MS CoNfUsEd: I have been having symptoms... - My MSAA Community

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MS CoNfUsEd

MSconfused86 profile image
7 Replies

I have been having symptoms of MS for over a year now. Tingling and numbness of the legs, hips, arms, burning of the left leg. I went to my chiropractor last summer-- 2017, and they said I should see my neurologist because it sounded more like MS than anything they could help me with. I had an EEG, MRIs, Neurology tests, and nothing came up. After that, my symptoms went away and didn't return until this summer. And a new one was my vision changing. I didn't think anything of it, thought it was just my eyesight getting worse, but then I decided to go in and my eye doctor told me he could see something, but referred me back to my neurologist. Everything came back normal on the MRI's again. but then they did a spinal tap and my oligocolonal bands and numbers were way off and have had to do steroids. they are even talking Pheresis to try and save my eyesight. I also have Opticical Neuritis, and the nerves in my left eye are shot. I don't know if I have been diagnosed with MS, but my Neurologist and Ophthalmologist agree to send me to an MS specialist. Symptom wise--- what do you think? Could it be MS?

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MSconfused86
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7 Replies
pamgarner profile image
pamgarner

an ms.specialist should be able to figure it out for you,I am like so many of us going through different diagnosis for a couple of years before they figured it out, the kicker is my GP. has M.S. you would think he would be suspect huh? I wish you the best, it is absolutely a journey wishing you alittle sunshine today pam

greaterexp profile image
greaterexp

The symptoms of MS are so varied! In fact, if you were to talk to anyone with any symptom of any kind, we'd all agree that it could be MS! That said, you are on the right track to getting a clear diagnosis. It's a long process sometimes, but necessary if you want the correct treatment.

We wish you well with this process. If it should turn out to be MS, this group is marvelous for ideas, information, and support.

Check out MSAA, too.

mymsaa.org/

Iona60 profile image
Iona60

Sounds like your Drs want the MS specialist to be the one to give you a definitive MS diagnosis. It's great that they are being aggressive with the steroid treatment and possible pheresis. Hopefully, this will calm your symptoms down while you wait for the appt with the specialist.

SueAB profile image
SueAB

MSconfused86! I love your name - I think all of us can relate to it! Nobody wants to be labeled with MS and I truly believed doctors are very reluctant to put that diagnosis on your record until positively sure.

CraigS profile image
CraigS

Since there is no test to determine a diagnosis for MS, the neurologist have to rely on your symptoms to make a determination. We all have different symptoms and it is tough to be certain. Yours sounds a lot like what I was going through, (pain in the leg, numbness, tingling, etc.) it took many years to get a final diagnosis and when that happened, it was scary. I didn’t know anything about MS. Being confused is probably the best way of saying what many of us are feeling. Every day is a new day of coping with the disease. It totally sucks and I’m very sorry you are part of the crowd. I hope you will find this is a place to get some advice from the many people that have been dealing with this for a long time. I am also fairly new to this and I find this group to be a great place to hang out with.

Good luck, we all need it.

kycmary profile image
kycmary

Sorry dear yes it does some Drs. don't want to jump to jump in too fast as there are over 500,000. 1st cousin diseases out there. Good luck I hope it's not but …

kdali profile image
kdali

It could be, but they are probably trying to rule out one of the weirder more complicated diseases that are often missed by being called MS, while treating what they can right now. I’m assuming the steroids didn’t work and your vision is completely gone? And your got a neck MRI, not just brain?

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