Last reply 5 months ago
Wrong diagnosis?

I was dx with RRMS without having any lesions as time went on my mobility began to decline, still no lesions. After going through several neurologist I finally got another dx of PPMS. I was placed on the Ocrevus infusion. Currently I cannot walk or even stand. The craziest thing though I have no lesions. Not on my brain or my CNS. I had a radiological lp that came back positive for a autoimmune disorder, not necessarily MS. After reading the new federal guidelines for a PPMS DX I don’t meet the criteria. I’ve had some doctors say yes, it’s MS and others say no. If it’s no then what do I have? I’m sharing this so if someone else has the same problem I would like your thoughts. Also I also have the bowel and bladder issues. Nothing wrong with my eyes and slight numbness and tingling in my arms. I thought MS stood for many scars. I feel my neurologist has just dx clinically and has stopped looking. I’ve been tested from stem to stern with blood test for other diseases that mock MS traits. The only other case I know of is, Wheelchair Komokatzi that’s his handle. Could mass doses of steroids be my answer? I’m open for questions or comments. Thank you.

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stumbler
5 months ago

@dmkfl1 , the McDonald Criteria, for formally diagnosing MS have recently been updated. But, I share your concerns regarding your diagnosis :-

https://www.mstrust.org.uk/a-z/mcdonald-criteria

I don’t feel that Steroids would be a solution. These are usually prescribed to bring a relapse to a quicker solution.


nutshell88
5 months ago

Im not sure what disorder you might be suffering
But after trying with me for 15 years to have MS treatment because i was refusing
They scaned my back and found an evidence of Marfan Syndrome
My joints are highly flexable in a weird way long nails toes
Chest hole contact got seperated
And more evidence but
I surrendered this year to gilenya before knowing about marfan
All still doubts untill i do genetic tests


nutshell88
5 months ago

So after 15 years worrying about MIt might be just a nightmare it might go and brings a more terrifying one


vixen
5 months ago

Hello @dmkfl1, this must surely be a nightmare for you. I can’t see from your profile where you are. Has the prospect of neurosarcoidosis been considered? Just a thought. It’s quite rare, but lots of overlap of symptoms. Good muck with your journey


dmkfl1
5 months ago

@vixen thanks so much for your empathy and a possible other dx. This is exactly why I posted my dx and symptoms. I go into MS sites and get blasted instead of finding something in common with others. People say, I don’t know why you are posting here, you don’t have MS. Just rude and obnoxious people. Anyway I looked up the disease you have mentioned and it’s definitely not that. I will read each reply because you never know what another person might have or know. My career, mobility, relationship has all been taken away. I’ve got to get help through Medicare for some type of home health. I’m a big mess but at least I can still communicate and I can still drive a adaptive van. I’ve got to look at my blessings and focus on what I’m still able too do. Thank you again.


dmkfl1
5 months ago

@stumbleri wish I was walking around so I could stumble. Thank you for the information. I’m going too keep turning over the stones. I might find something and if I do I hope it’s not worse than MS. I could live with a MS DX but it’s the what if’s that has me worried. Thanks again for taking the time to give me some advice. This was why I posted here. Good luck to you too.


dmkfl1
5 months ago

@nutshell88 thanks for your time and post. If you hear or read anything that applies to my situation, please LMK. Good luck with your treatment.

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