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've learned, especially after watching all that happened with my parents and how the doctors wouldn't listen and the scans missed their tumors.  I've become a squeaky wheel when it comes to my health.

I definitely think I'm heading down the right path now.  All of the diseases / disorders that they have in mind are the ones that stood out to me, too.  I do feel a bit overwhelmed.  The fact that this could be cancer really scares me.  Obviously, I want to have a CORRECT diagnosis.  Whatever that might be.  

Thanks everyone for your support!

[Sparkysarah]

Hi Kelly

I have been watching the forum hoping to hear how you got on and sharing your anxiety as I wait to take my daughter to a rheumatologist next wednesday (on my birthday). So I really feel for you in the next week while you wait for all your results. I am no doctor but it does not take a genius to look at all your photos and know that something is going on in your body that is not right. I did not think this looked like MS and I guess it is just best not to speculate. It is easy to look all those potential illnesses up on the internet and all this will do is raise your anxieties about what may or may not be. I am a fine one to talk as this is what I have done and I realise it is not helpful. It is just incredibly hard sitting with the unknown and waiting patiently. I have never been good with not knowing things and it is about control. I sense that you have waited so long that you have more patience than me and I am just glad for you that you have found someone who is testing you thoroughly. It may be an idea to think about what he said at your appointment and take any questions that you have
written down. Meanwhile just to say sending you love, support and I do believe in hope, even when things feel fairly bleak.

With love

Sarah x

[Sidesteps]

Hugs Kelly as you navigate through all this information. I will be thinking of you.

[Lulu54]

I hate typing on my iPad, laying in bed.  Excuse my errors, please.

[Lulu54]

I know that changing your dx could be so confusing and frightening but I am so glade that this doctor wants to g it right and gt the correct treatment rolling.  I'll be thinking of you. Hugs, Lu

[SarahL2491]

wow.......and some of us spent years telling them we did have it!  ha ha
so the "idiot neuro award" swings in both directions!

keep us posted on what he decides it is.  you sure have some lupus looking s/s but then not an MD here so..........

good luck and sounds like someone finally listened to you!