This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi everyone,

I am a 25 yr old female, still don't have a diagnosis, and would really appreciate any advice anyone has to share.

Three years ago I had a bout of strange symptoms that lasted 4 months and then disappeared: electric shock like pains all over my body, muscle spasms (like my right hip locking up so that I would walk with a peg leg), vertigo, anxiety, heart palpitations, urinary problems, occasional slurred speech, forgetting common words, and a tendency to fall down stairs, run into things, drop small objects, and I even noticed that the vitamin supplements, which I had taken my whole life, I was suddenly having trouble swallowing. I was also having a lot of fatigue, which would sometimes come on very suddenly, with a lot of dizziness. All of these things that seemed so obvious and scary to me, were hardly observable by anyone else. My family and friends were relatively dismissive of all these problems and made me feel like I was being a hypochondriac. My GP is the one who suspected MS and ordered an MRI, which showed nothing. I was examined by two different neurologists, who after looking at the MRI results were convinced it wasn't MS. I was tested for Lyme, which was negative. The symptoms eventually went away on their own once the spring rolled around. Every fall/winter however, the stabbing, electric shock pains come back, without any of the other symptoms. This year I began to get the pains as usual, but also had a recent episode - I guess it was a muscle spasm? - in which both my wrists locked in bent position and I couldn't move them. This lasted only about 5 minutes, but was very scary. I had no wrist pain or problems previously or since then. I don't have carpel tunnel or anything like that.

I am very frustrated by all this, and just want to get some answers! I know MS is different for everyone, and I also know that it's difficult to diagnose early on and a neg MRI don't necessarily rule out MS. So I'm a little irritated with these doctors for telling me that I absolutely don't have MS. One neurologist, who I waited 3 months to see actually told me I was just depressed and it was all in my head, and suggested Prozac. I feel so dismissed and angry. Please help!!

You sound like me 5 months ago. I'm sorry your symptoms have landed you here and I hope for your sake it's not MS or anything more serious.

As you already know, it is possible to have MS and not have lesions show on the MRI. I'm assuming you had a brain MRI and I'd suggest you request a spinal one as well.

For me, once I found a neuro who actually listened and followed through, it was smooth sailing. If you're not comfortable with the two neuros you've already seen, find another. Google the hell out of him/her prior to making an appointment so you're sure you've found one with excellent reviews and possibly in a highly accredited facility.

I can't offer much advice as far as if I think you have MS or not. Some of the symptoms are common with MS and some aren't. But that's just how this wacky disease is. I'm a mess when it comes to heat and it sounds like your body freaks out on you when it's cold. We're all different in many ways but all linked with those 2 ugly letters, MS.

Where are you located? Maybe someone here is near you and can offer some advice on finding a good neuro.

_________________
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)

Cait,

As I understand, definitive results for an MS diagnosis can be made with a lumbar test of spinal fluid. If everything points to MS, maybe that can define it and the sooner you know & can be treated, if it is MS, the better

welcome to TIMS, cait,

In order to have MS 'diagnosed' there is a checklist called the macdonald criteria. mri is one part of it, plus a bunch of optional tests for things like l'hermitte's sign etc, visual evoked potentials, evoked potentials, lumbar puncture, etc. the basic criteria are here:
http://www.mult-sclerosis.org/DiagnosticCriteria.html

doctors should rule out b12 deficiency or other possible differential diagnoses.

the latest development in the world of ms is called CCSVI. this is very new. jugular veins of a number of diagnosed ms patients have been found to be malformed or blocked to various degrees (in some cases missing entirely)

it is possible that the impaired blood flow causes symptoms before it causes lesions that show up on MRI. it has long been acknowledged that lesions have little to do with symptoms.

early findings in ms patients with CCSVI show correlation between the location of blockage and the type of ms experienced.

what remains unknown is whether all jugular issues are basically birth defects, or not. and if not, how do these venous narrowings form? there are many questions that have yet to be answered.

never let anyone tell you these things are in your head. keeping a journal of symptom occurrence over time can help doctors and others get a bit of perspective on what you live with.

check out the CCSVI forum, and also watch the W5 video segment at
http://www.ctv.ca/servlet/ArticleNews/s ... ?s_name=W5

i'll warn you, if you don't already know, that the airing of the W5 episode has caused a s*!t storm of clamouring, freaking out a lot of neurologists world-wide.

many are not receptive, and centres who are aiming to start scanning and/or treating ms patients are swamped with inquiries. we are going to have to accept that it will take time for studies to be done and results to come through.

HTH,
jimmylegs