Could it be MS?

[brwnbaby]

For the last 11 months, I have been experiencing numbness and tingling in both feet. I have noticed when its cold I feel worse. I also have numbness, tingling and weakness on my left side in my hand and lower arm.

I had a MRI in April 2023 with no contrast; both came back normal. My symptoms have continued and now are getting worse (moving up my legs and more widespread on my left side).

Most labs have come back showing I have some type of underlying inflammatory condition, most of which they point to anemia or B12 deficiency (although my B12 and Folate levels are fine).

I recently had a LP that showed I have more than 5 bands. My doctor says its not MS but is ordering another set of MRIs and suggested I see a Rheumatologist.

Adding to my backstory, after I had a hysterectomy in Oct 2020, my labs indicated high liver enzyme levels. Long story short, after months of labs and test, I had a liver biopsy which indicated a high lever of stored iron (my liver iron was 12000 when the normal should be 1800 max - no i did not accidentally add a 0 🙃). An iron panel was done and my ferritin level was over 1300 (normal should be 200 max) My doctors diagnosed me with Hemochromatosis (Iron Overload) which has been treated with regular phlebotomies. The phlebotomies have left me severely anemic so they have been on pause. (I can't take iron due to my body overloading on iron so if I really do have a severe case of anemia, no one will treat it at this time.)

Any thoughts on what other conditions show bands that mimic MS?

[goatgal]

No one on the forum can diagnose MS. Though you may already have done so, get a consultation with a neurologist, preferably one who specializes in MS. I hope you find answers to your questions.

[brwnbaby in reply to goatgal]

thank you! I definitely understand no one can diagnose me, I'm just trying to get a few other varied opinions of others who may have been in a similar predicament. I am seeing a neurologist (I forgot to say that), apparently a very good one because others have mentioned her by name before I even said who I was seeing.

[Frances_B]

Goatgal is correct - no-one here can diagnose MS and certainly not on a few sentences in a post. However, there are a few things to consider, especially as Dr Google is very fond of leading people down assorted garden paths. What might be referred to as "normal" levels of B12 and folate may actually be "low" for some individuals - the the bottom end of the B12 reference range in many countries is set very low so while someone might on paper have apparently OK levels, it may not be enough for their own individual body's needs.

You can have an anaemia which is caused by not enough B12 and folate irrespective of your iron levels so maybe talk to your doctor about taking some B12 and folate supplements and see if this helps - as B12 and folate are water soluble any excess your body does not need will just be piddled down the toilet and while nothing else is being done it could be worth trying. Were your bloods being checked before each phlebotomy was done to make sure that you didn't end up anaemic from them?

It is unlikely that you have MS if your recent MRI was normal. Also, oligoclonal bands are not exclusively an indicator of MS - there are many other diseases where they can be found in CSF. Nor is an LP a "definitive" test for MS - despite what some people might try to tell you. Please don't let the following list send you into a panic - I've only provided it to show that more than MS causes O bands in CSF - and because the "LP is definitive for MS" brigade can sometimes have blocked ears if their opinion is challenged.

"Apart from MS, there is a long list of diagnoses with CSF OCBs reported: systemic lupus erythematosus, neurosyphilis, neurological paraneoplastic disorders, Behcet's disease neuroborreliosis, aseptic meningitis, neurosarcoidosis, HIV infection, cerebral tumors including lymphomas, Sjögren's syndrome, herpes encephalitis, Morvan syndrome, Anti-NMDA and other autoimmune encephalitis, neurotuberculosis, anticardiolipin syndrome, HTLV myelopathy, prion disease, schistosomiasis, stiff-person syndrome, cerebral cysticercosis, GBS, CNS vasculitis (20). One must be careful however, in our experience running a clinical CSF lab for decades, we rarely detected OCB in solid cerebral tumors, prion disease, or GBS for instance."

frontiersin.org/articles/10...

Getting further MRI done and see a rheumy seems sensible and appropriate. Good luck and I hope you get some answers soon.

[brwnbaby in reply to Frances_B]

thank you for your reply and additional information! yes, they checked my hemocrit and hemoglobin levels before each treatment. they were on the lower end but not as low as they have gotten now.

[mrsmike9]

I do have MS and even though my MRIs have been stable for several years, my neuro told me that anemia was causing my latest issues. You said you are anemic so maybe???

[brwnbaby in reply to mrsmike9]

thank you!

[Jesmcd2 CommunityAmbassador]

Hi brwnbaby welcome! 🙂 Im sure you have a ton of questions! But No One here can dx you! And believe me when l tell you, you dont want it! That being said, there are many things that mimic MS. So ruling those out 1st, is what drs do. Find an MS Neuro, and have them read your MRIs. 🤗💕🌠🎄

[brwnbaby in reply to Jesmcd2]

thank you! I forgot to add, I am seeing a neurologist, a pretty good one that does specialize in MS.

[Jesmcd2 CommunityAmbassador in reply to brwnbaby]

Then he is going to let you know 🙂🤗💕🌠

[NorasMom]

I don't like your doctor saying "it's not MS" at this point, because I had too many do that to me, but I do agree with the idea of seeing a rheumatologist. I understand how frustrating it is to not have a diagnosis, but you have so many different things going on that it's going to take a while. Just don't give up!

[brwnbaby in reply to NorasMom]

Thanks! me neither; I have been told its a snowflake condition so no two people are the same but just trying to figure things out.

[brwnbaby]

Thanks all for the replies so far! I do understand no one here would be able to diagnosis me. I am continuing my search with the doctors but just getting varied thoughts.

I forgot to say I am seeing a neurologist (and a hematologist, cardiologist, gastroenterologist) in addition to my PCP. My neurologist is the one order most of the test. I will say with a few of my doctors, by me asking other and pushing them more (advocating for my own health) I've been able to get this far. Initially I was just flat out told anemia with no resolve but just to take supplements (which aren't improving things).

[NorasMom in reply to brwnbaby]

Yeah, you definitely have to be your own advocate! I failed at that for so many years because I was raised in a household where you see just one doctor and take their word for everything. That doesn't work. You have to talk back and speak up, because you know what's happening to your body more than anyone else ever will. You just need their help to figure out why. It sounds like you're making all the right moves, so just keep plugging away at it.

[brwnbaby in reply to NorasMom]

thanks! yes, definitely learned to break that generational curse and speak up!

[Tazmanian]

Many things mimic MS check with a neurologist

[Scout4x4]

I would follow up with the Rheumatologist. Neuoropthy can those problems as well .