember you commenting several times on other posts about your multiple myeloma.  Who knew that that would be one of the things they'd be looking at for me.  If you don't mind, I was wondering what some of the cancer symptoms were that you didn't realize were symptoms?  Not that I think I have cancer; it's just so that I know.

Thank you Ren.  Yes, finally I don't feel like I'm talking to a wall.  (That's only acceptable on FB, right?)  :-)   Lupus would definitely beat out cancer, if I had the choice to pick one or the other.  I feel very encouraged right now with my doctor and that he will figure it all out and we can start treating whatever it is.      



  

[rendean]

Dear Kelly,

It's good to hear that after all your advocacy on your own behalf that you have finally found someone who believes you and is willing to find out what is really wrong with you!

I'm hoping it's something as simple as lupus, not a great choice but neither is MS, but it beats cancer. Your doc was right, there are treatments  and improvements in treatments for almost everything.

Sending waves of good wishes your way along with requisite hugs with each wave.

ren

[summerluvr]

Hi I"m glad you are getting a thorough work up to get the right diagnosis, (and the right treatment!) so you can feel better.

I am a non-ms diagnosis myself.  After three years of symptoms, countless doctors, finally ended up in the MS clinic, and was getting symptom treatment but not much else (never so far as diagnosed with MS, but a possible MS) when I kept feeling worse and worse.

Eventually had a crisis, collapsed at work and was diagnosed with Multiple Myeloma after a trip to the ER and a referral to the Internal Medicine team at my hospital for hard to diagnose, or complicated cases. When the internal med. team examined me and asked probing questions they uncovered  many Cancer symptoms I had been experiencing, but didn't realize they were symptoms

Lupus was a possible differential diagnosis in my case since I had a elevated Sed Rate, CRP, and I had blood irregularities including high protein, and rashes (livedo, raynauds), and since my age (32) Myeloma was a very rare possibility. But once the the blood work came back with a strong evidence for Multiple Myeloma (called an "M-spike" on the test called an SPEP) bone marrow biopsy confirmed it

I'm doing well though, have been in remission since shortly after my stem cell transplant  nearly 2 years ago.

[twopack]

Oh Kelly, my reaction is so, so mixed.  I know these aren't the kind of things you wanted to hear even if you did have personal suspicions.  I also know you’ve shown the will and determination to never be satisfied with less than the truth.  Your struggle may have seemed subtle but it has also been solidly persistent.  This pit stop with a rheumatologist sounded like a terrific idea and I so hope it leads you to the answers you need.

I am so impressed by the quoted words you shared that came from this obviously caring and straight forward physician.  He must also be quite a compassionate human being.  That’s not a combination we see often enough.  I'm so grateful you finally found Doc Rheumy and managed to glide straight into the inner offices of his practice.

Your trepidation is apparent (and totally understood) but I also sense a peace about you - at least a lack of the frustration that has so often followed most of your doctor visits of the past.  That is huge.  Being able to trust your health care provider / investigator?  It  is absolutely.... HUGE.

Please know that you are held tenderly in the hearts of so many of us in this community.  I’m sure you will fill us in as you gain more info and process all this yourself.  Until then, and after, I wish all good things for you.

Mary