Could this be MS or does it sound like something else?

[kdlalib]

I've been undergoing the MS diagnostic process for about 3 years. I used to take a drug for psoriatic arthritis, humira, that can induce MS or MS-like symptoms in rare cases. 3 years ago I had a 6-month bout of uveitis. The doctors couldn't figure out what the underlying problem was, so they ran me through a MRI. They found 1 possible MS lesion or UBO. Then a month later, I had tingling and numbness on the left side of my face, extending down through my left arm. I also had burning sensations in  my fingertips, and buzzing in my fingertips. I went to the hospital thinking I was having a stroke. During the neuro exam, I had decreased sensation on my left side along with abnormal reflexes on my left leg. I was MRIed again. This time, there were 3 more possible lesions or UBOs. The doc immediately took me off humira and my symptoms started to subside, though it took awhile for them to go away completely.

At that point, my neuro said it that the humira induced MS or MS-like symptoms. He wasn't sure if it was full-blown MS or just drug-induced MS that would resolve itself when I stopped taking the drug. The doc gave me 3 follow-up MRIs, all of which showed no new lesions, but the spots they found were still there. He said we should wait for a second attack and MRI then to see what happened.

Two and a half years passed with no symptoms at all. I thought I was in the clear and that the drug is what caused my symptoms. Without the drug, no MS.

However, three weeks ago, I started to have the tingling and numbness mostly on my left, but on my right as well. The tingling extends from the top of my head and down the left side of my face and through my arm and hand.  With the tingling I also get goosebumps, but only unilaterally, on the arm experiencing the symptoms. I also have burning fingertip sensation and during my neuro exam, they found I was positive for L'Hermittes sign. When I bend my neck to my chest, a jolt of intense pins and needles goes down my right arm. I'm also experiencing decreased sensation to touch and temperature on my left side. They're going to MRI me as soon as possible and see what's going on.

My question is does this sound like MS? Is there any way it's not MS, but another disease that's symptomatically similar? If it's really MS, can I have gone two years symptom free, just for it to restart?

[kdlalib]

Will the doctors really not diagnose me until they see more lesions on the MRI? They've excluded all other possible diagnoses, they've seen lesions once before (when I had CIS from humira), and it's been two years since my last "attack." Doesn't that meet the diagnostic criteria? Or are visualizing the lesions on the MRI necessary for diagnosis?

[kdlalib]

In my case, it isn't about the doctors excluding other possible diagnoses. They're not concerned it might be Lyme or something else. When I had my first attack, they called it Clinically Isolated Syndrome as the result of humira, which was the drug I was taking at the time that can induce full-blown MS or MS-like symptoms. Basically, if I have another attack, which might be what I'm having right now, and they can see it on the MRI of my spine and brain, then I'll get the MS diagnosis. These are the first symptoms I've had since my first attack two years ago.

What I'm worried about is that they still might not see it on the MRI and I'll remain in limbo. I know that tingling, numbness, l'hermittes sign and burning sensations aren't dangerous. But they're sitll petrifying and I'd rather have the diagnosis, so the doctors will finally do something about it. Being in limbo is awful. I just want to know or have a good idea that they'll see lesions again.

[SarahL2491]

this probably will discourage you and I don't mean to, but my doctor felt mine started in 1981 and I did not get a diagnosis until 2011......so it was a long and frustrating time.  My 1st lesion showed up on my 2004 MRI but everyone ignored it til my latest neuro got really upset that everyone had missed it and the letters from my eye doctor and he made the Dx.

Some are lucky and get a Dx right away, most spend time in limbo land for various time periods.  

Be patient but be pro active for you know your body better than anyone.  Don't give up!

[HVAC]

I know this is frustrating and you would like an answer. No one wants to be in the middle of the process with no clear answer. It can be nerve racking. You are not alone.

Short answer this is a hard one for Neurologists to sort out as is with most of us. There are so many things which act like MS. It took Doctors decades to figure out what was wrong with me and I was clueless I had a problem at all. I thought they were full of it beans telling me I had something neurologically wrong.

Alex

[jenphilly]

I think many people will comment that we can't say yes or no that's its MS...   Unless we have a doctor in hiding here :)

Your symptoms could very well be MS, but there are so many disease that MS can mimic that doctors may take the path of elimination, that's the one I walked.  

If you have MRIs done and the lesions are gone, that would be very interesting, essentially once they are there, it's damage done, the body can do some repairs and healing on its own, but as my doctor explains it, once they are there, they are there.  

It took brain, cervical and thoracic spine MRIs (my brain is clear, but spine has lesions), but even with those MRIs being positive, the doctors still were thinking lyme.  Lyme and MS can present exactly the same, even the lesions....  for me, it took a spinal tap for the final decision that it was definitely MS and nothing else could explain all my symptoms / diagnostics...  

Sorry you're dealing with all this, know for me, it was a rough 6 months.  Everytime thinking there is an answer and it's just one more thing it wasn't.  Was not happy to have MS, but was relieved to some degree to know what we were dealing with and kinda hit it head on.  

Good luck and please keep posting and sharing what you're doctors are telling you!   Are you working with a good neurologist who has some experience with MS?  

Jen

[kdlalib]

Also, what happens if I don't have lesions in my spine or brain. Does that mean I definitely don't have MS even with my history and symptoms?

[kdlalib]

BTW, if this is MS, this would constitute as my second "attack." Does this meet the diagnostic criteria for MS with the need for having dissemination in time?