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]

I'm with you.  I need someone to look at the big picture. I'm not sure if I have MS plus something else or what.  I know the other things they had tested me for could cause lesions, but I don't think neuro-muscular diseases do.  Plus, I have the brain atrophy like you said.  If I don't have MS, something has to be causing all of this spasticity/weakness, etc.  

My grandma had told me this morning that my grandpa initially tested negative for polymiositis and then they either continued to test him or did more testing or both. And he ended up having it, even though it was initially negative. Same thing happened with my mom's carcinoid syndrome tests intially and the first few times they tested her - she was borderine/high normal.

Yes, carcinoid syndrome is carcinoid cancer.  

Thanks for explaining the needles.  Acupuncture-like needles don't seem so bad I guess....

  

[Guitar_grrrl]

Hey, Kelly,

I've had EMG on my legs, and it's not too bad, FWIW.  The needles are tiny.  Have you ever had acupuncture?  It's not too different than that, and the charge is tiny.

Thanks for keeping us posted.  Sending good thoughts your way...

[Sidesteps]

Hi Kelly - we haven't really "chatted" much but I wanted to reach out after seeing these updates.

The EMG I had wasn't that painful. The doctor thought I had a huge pain threshold but I now realize I think it's because my lower extremities are partially numb. lol ~

I don't know about carcinoid syndrom. What is that Kelly? Cancer?

Also, I thought you had pretty significant brain atrophy.  How does neuromusclular disease or carcninoid syndrome explain the lesions and atrophy? Did they explain that?

I am concerned that they are still not looking at the larger picture here. What do you think?

[anon07072023]

My labs all came back good, which is good and bad. They say they can't believe it after see how I am and also the pics I brought with me last time.  

Now they are thinking neuromuscular disease of some kind.  And strangely enough, they're also looking at carcinoid syndrome and asked if I've ever heard of it.  Um, yah, that's one of the things that killed my mom and they still wonder if my brother has it or not.  

They are going to schedule an EMG on my legs and that region, and from what they told me, it's going to hurt.  
I'm also getting the carcinoid test again.
Thanks everyone

[anon07072023]

Yes, thanks for posting the symptoms.  That does help me understand it quite a bit.  I have maybe about half of those symptoms.  Actually, the drenching night sweats is what led them to do the 1st CT scan.  So, I guess the door is still open for well, I guess, just about anything...

[summerluvr]

Hi Kelly,  My case was pretty rare, Neuro had never heard of any other case of possible ms turning into Multiple Myeloma.

Many of my MS like symptoms (neuropathy in hands, trouble with a leg, facial nerve issue, frequent migraines, vertigo, extreme fatigue - falling asleep at 7pm on the couch and getting up at 9am next day feeling exhausted, foggy vision) were caused by a rare symptom in Multiple Myeloma called Hyperviscocity, which means my blood had so much Myeloma protein in it it could not flow right.  My Oncologist said only about 5% of Myeloma patients have this, which might explain why even at diagnosis they could not figure out my symptoms.

The mare characteristic MM symptoms are frequent infections (like sinuses and ear in my case), bone pain (i had this pain on a rib and could not sleep on one side) particularly back pain from Myeloma bone lesions, nausea, weight loss, nightsweats, weakness.  There can also be kidney failure (I did not have this), or other organ involvement (had a spot in my liver but it went away with treatment).

And then the common issue since MM is a blood cancer, the blood work usually shows the elevated protein levels, anemia, low white, low platelets because of the bone marrow malfunction.  The basic CBC test and a blood test called a SPEP are what they use to monitor me.

Hope this helps!