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

[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

[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!

[supermum_ms]

Hi Kelly, i so didn't expect to see this this morning, wow girl you must be in a spin!! Firstly HUGS!!!!!!

Secondly - take that deep necessary breath, and hold your horses gf, you dont know for sure its any of those things right, no point jumping to the uglyiest one on the list. It still could be none of them, wait until the dr's have finished fishing and then let your self have a much needed freak out, wait first though :-)

If I was someone who gambled i'd of been considering putting my money on Lupus, not much causes that butterfly rash and your combo of sx but you've got brain lesions right, so thats suppose to be 'rare' in Lupus. So i'm thinking its possible the Lupus like sx could be a drug induced reactions over a condition thats quite rare and drug reaction is the most common cause of the rash. hmmmmm its still possible to have MS and another autoimmune condition, lol can you see how there isn't much point in worry too much until more facts come in, its sort of like chasing your tail until then.

I'm not sure the lymph node findings exactly have any huge significance, my google brought up this.....

CONCLUSION. Incidental finding of mesenteric lymph nodes is common, reflecting more widespread use of thin-collimation MDCT and PACS workstations. In general, these nodes are small, measuring less than 5 mm. Such nodes when found in an otherwise healthy population are clinically insignificant and require no further imaging.

http://www.ajronline.org/content/184/1/41.full

Take a breath, be kind to your self and dont jump to any conclusions just yet cause its only going to keep you spinning, breath!!!

HUGS.............JJ

[anon07072023]

Thanks for your input JJ.  You're definitely right about not knowing if any of those are going to end up on my plate in the end.  

However, I do know that the radiology report specifically pointed out the mesenteric lymph nodes and said that it was more than likely related to an  "inflammatory or malignant process."  And earlier today, I found in the book a lot of radiologists use, Ioachim’s Lymph Node Pathology Book, that these nodes are the 2nd most popular for SLE Lupus to invade. So, it could definitely very likely be Lupus.  You'd be winning big money on me !!  :-)

The brain lesions that I have are very few. The radiologists always put in my MRI reports that just a few scattered hyperintensities - basically nothing more than typically seen in the population.  And my current neuro that I had moved over to last July had told me that she doesn't know if she would have diagnosed me with MS, but said she wouldn't take away my diagnosis since the Univ Dx'd me based on what they saw on my MRI & symptoms.

Plus, I'm not a normal healthy population with the lymph nodes. The whole reason why my primary care doctor did the ct scan is because I haven't been well in a long time.

I really wish I could take a deep breath.  That's good advice.  I need to learn how to relax and have less STRESS.  That's probably one of my short-comings.  I also get nervous / anxious fairly easily. Which I know isn't good for me.  It's just something I can't seem to help/control, especially with all that's been going on for so long.

Thanks again!


  

[ku111]

Sometimes it only takes one person to listen!  I hope you have found that one person and they can take a fresh look!  Anything to get you feeling better.  Can be so complicated sometimes.  Wish it weren't that way.  Many hugs your way!  I am anxious to hear the results and a plan for you.

[anon07072023]

Thanks, It is nice to get a chance to have another set of eyes looking at all that I have going on.  Many of the autoimmune diseases seem to be so intertwined.