Update from PCP
 

Good morning everyone,

Went to the doctor yesterday and made sure that she seen my spasticity her nurse had seen it too.. she was shocked for sure.

She couldn't believe that the doctors did nothing for me based on all my symptoms, I am getting worse each day.. there is no doubt about that.. my spasticity is spreading to other parts of my body.. my back.. hands.. and now I'm getting shocks in my thigh.

I probably should go to the ER but I'm stubborn as I know what this entails.. you just get tired of explaining yourself all the time and nobody believing you.

So she has booked an appointment with a neuro which won't be for a couple of months, at least she's on my side.

That's great that she saw what you experience and is on your side. It always helps to have a dr like that on board. Did she give you anything for the spasms?

What Trish said!

It's good that she "saw"- but did she help? Anything? I do understand that her seeing and believing and commiserating is a help in itself. But that doesn't help in the middle of the night. Any medication additions or changes?

Best to you,
ANN

No she thought it was odd that I was on baclofen she said it was a muscle relaxer.. so she said to just continue.. if it doesn't improve I'm going to the ER.

for drs it seems they have to see with their own eyes to believe you.
the fact that she didn't do anything for you is not awe inspiring.

get a copy of her dictation. then, at least if you see another dr you'll have some proof of your problem. i'd start calling and keep calling the neuro. ask if they have any cancellations and maybe you can get in sooner.

does she think you can just hang for 2 months?????? urrrrr

misshayleesmom,

I see that you are from Ontario...much the same nonsense goes on here in B.C. with specialists. There are long waits to get in to see a specialist (sometimes over a year), and then when you finally get in to see them, it can mean more waiting to get tests done, then more waiting to get to see the specialist again to get the results and treatment.

I go between my MS neuro and my PCP, because I often can't see or even speak to the neuro for months.

After I told my PCP "I really need your help, because I can not see my neuro often enough to have continuous care, or get help from him when I need it", he woke right up and became more interested in helping me.
We're trying different medications now to get some symptom relief.

You might try going back to your PCP and telling him something along those lines.

I've said it before, the Canadian medical system isn't all that it is cracked up to be...:(

With love, Erika

I couldn't agree with you more Erika, I'm giving it a week to see if the Baclofen helps then I will be calling for sure.

Last summer I moved from Barrie Ontario (45 minutes north of Toronto) to back home in Windsor Ontario and the medical care is the same..totally frustrating.. timing sucks!
My son comes home from the military on Friday, he doesn't know I have re-lapsed.. I don't want him to worry since he has finals.. and he needs to do well on them.

I hope I don't have to go the steroid route again but my options are slim.

My calves are screaming... I can barely walk.. they are so tight..

misshayleesmom,

I'm so sorry that you are going through this. Just curious...how much Baclofen are you taking?

With love, Erika

I'm only taking 10mg 2x/day they make me groggy.

For sure they can do that, but I found that after a while of taking it on a regular basis (after around a month), that the grogginess subsided somewhat.

I usually take around 10-20 mg before bed and sometimes that much in the morning as well, especially when I am going through a rough patch.

When my spasticity is really bad, I have taken extra doses to get it under control. I take an extra 20 mg and then add 10 mg every hour or so, up to 60 mg/within a few hours; even though I know that I will be sedated, dizzy and that my body will be weak from taking that much.
It is a trade off at times like that. Less spastic cramping, means less pain, but then the day is shot in regards to doing anything.

How long have you been taking it?

LDN helped to take the edge off of my pain and improved cognition as well as muscle fatigue (Thanks Sally :winky:).

Some people find that some antidepressants also help with pain, so you might ask your PCP about that too.

With love, Erika