Patients Multiple sclerosis
Topic of the discussion
Posted on 5/29/18 1:27 AM
i am currently seeing. A neuro for some issues I have with memory and numbness and tingling. I also have something very similar to the MS hug that is almost debilitating when it happens. I had an MRI that showed periventricular white matter hyperintensities. I’m only 36 so this was concerning. No history of HTN or diabetes etc. I had a negative lumbar puncture. Now my neuro is saying she does not think MS but that maybe I was “born with the white hyperintensities” or maybe it’s “normal early aging” and my symptoms are from vitamin issues. My B12 is normal but borderline. vitamin D is low.
She wants to just follow up in 6 months with another MRI. Should I get a second opinion? I have no visual symptoms. Mostly the numbness and tingling in my arms and legs and the pain/pressure/squeezing in my Lowe ribs/upper abdomen that makes it hard to breath. Comes and goes and I have no cause determined yet. Any advise?
Beginning of the discussion - 5/29/18Unsure of my diagnosis - any advise? Should I get a second opinion? https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/unsure-of-my-diagnosis-any-advise-should-i-get-a-second-opinion-173
Posted on 5/29/18 4:27 AM
@Sillysarah8466, I would always recommend getting a 2nd opinion! Did you have any symptoms pre-6 months?
Posted on 5/29/18 5:00 AM
Yes. Ive always had muscle aches and fatigue very out of proportion with what is expected. Always depression. But the memory loss started about 2 months ago. Numbness and stuff a week I guess but I’ve had that in the past. The stomach/chest spasm issue has been for about a year on and off. Brain fog on and off also. Very vague stuff but just not right and then to see the MRI made me wonder. If it weren’t for this chest/abdomen spasm pain or whatever I might not be so worried. It is just so much like the “hug” everyone describes. I’m going to talk to my regular pcp Thursday and see if she can refer me just to get a second opinion. I just hate sounding crazy and paranoid lol. I just feel like something is not right.
Posted on 5/30/18 6:38 AM
I had a thoracic MRI. Does anyone see anything up toward the top? I think it’s T1?
Posted on 5/31/18 3:34 AM
Hello @Sillysarah8466, what did your doctor say per the MRI?
Did you seek out a second opinion? Any updates?
Posted on 5/31/18 4:21 AM
Radiologist report did not mention the spot. I had a chiropractor friend look at it and she said she definitely sees something and to get them to reread it. Waiting to hear if they will. But going to see another neuro Friday to see what he thinks. I’ll update Friday!
Posted on 6/3/18 2:42 AM
Went to another neurologist. He didn’t look at my actual cds with the images. He said I don’t get enough sleep, my mri is probably from migraines (which I don’t have) and that my spine mri was just showing a “blood vessel). And that the MS hug symptom that is identical to most descriptions is likely shingles (even though I’ve never had a rash on my body)! I’m 36 and this was his opinion. I am so completely baffled. I can’t imagine the constriction I get around my chest/abdomen is anything but MS or a nerve damage. And I have had about 2 major headaches and he said that’s all it takes to cause those changes. And now I’ve started have some loss of bladder control. This is ridiculous. Even my husband thinks I just “want MS” because he thinks I’m “done with life”. That makes no sense! I want a diagnoses so I can start treatment now so I don’t end up more disabled. So difficult.
I have asked my other neuro if she can just repeat the brain MRI and include a sagittal view since the original didn’t and she said she can’t tell for sure if the “Dawson’s fingers” are there. Hopefully she at least does that. There’s another MS specialist suggested by the MS society that is about an hour away but I may go see her. Feeling kind of hopeless. I have a history of depression and have been on meds for over 10 years and am very stable but as soon as I see my meds, they think I must be paranoid. Terrible that the discrimintation still exists in the medical field.
Thanks for all the support on here :(
Posted on 6/9/18 2:31 AM
I saw an MS specialist today. She was SO helpful. She did actually find 2 lesions on my spine that were not noted prior. She said we are definitely down the right road with MS and that we will repeat the MRIs in 6 months. She said she will treat me with a low does immune modulating medication if things worsen soon or if there are changes in my MRI in 6 months. She said the abdominal chest issues are most likely MS hug and I have a lesion to support that. She even said she’d question the diagnosis if i WASNT on antidepressants. She said they go hand in hand.
She said if they follow me for a while and no change, it’s still a neurological condition regardless and we may treat it the same. She said MS is a broad “syndrome” type illness and some don’t fit perfectly in the defined diagnostic criteria but there are many neuro conditions that just don’t have names. She’s definitely leading to MS though. Just glad to know that the MS hug situation won’t kill me or anything lol. It’s the scariest symptom of all.
Posted on 9/19/18 7:03 AM
Hello @Sillysarah8466 how are you doing? I am just checking in. I hope you are doing well. Please keep us updated.
Posted on 9/19/18 7:06 AM
actually pretty rough. Thanks for checking in. I was officially diagnosed a few weeks ago and just started on Copaxone 40mg 3x a week. Hasn’t been too bad other than a rare reaction Saturday that caused a psuedoexacerbation. Also lost my job so things suck lol. Hopefully get better from here lol