Diagnoses? (confused)

[alfiesgorge]

I have numbness in my fingers and toes, it was all over but its gone from the other parts of my body now.  I also had a banding sensation just under my bust. When I lower my head I get like electric shock's that travel down my spine and legs.  I have 7 white dots (lesions) on my brain scan and 3 on my spine.  The numbness is still there in my fingers and toes and has been there now for 7 months.   They have also found O bands in my spinal fluid.   My diagnoses is Medical Mystery is this right or normal?  

[COBOB]

A negative VEP only means nothing has attached your optic nerves, chasm or tracts.  
If you have one attack and two or more MS lesions on MRI, that meets the criteria for Clinically Isolated Syndrome (CIS).

No Medical Mystery.  You meet the criteria.

Bob

[Lulu54]

What's a medical mystery to me is how so many folks in the UK can be fobbed off with these glib answers rather a serious look at  your problems.  It sounds like you are having neurological symptoms, and waiting further to treat them makes no sense for your long term health.

For the financial health of the NHS, it seems those of you  in the UK are truly being set aside, hoping you will get discouraged and stop seeking MS treatment, which is very costly.  

Sorry, but the MM comment is just wrong - that is no diagnosis.

welcome to the forum,
Lulu

[anon07072023]

Typically, the neuros want to see dissemination in time and space. So, if you're numb/tingling body was at one time and then later on down the road you started to present with the electric shock sensations when you bend your neck - that might count as 2 separate attacks.  

How long ago was this MRI done?  (If it was a while ago, then maybe it's time for another MRI?)  I'd say at the very least you have had a clinically isolated syndrome (CIS).  And at that point, many MS neuros would decide to have you start taking disease modifying drugs (DMDs), to help lessen your disability in the future. (Especially with your symptoms and your lesions.)  And many insurance companies will cover this.

I certainly don't get how your doctor could say that you are a "medical mystery."  That's kind of scary that you had to mention MS to your doc.  Are you seeing an MS neurologist?  
You seem almost text book MS to me....

Good luck,
Kelly    

[alfiesgorge]

I did have blood test's dont the same day I had the Lumber done but I have no idea the out come of them he didn't say.  I did however ask for the blood test for Hughes Syndrome.  So Im waiting on the results for that...had that done on the 6th Dec.  

[HVAC]

Neurologists seldom diagnose MS right away. All my tests and symptoms pointed to MS from the beginning but they had to observe me for two years before they would diagnose it as MS. They go by the MCDonald Criteria. You can clique on the health pages at the top right. There you can get a better explanation. You might be diagnosed with Clinically Isolated Syndrome. It is complicated however. Did they do blood work to rule out other diseases?

Alex

[alfiesgorge]

Well.................it was me that told him it was MS.  I asked him about my spinal fluid I said...what have you found, I cant remember the word, but I recognised it through looking up whilst wait for my results, I said...that's MS that isn't it. He began to waffle on and say I cant diagnose MS with just one attack, you VEP test is clear so it means this is your first attack, if you get any more symptoms go back to your DR and get her to phone me and we can go from there.

[figuerpa]

Medical Mystery....hmmm this is the second post I have read that the doctors say it is a medical mystery...have you went for a second opinion or asked about MS. I only had 1 O band and some lesions and got dx'd with MS but insurance won't approve meds until I have more lesions so we are waiting.

I am not saying you ahve MS I am just wondering if you asked about it. Doctors don't like to just say MS until they have ruled out all other mimicks so maybe that is what they are trying to do. Have you been tested for anything else to rule things out?

Take Care,
Paula