LimboLander...again
 

(I just posted this post on 'Brain Talk' - even creating a new name, as I couldn't sign in to this one. Then after a day thinking, "where's all those familiar names/people?" I discovered I was on the WRONG WEB SITE!!! :D)

So here I am on the site I intended it for.....
Back after a year or so...

I have no dx, I have had symptoms for just over 2 years on and off. I had a really good last 14 months, but in the last 2 weeks my old sx have come back badly again, (left side heaviness, tingles, nerve pain) and now I've got new ones. (dizzy, loss of balance when I turn or move my head.)

Of course my question for the last 2 years is "is it MS or not?".

I saw my GP last week who said I'd better go back to the neuro for another MRI. (She ruled out a stroke and ear problems)

My other 2 MRI's were clear 2 years ago, so the neuro kind of nicely sent me on my way as she couldn't come up with a dx of anything. VER also clear. No spinal tap done. All bloods clear. Stress perhaps?

I don't have eye problems though?

Shouldn't any lesions have shown up when I have the first MRI 2 years ago?

Seeing the neuro on Tuesday. As this is a second flare up of sx's, does it hold greater 'weight'?

Any honest thoughts would be appreciated!

My concern is if it is MS, and I don't get a dx, I can't start on meds?

Heya hun :hug: limbo period is dreadful. While I truly hope it's not MS, you do need answers to whatever is going on neurologically!

I bolded your point about eye problems... I've never had Optic Neuritis. I've had blurry vision, but eye specialist said my optic nerve and eyes look to be in fantastic shape.

Eye problems don't have to 'exist' as a symptom in MS, though O.N. (Optic Neuritis) is a very common symptom.

My diagnosis was based on positive MRI (done with contrast), lumbar puncture, and 2 'hallmark' MS symptoms - L'Hermittes and girdle-band 'sensation'.

I hope the new neurologist you see can give you some answers.

Hi

One of the things that specialists look at is neurological symptoms over time, and even if you didn't have a positive MRI the first time, you should still get checked out. There are other things they can look at, like evoked potentials and oligoclonal bands in a lumbar puncture.

I think (and this is in Australia, I don't know about where you are) they need to demonstrate evidence of two attacks, separated by a period of time.

Get it checked out, and I hope you get the answers you need.

Take care

Lyn

its took years and years for my MS to unfold and reveal itself as MS. SCary stuff! YEars of migraines, years of stumbles, burning feet, forgetfulness so bad I forgot where the O2 was on my ambulance, and years of MD after MD telling me they really couldnt see any real reason for my suffering. made me feel like a drug seeking whiner. Like I was a weakling who just couldnt deal with a normal body, doing normal things. Fast forward 5 years and a new state, with new MDs who said "well, I think you have MS" and they worked hard to prove or disprove it. LEsions, and optic neuritis equal MS. Also saw a shadow on my 5 y/o MRI that was declared a glioma! How come no one wanted to talk about that?!

So, yeah, the waiting game stinks! Have you been to an MS center? There are more than 100 diseases that can mimic MS including the lesions, so its no wonder its not an easy dx to get. From lyme to lupus to vit stuff, and sjoghrens and RA and so forth. its a dizzy lump of tangled messes that the MDs need to sort thru before they can find what fits you best. There is no blood test that says "MS" on it. Its a guessing game. if you are unhappy with your current crew, fire them and get better guessers. :hug:

Waiting is the hardest part. My suggestion is to keep a log of all your symptoms. Even the very mildest ones. Maybe just keep a daily log of how you feel each day. Doesn't have to be too detailed unless you're having obvious trouble with numbness, balance or vision. Believe me....when you're trying to remember everything and when it happened this diary will become invaluable.

Has your Neuro done any blood tests? Tested for Lyme or Lupus? So many other ailments can mimic MS. It's just am elimination game. And it can seem to take forever....especially when you're the one waiting for the answer.

Hang in there. :hug:

Thanks for your replies and support.
Lynn, I'm in Aust too.
Kitty, yes I've had lots of bloods done over the last 2 years. The neuro I saw is a good one, but I guess back then with a clear brain & spine MRI, AND a clear VER, she didn't have much to go by?

At my first appt with her she said she suspected demyelination due to family history and sx.(my aunt has MS and my sister with 'maybe-we're not sure it's MS' dx.)

She's a good MS specialist, and was better than the other 2 dismissive neuro's I saw.

At my last appt with her she said she'd be happy if I got a second opinion, and to come back for another MRI. I never did get that MRI, and that was due in Jan last year.

I guess I've found my way back to NeuroTalk because I'm a bit scared of what's ahead.

If I get a dx of MS at this point in my life, I have wonderful support around me now compared to 2 years ago, so I'm in a better 'place' to deal with it, if that's the case.

Welcome back home Free..:hug: