Ms diagnosis?

[Jo1975]

Hi, I'm a 36 year old female that first started having issues around 8 years ago. I seen a neurologist who suggested an MRI to check for ms but as I was pregnant at the time it was delayed. All symptoms disappeared so the MRI never went ahead. Over the years iv had numerous episodes of different problems from tingling, numbness in different parts of the body and twitching in one eye.
About 4 months ago I got extreme pain in the calves of both legs that wouldn't relent no matter what. It has still not let up and just feels like my legs are about to explode. I now have stabbing pains in the soles of my feet aswell as burning sensations that just as quickly turn to ice cold feelings. I regularly get electric shock sensations in the ends of my fingers and toes and my eye twitches daily now.
Iv noticed my speach has started to also be slightly affected.
I went to a new neurologist who told me it is definatly isn't ms because ms doesn't cause pain!
He reluctantly agreed to give me an MRI which I had last week.
Everything was normal apart from 15 t2 hyperintense foci in both cerebal hemispheres.
The neurologist is still telling me it's not enough to diagnose ms but says that I don't tick the boxes for the other conditions that could cause lesions. Confused!! Anyone have any similar problems with diagnosis?

[Sidesteps]

Hi Jo --- I think I'd be getting a referral to an MS Specialist and a recommended research facility. I don't know where you live but I'd even be willing to drive a distance for it.

I was in limboland for about 1 1/2 years and saw 3 General Neuro's and 2 MS Specialists and 1 very brief consult with another claimed MS Specialist.These are my reasons and you can weigh them with regard to your level of comfort.

1) These facilities tend to have very knowledgeable and experienced staff and MS Specialists are general Neuro's as well so they can treat other issues if this happened to be another issue ... or refer you to someone who is specialized within that diagnosis.

2) I have found that in their attempts to rule out MS they are much more thorough (if they are a good one) than your average Neuro.

3) Absolutely NONE of the General Neuro's I saw did any labs - they were only interested in the MRI.

4) In ruling out MS with MS Specialists, they run tests that your average Neuro won't. I don't know about you but I was worried that it was something other than MS.

For a time, the MS Hug made me concerned I had a tumor in my abdomen and was having a heart attack. The headache, eye pain, vision symptoms and nausea made me worry I had a brain tumor. It was a relief when my MSologist finally did a LP and it ruled those out!

Hang in there... limboland is horrible...I am not crazy with Neuro's who aren't clear in their reasons for "wait and see" so I always recommend a 2nd opinion. You can still keep your current Neuro while seeking another opinion too - so I'd do that until you find the right fit for you - this is advised with cancer so why not with 15 brain lesions!! ;)

Did your Neuro have a cervical and spinal MRI done? It sounds like you have some spinal involvement as well.

[sllowe]

Yikes Jo!

Welcome to the forum. I don't necessarily think you need an MS neuro - I think you need a "Thorough" neuro.

Of course there is a cause to 15 t2 hyperintensities. These do not have to be caused by MS. But, a good neuro would look into what may have caused them.

Wishing you the best w/finding another neuro. Ask around w/fam and friends - word of mouth sometimes reveals keepers :)

[Jo1975]

Hi, thanks for the reply. He did do an exam, some of which I passed easily other parts not so. With the visual evoked eye response test they couldn't get a trace at all and he said I have next to no reflexs in my legs. I find it impossible to keep my balance also if I shut my eyes.
My main question is the lesions that showed on the MRI. I would of thought that them plus all the ongoing symptoms I have would warrant more than a come back in 6 months and try not to worry. I feel like I'm waiting in limbo and not getting anywhere. I have today started making calls to find another neurologist.

[Lulu54]

Hi Jo and welcome to the gang here.  I am scratching my head at this one.  First. Off you absolutely must find a Neuro who understands MS. It definitely does cause pain .... Neuropathic pain is very common. Just because he can't see pareason for your pain doesn't mean it isn't there.  Jeeeez.

Did this doc do a lcomplete neurological exam during your appt or just pat you on the head and shows you the door?


There a neuros who specialize in MS and I would suggest you see one of them for a thorough exam. If you Ned help finding one in your area let us know where you RA located.
Welcome again,
Lulu