[misshayleesmom]

HI everyone,

I just got back from the ER, the Dr. seen my spasticity an asked me why I haven't been dx yet.. that is the million $ question.

My body didn't let me down, I had a tonne of spasticity which he documented.. and my hands turned blue while I was there.. he tried to massage my foot.. he asked me if my feet turn inward and on cue it did..

So he prescribed flexural, and is getting me an appt and neuro asap.
No steroids.. he said normal wait time for a neuro is about 1 yr when a family dr refers it..

He said to call them back next week if they haven't called me.

[Kitty]

Well, you got the ball rolling. At least the doctor saw your symptoms in action.

I hope you can get in to see a Neuro sooner than a year. That seems a ridiculous amount of time to have to wait. What on earth do they consider an emergency?

[misshayleesmom]

Originally Posted by Kitty

Well, you got the ball rolling. At least the doctor saw your symptoms in action.

I hope you can get in to see a Neuro sooner than a year. That seems a ridiculous amount of time to have to wait. What on earth do they consider an emergency?

Thanks Kitty,

The problem is by the time I get an appt, get an MRI nothing ever shows up.. I think its too much time in between.. nothing is active.

My reflexes were unbelievable, none on my left side but my right leg was very exaggerated.. he asked me if my feet fan out and on cue they did.. they also turned in too.. my hands also turned blue in the office.. at least everything is documented.. so we'll see what happens next.

[Kitty]

I'm glad you got it documented.

If you have the capability maybe take a video of your symptoms at their worst or at least some pictures of your hands when they turn blue. A picture is worth a thousand words.

I hope you feel better and are able to tolerate these symptoms until you can see a Neuro. Don't these doctors realize that people are desperate by the time they finally get to have an appt?

[misshayleesmom]

Originally Posted by Kitty

I'm glad you got it documented.

If you have the capability maybe take a video of your symptoms at their worst or at least some pictures of your hands when they turn blue. A picture is worth a thousand words.

I hope you feel better and are able to tolerate these symptoms until you can see a Neuro. Don't these doctors realize that people are desperate by the time they finally get to have an appt?

Thanks,

That's a great idea, I 'll do that.

[ANNagain]

I am glad you got seen, MHM. I hope the Flexeril helps and that you get seen by the neuro very soon.

ANN

[Snoopy]

Hi misshayleesmom, nice to see you back here.

my hands turned blue while I was there

The above quote caught my attention.

Raynaud's can cause hands/fingers and/or feet/toes to turn blue/red/white.

Information about Raynaud's Phenomenon:
http://www.cedars-sinai.edu/Patients...henomenon.aspx

[mrsD]

I'd make sure you have electrolytes checked. Calcium derangements can cause this severe cramping...called tetany.

Low Vit D levels, lead to low calcium. Also low magnesium will do this.

There can be a tumor on the parathyroid glands, and this will cause severe spasms too. Tapping the side of the face... near the ear will cause spasms on that side of the face when calcium levels are too low.

http://en.wikipedia.org/wiki/Chvostek_sign
images:
https://www.google.com/search?q=chvo...iw=981&bih=662

http://www.bmj.com/content/336/7656/1298

[Erika]

misshayleesmom,

Argh...this is where the Canadian medical system really sucks. The wait for specialist appointments is a round a year here too. If you have to wait that long, at least try to get your PCP to refer you to an MS Clinic neuro, if there is one in Ontario. I waited for about a year to first see mine, but he is the head of the MS Clinic in B.C. The draw back is that he is super busy, is interested and involved in research and hasn't shown a great deal of interest in my situation since he determined that I am now SPMS.

When I first saw him though, it was because the body went into a relapse and didn't go into remission. He ordered all sorts of tests and evaluations to exclude secondary diseases or MS similars. That all took another year to complete and get back in to see him again. But at least I got some answers. I honestly don't think that I would have gotten that from a regular neuro...and I've seen quite a few over the years.

Also, depending on your financial situation, your PCP can write a request for an MRI that can then be done in a private clinic. The wait is usually under a week and the cost for a brain MRI is around $ 800.00.
Here's the listings for the ones in Ontario:

Ontario MRI Clinics for Private MRI Scans in Ontario
http://www.findprivateclinics.ca/Ont...-9-0-82-0.html

Raynaud's is a distinct possibility for your hands turning blue but it might be worth having a check on general circulatory system stuff as well. Have you had an ECG and blood work done?

Also, I'm a bit surprised that the doctor prescribed Flexeril. It really isn't recommended for chronic spasticity and is more often used for spasms due to acute conditions like post surgery and injury. It might help with a differential diagnosis though, because it does nothing for neurogenic spasticity, which is what causes most of the spasms in MS and other neuro-immune disorders. Baclofen is the most common drug used for MS spasticity.
Thus it will be interesting to see if Flexeril has an effect on the spasms that you are experiencing.

Flexeril is a sedative-type drug, so be careful and watchful for dizziness, in-coordination and weakness; especially in the first few days that you are taking it.

Here's some info from a pharmacy data base for prescribing practitioners:

FLEXERIL should be used only for short periods (up to two or three weeks) because adequate evidence of effectiveness for more prolonged use is not available and because muscle spasm associated with acute, painful musculo-skeletal conditions is generally of short duration and specific therapy for longer periods is seldom warranted.

FLEXERIL has not been found effective in the treatment of spasticity associated with cerebral or spinal cord disease, or in children with cerebral palsy.


With love, Erika

[Lynn]

Good Lord!!!!

12 Months?????

Sorry, but that is soooo long! There are some people in Australia that complain about our health system, but from what I read on here, it is awesomely good. There is no way that you would wait more than three months for an appointment where I live - and that is in rural/remote Australia.

With the documented urgency that your case demands, it is ridiculous that you are forced to wait so long.

The video idea was excellent - by the time you get there, your body (if it is anything like mine) may well not perform for you the way you want it to (as in the way it has been all of the rest of the time when you aren't seeing a doctor).

I hope that you are on a cancellation list, and that your ER doc has written a really good referral for you.

Sorry that you are going through all of this, but at least it has been seen first-hand by a professional now.

Good luck, and hope that the meds will give you some relief.