Multiple Sclerosis (MS) Support Group

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Bon67 03/05/2016

UPDATE: Well went to a MS specialist and even though I failed all the balance tests and with all my symptoms, he said my lesions, even the new ones are not like MS lesions, they are too small. He says he doesn't think I have MS. He blamed my lesions on smoking. I asked what the small lesion on my brain stem was, he said he has no idea, doesn't think it is anything even though I had 9th cranial nerve issues on my tongue lol, I guess all this is just coincidences. He said to just treat all my symptoms and to go see a Rheumatologist. I was so upset because now back at square one. I swear I will have to be half dead before I EVER get another MRI and go see another Neurologist. I'm done. 4 years of this runaround is enough for me, and enough to drive my crazy. Thanks for all the love. ((hugs))

bleedinblue 03/05/2016

Sorry your back to square one hang in there. Hope you may get answers soon. ( hug) Chuck

Bon67 03/06/2016

Thanks Blue, big hugs!!

marilyn4342 03/06/2016

Agree with blue, it sometimes takes awhile to get all of the answers, and the right Doctor. Just any Neuro wont work! He/she must specialize in MS. Keep trying, we are in your corner!

ChrissyH 03/06/2016

This makes me wonder, What Are MS Like Lesions? I was only ever told that I have Lesions and MS.

So sorry to hear that you are back at square one. Answers often take several years which is too late for some.

Hang in there, answers will come.

Bon67 03/06/2016

Marylyn, this was a MS Specialist.

Bon67 03/07/2016

Well, they took blood at the MS clinic when I was there, and I just got the results back. I tested positive ANA, and with my symptoms they think I have Lupus, so next stop is a Rheumatologist. Oh Lord I'm scared.

itasara 03/12/2016

Chrissy, MS Lesions have a particular shape to them... kind of like a roundish body with little protrusions (like short stubby legs) around the circumference. I'm pretty sure not not positive that this distinquishes MS from lets say Lyme disease which also shows up with brain lesions. Just wondering. Bon, I didn't see the entire story but just wonder if you took your MRI disk to another neurologist for a second opinion?

Bon67 03/13/2016

itasara, yes I got 3 opinions, they all say its from smoking. I did get a blood draw back that confirms I have Lupus though. :(

mikeb86 03/20/2016

Well a diagnosis is a start to the right treatment. Sorry to hear its lupus but i hear they have good meds for slowing it down and alowing your body to heal. Atleast you will be treated correctly now. I wrote on your other post before i saw this one btw. Good luck with your journey

Bon67 03/21/2016

Thanks Mike

southie50 04/04/2016

Hi! I'm new to this forum. I was recently diagnosed in Jan 2016. Took a year of testing. Lumbar, EEG, both came back normal. I do have the lesions, including Dawson's Fingers lesions. I was initially diagnosed with Fibromyalgia back in the late 90's. My Neurologist feels I was misdiagnosed. I didn't have a MRI done at that time, even though it was a neurologist that said I had Fibro. I've had MS symptoms since the late 80's, initially diagnosed with carpal tunnel. I was also tested for lupus, lymes and sjogrens. All negative. It does take a long time to correctly diagnose MS, and it is very frustrating. Hang in there Bon67! :D

Bon67 04/05/2016

Thanks Southie, I was finally diagnosis with Lupus/Mixed connective tissue disorder. FINALLY a for sure answer.

LillyPotter 04/07/2016

Bon, i am sorry for your dx but at the same time i know it si good to have the dx as you can know what it is you are fighting. it is good to know. so many gentle hugs, Lilly

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