So, anyway... I've been on the Parkinson's medication since Tuesday night, and today has been mostly spasm free. My pain levels have dropped significantly, since I'm no longer dislocating and subluxing every 2 seconds, and the side effects of taking the meds have started to wear off.
YAY!
In other news... On January 19th I had my appointment with my geneticist. He put in a request for an MRI to check for a Chiari malformation. He told me not to be surprised if there was a 6-8 month wait before I got it. I got a call today saying there had been a cancellation, and they can do the MRI on Monday!
YAY!
So I would guess within the next 3 weeks, I should have a diagnosis of some sort, and a lot more information under my belt (if all my test results make it to the people that need to see them, and I get called to discuss them, that is...).
This is my best friend's baby, snuggling up in one of the blankets I made for her. Isn't she precious?
5 comments:
Really pleased that the spasms and associated pain have abated. The efficacy of the med's sound good with even the side effects lessening - a bonus indeed. Good news.
I haven't heard at all of Parkinsons meds being used at all in the UK for EDS symptoms but I think some time ago there was some research the detail of which has left my brain I am afraid. To do with Parkinsons and some link with EDS. If I remember I'll let you know!
Here in the UK little notice is given to chiari and EDS. Which bothers me somewhat. I posted on it a little while ago I remember now.
So best wishes for future tests, it seems in the USA they break down many of the symptoms and treat appropriately. Here in the UK we just have to put up with it under the general umbrella of EDS.
The baby is beautiful. Simply beautiful. The photo says so much yet so wonderfully simple. A lucky baby indeed to have the luxury of a 'made with love' present, rather than a shop bought. It seems so long ago now that mine were babies!
Take care.
Hey, I've been getting Parkinson like symptoms for MONTHS, my neuro said it's because my body is so exhausted that it's trying to over compensate by sending out adrenaline surges... I've also read that parkinsonism (PD like symptoms) can be from dysautonomia... I'm waiting to to see my GP, and I see a more EDS knowledgeable Neuro in May, but I've often been wondering if levodopa may be of some help to me. The spasms are AWEFUL. I hit my head on the wall behind me one night after my back spasmed. Talk about dangerous!!! I hope the meds continue to help you!!!
Sorry for all the problems you are having. Where are you located that it takes that long for an MRI?
I run into problems with dislocations when K+ gets low and I cramp almost every where. Knees were the worst, but since they have been replaced it is mostly my fingers and right shoulder.
I live in Alberta, Canada, and though the health care here is FREE, it isn't necessarily GOOD. As it is, I'm more hopeful that my geneticist will look for a diagnosis for my spasms than my GP. He'll probably say "The Parkinson's meds treat your symptoms, isn't that enough?"
I'm trying not to drive myself crazy with the "what if's" as far as a diagnosis. It was very scary trying to deal with it, because I couldn't do anything. Everyone I work with must think it's not that bad, because ever since the first time it happened, I was cracking jokes. It's just the way I deal with stress...
Achelois,
My doctor frequently forgets/ignores the fact that I have EDS.
The link between Chiari and EDS was never brought up to me by a medical professional, I had to specifically request that they test me for it. Once I mentioned it though, my geneticist agreed it would be worth checking out.
We have the "EDS Umbrella" here too. If a doctor knows I have EDS, and I'm telling them about a different problem, they completely ignore the visible symptoms, brushing me off like I'm not worth their time.
Post a Comment