Hi everyone, below is basically my intro post from the "newbie" area...I'm repeating it for context to my questions at the end. ...I'm so glad to have found this site!

I'm not really sure whether or not I belong in this forum, but I'm not sure where I belong...in terms of a health category.

I am currently under the care of a GP, an ophthamologist, and a neurologist. All have mentioned the possiblility of MS, but they don't have real "proof" of anything...and I'm not sure that much else has been ruled out, either. I've had two (relatively) clear MRIs in the past two years, but I have Babinski's sign in both feet, and a few other obvious signs and symptoms. I'm scheduled for two types of evoked potentials tests on July 13th, 2009. I hope that something helpful shows up.

...in order to share why I'm here, I've included (below) the general info that I used in order to introduce myself on the main "welcome" forum a couple of days ago:

I don't have a diagnosis yet, but have several symptoms that are neuropathic. In the fall of 2007 I developed double vision. I've also been having muscle twitches for more than 3 months now...every day, all day. I get sharp 'electric' type pain sometimes down a limb. Sometimes my feet go numb, sometimes my hands tingle. I have had a rash on my face for about 10 years now. I was told it was rosacea though. I have some hair loss too. There's more, but I think those are my main symptoms.

My mom has primary progressive multiple sclerosis. She is 56 years old and has lived in a nursing home for 10 years already. I have two aunts that were diagnosed with SLE (Lupus)...both on my dad's side of the family. One is struggling with lung problems mostly, and the younger aunt (58 years old) passed away due to Lupus in April 2009.

I don't know what I have, but it would be nice to find out. I'm hoping to learn from those on this forum...about their lives and the roads to (and beyond) their diagnosis.

I am interested to know what your initial symptoms were, and how long it took to get a diagnosis. What tests and procedures did you have? What had to be ruled out first? Does anyone have multiple health concerns that made the diagnosis more tricky? Sorry for all the questions...just wishing, hoping, and praying for some real answers.

Kind regards,

Jayne

Welcome to the club house Jayne. (thats my maiden name, spelled the same too!) I am sorry that you find the need to seek us out, but happy we are here to help.

There are more than 100 diseses that can mimic MS. A lot can be ruled out with simple blood tests, and others are more complicated. Many have been diagnosed without a single lesion, and a negative spinal tap. Others have had to wait till they are riddled with them. This disease is so frustrating. I am sorry to hear that your mother suffers from it too. I just wanna slap the crap out of this stupid disease.

I think you will find loads of nice folks to lean on, cry on, and cheerlead with here.

Pull up a chair.

Again, Welcome, Jayne. I don't know why we peeps here don't check out the newby thread more often..

Welcome from another Canuck!

Hello SaskMom and Welcome to Neurotalk! You will meet many great people here who i'm sure will try and help you if they can so feel free to answer any questions you may have!!

I'm sorry to hear about everything that you are going through right now! I understand how frustrating it is not to have a diagnosis so really feel for you...

I don't have MS but have a condition that is similar in many ways known as Complex Regional Pain Syndrome (CRPS/RSD). I have a lot of the symptoms that most people with MS have and was told by my Pain Management Doctor that CRPS and MS are very closely related. No one has done any tests to rule out MS in me, I really wish they would seeing as I have a lot of the symptoms but for some reason they wont.

My nanan had Progressive MS and passed away about 7 years ago when she was 56 years old (I was about 7 at the time). She developed RSD when she was about 38 and my mum was still a teenager though it took years for her to get diagnosed.

Her first symptom was blurred vision. She woke up one day and couldn't see hardly so went to see the GP who said she might have either MS or a brain tumour so sent her to the hospital. The hospital were useless and kept dismissing her symptoms until it got to the point where they could no longer ignore them. I think it took about 6 years for her to get diagnosed my mum said and my mum had to look through her medical notes to find out what was wrong ... apparently the drs had known for years that she had MS but refused to tell her.

As the others said, theres quite a few other conditions that can mimic MS so don't be afraid to ask for tests to rule out any other possibilites.

I really hope that you don't have MS and that whatever is wrong can be easily fixed! You are in my thoughts and prayers and please know that you are always welcome here !!!

Alison.

Welcome, Jayne.

I grew up in Saskatoon. I married an American from Kansas 25 years ago, so I live here now. But, I've retained my Canadian citizenship, and usually get back to visit family every year.

Initial symptoms, for me, were stroke-like. Woke up in the middle of the night, unable to move my left arm and left leg. Took 2-3 months of PT and OT to regain use. Was originally dx as a probable stroke.

But, when I had another flare, 3 months later, with different symptoms (extreme fatigue, fainting, loss of memory -- I don't remember April and May of 2002, manic thoughts and behavior), they knew that I hadn't had a stroke, and that it was something else neurologic going on.

Went to Mayo Clinic in Minnesota for about 2 weeks of testing, but even they could not dx me, at the time. Was finally dx with MS almost 2 years later. MS had always been considered as a possible option, but, for a long time doctors thought my symptoms (which are fairly atypical for MS) more closely resembled Central Nervous System Lupus.

Hope you get a quick dx.

~ Faith

Hi Jayne, another Canuck in BC here.

My first symptom was numbness that started in one foot, made it's way up to my chest, jumped over the the other foot, and that side went to slightly above my breast. That was in 1991, although I probably had less debilitating symptoms going back to the late 70's.

I had a LP to rule out mennigitis, etc., but the test was botched. I wouldn't let them give me a MRI or any other testing after that.

They told me it was likely to be MS ... and I ran for the hills. I never had another conversation with ANY doc about it until 2003. Then the same thing happened, only this time both sides were affected right off the bat. The numbness went to my almost my neck that time, so they new it was a new spinal lesion. I was very affected for a long time after that attack, and I couldn't work for a while. I was forced to get a MRI in order to be approved for STD.

There was really not much question about it being MS after 1991, although I went with the alternative possibility of a "virus that entered your central nervous system". Little did I know that that wasn't any more desirable of an outcome.

What did your MRI results say, ie. what is "relatively clear"? Did they do a lumbar puncture? Have you had the ANA (or whatever it's called) for lupus? Could the rash be from that (that is not a MS symptom, btw)?

Sounds like you have a good team of specialists on your side anyway.

Cherie

Welcome, Jayne! This is a great place for info, support, laughs, tears, and fun.
Sorry you're experiencing the frustration of not knowing what's up...been there.
I had fibro since 85, and began having neuro sxs in 04...finally was put on a DMD after sxs got in the way of living life...and lesions popped on MRI.
New neuro still won't definitively say MS, but MRI shows things that are "very typical" of the disease, so he's keeping me on the DMD, and working with me to control the symptoms without frying my brain, which my old neuro seemed to do with ease.
Good luck with finding out what's going on, and never give up!

Hello Jayne, and welcome to NeuroTalk!

I know how frustrating it can be trying to get a diagnosis. I've been living with MS for a long time, and the disease itself is very frustrating.

This is a great forum, along with The Stumble Inn. There are a great many caring, friendly, and helpful people here.

We're so glad you found us!