My recent life with MS fear

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My recent life with MS fear

Postby submarine on April 10th, 2012, 4:21 am

It's quite long and please forgive my English.
Hi, I'm a 26 y/o Asian male. And like some people on the board, I'm a hypochondriac guy. And my neurologist is a specialist of MS.
My left twitch/or so called wrist spasm began from last Oct and it is that time that I first knew BFS and MS. I visited numerous doctors and only my current neurologist thought that I have something wrong and worthy to check it out. I had blood checkup/SSEP and then Brain MRI on a 3T mri w/o contrast last Dec. and all checkup turned back clear. My neurologist attribute all of my symptoms to the stenosis of a brain vessel. My symptoms did calm down for about 2 months.

However, as most neuro related symptoms calmed down, my muscle began to sore and my first self-diagnose is Polymyositis. After some blood checkup, I ruled out Polymyositis/RA but the sore persisted body-widely. My next self-dx is Fibromyalgia and I did have those tender point on my body but I did not officially get the diagnose from doctor. My neurologist think it is peripheral neuropathy or some vessel problem.

Things did not get better as time goes by. I recently experience slight body wide tingling and it wax and wane during the day. The tingling sensation seems to be the last straw that I convinced myself that I have MS. I rushed to my neurologist's office and he gave me another SSEP test to check whether things went worse. The SSEP was still clear. I know that it is possible for MS to have lesions only in the spine and I asked my doctor whether I should have a spine MRI to ruled out MS. He didn't there is a need to do the spine MRI according to my normal SSEP test and I didn't not fit criterion to have my health insurance in my country to cover that expense.

In that night of the SSEP checkup, I suddenly felt that part of my spine were numb and felt uncomfortable in the supine gesture. Of course, I were freak out that night and rushed to my neurologist the next day. He tapped my spine and I did had some strange/numb sensation. Then he wrote on the computer: C7-T5 Lhermitte's sign positive, possibly due to partial myelitis. Multiple Sclerosis and Neuromyelitis Optica needs to be ruled out. Then he ordered an cervical spine MRI w/ and w/o contrast at the spot. And he gave me a three-day high dose steroid prescription to prevent any exacerbation before the MRI. My neurologist, who is a MS specialist think that it is highly possible that I have Neuromyelitis Optica (in my country, some people called it Devil's Disease because of its alias, Devic's Disease). And it is when I know what Neuromyelitis Optica really is. It is a disease that has poorer prognosis than MS, it highly disables people and there is currently no way to delay its progress like those interferon for MS. It is really terrifying for a hypercondriac like me. I convinced myself that I did have myelitis and I read a lot of book about how to live with MS or something like that. I waited for 11 days to have my c-spine MRI conducted.

I had my MRI finished yesterday and went to my neurologist's office to get my life sentence like a prisoner. Miraculously, the C-spine MRI came back clear. And my neurologist didn't think that I need to keep taking steroid since there is no evidence of inflammation. He said it is the inflammation on the peripheral nerve (too small to show up on the MRI) that caused the symptoms I have. And all I need is to take Vit. B12 and keep regular hours.

I'm now try to accept that I didn't not have MS or Neuromyelitis Optica but the tingling sensation always worries me that i have something wrong. Objectively speaking, I've got enough checkups to rule out MS etc. (2 normal SSEP/1 clear Brain MRI w/o contrast before some symptoms/ 1 c-spine MRI w/ and w/o contrast). And if I want to have another follow up brain MRI to have a peace mind, I have to pay on my expanse. What's your opinion?
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Re: My recent life with MS fear

Postby MarioMangler on April 10th, 2012, 10:17 am

There are a ton of people on this board who originally thought they had MS at first (myself included). No one here has ever actually had it.

The first thing you need to do is stop reading up on syndromes and stop self diagnosing yourself. That never works out for anyone.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: My recent life with MS fear

Postby Aoi on April 11th, 2012, 5:04 pm

Glad to read that you don't have MS, Devic's disease, or any other demylenating disease or inflammatory neuropathy. Having had tingling and other parasthesias in all four limbs for coming on 12 years, I can say that it is a frustrating way to live. Fortunately, the vast majority of people who have this kind of problem have it go away in weeks or months.

If you are medically obsessed, as a lot of people here are, then turn your focus toward being health-obsessed. There are a wide variety of ways to reduce parasthesias as well as the anxiety that may co-occur. Also, may I suggest that you have your vitamin B12 as well as vitamin D levels checked. Low levels of either can cause parasthesias. If they are low, then not only supplement as appropriate but also figure out why.

It is possible to self-diagnose, but only if you have the same level of knowledge as a specialist does. Since BFS-like symptoms can be caused by neurological disorders, metabolic disorders, autoimmune disorders, etc., it's unlikely anyone could self-diagnose. Better to focus on health and wellness.
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Re: My recent life with MS fear

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