Just wanted to update this real quick:

Artist~ just heard from my PM Dr! I have to see him in the morning (last minute visit here!), so I will let you know how that goes, and if there is anything new that he tells me as far as treatment goes.

Loads of Love,
Vanessa XXXXXXX

Cry, Scream, Get Real Mad and remember you are not alone. There are never the right words for situations as this but knowing the path is lined with friendly hands will hopefully be a comfort to you.

One thing about RSDers, we are a tough lot! Hang in there!

:hug:

Vanessa,
Good luck with your dr. appt. I don't know if you do, but it helps me if I write down all my questions/concerns before I go, then I don't forget anything. Hope you get help/relief.
Linmarie
:)

Hi Vanessa,

Well, here's what I'm thinking (but I'm no doctor, LOL!) and I'm so glad you've got this appt coming up so soon.

They're treating you for RSD, seems to me pretty much comprehensively, you're taking something for all the manifestations; but it's only helping a little. Right? That may be the best that can be done, apart from juggling the meds, it seems really hard to get this thing under control. Hope it's not, though.

So, if they suspect MS as well, perhaps they should give you a course of treatment for MS. I've read a little (not much though) about it, and everyone seems to be saying that the earliest you are treated, the better - here's a link, there are many others if you google, but this is a good one - it says new research suggests one should be treated even before being diagnosed:
http://www.webmd.com/multiple-sclero...treatment-best

My main question for the doc would be: if you take the MS treatment meds (interferon-based, I think) and it turns out you *don't* have MS, will it do any harm to you? Now it might, which would knock this idea on the head instantly, but from what I've read I don't think it will. So if it wouldn't cause further damage, then I can't see any reason not to try it. I believe it makes you feel fluey to begin with, but that wears off. Anything that might help and won't worsen your present condition, whether it's RSD, MS or the Green Heebyjeebies, is worth a shot. If there would be added risks, then that's another story.

I have a host of conditions coexisting, none of them too severe yet (apart from those damn migraines), but I have to take a kind of "wholistic" approach - and by that, I mean that I have to treat either whatever is most troublesome at any given time, or my physical condition as a whole (which includes *all* my ailments) - a balancing act.

I imagine the MS forum here will probably be able to answer a lot of questions too, if you haven't already visited it.

Just a thought...worth discussing it with the doc?
Good luck with the appointment, tell the doc everything..if you don't see this till after your appt, and think this idea is worth looking into, call him.
:hug: :hug: all the best :)

Please share! How did your PM visit go?

HI Vanessa - some random tidbits...
Migraines: RSD causes migraines as arteries and veins get inflamed and cut down on oxygen to the brain...OW. Also these "migraines" can actually be vascular headaches that are signs the RSD has spread into your neck/head (I think you said that you have had facial & jaw symptoms before?) Also/or "migraines" can be a signal of nervous systailure of the sort seen in Parkinsons so Parkinsons meds can help (Nemanda again).
Movement disorders and service dogs: well, this is RSD - movement disorders are 1 of the 4 facets of RSD, just not the most common one. When I was researching about problems initiating movement after brain injuries/ strokes, I read an article about service dogs who are trained to help with this problem by putting a paw on top of the foot of the leg that is frozen. For some weird reason, this can get the stuck leg moving/walking again! (and according to other posts today, cat/dog slobber is therapeutic too :))
MS: I'm a bit dubious this is involved... it all sounds quite nastily RSD to me, but please please let us know what the new doc says!
Massage: amazing at reducing pain if movement disorder and muscle spasms are involved. Muscles are really strong, and when in spasm can knock your bones and joints and ligaments out, and ribs and everything, which generates more pain (Rosie's recent horror story!!!) Find a MT who knows myofascial, is familiar with fibromyalgia patients, and who will read up about RSD.
PT: use your muscles. Muscle wasting a big danger sweetheart - my friend was a national champion runner, but her right leg is now about as wide around as my wrist.
I wish I could wrap you up in a big hug. Don't give up honey. Hang on.

Thanks for your whole post, Molly! :hug:

Today I fell (from my legs shaking so bad that even though I was using my walker I toppled over) on top of my wrist (the walker handle pinned and crushed it, but definitely didn't break it-- and all my weight was on top of it!! :eek:), and I have a swollen, bruised and 10 times worse in pain arm! I also scraped quite a bit of my elbow down to the middle of my arm up and I nearly went to the ER because I thought it was bad enough... I have finally started getting my fingers moving a bit more, but it was so bad that I couldn't move my fingers all the way up to my elbow (though I have had that happen full body lock before, so half of me told me I'd get the movement back, but the other half said otherwise!)... I damaged my right arm and I am right handed, so I am not able to type/ use the mouse well now but will get a longer reply and answers to your questions/ comments when things are improving!! And talk about PM Dr appt..

Again, thanks to everyone and Molly- thanks so much!! I am doing all in my power to hang in there!

biggest gentlest outpouring of love and support
 

:grouphug:

Oh no, last thing you needed :( Big hugs, sweetie :hug:

Purely left handed typing is dreadfully slow, but I managed to write some up about the doctor visit, doing a few lines at a time here and there. :) Thanks for the hugs! My wrist is a little better... still hurting tons but the swelling is down somewhat, yay! But last night I tried to lean over the bed to grab a paper, and I got stuck head down, feet in the air, between my bookshelf and bed (so picture me being lifted out of that position- sure hurt!)... I am really hurting myself lately, and am blessed that I haven't broke anything... just in loads of pain from doing these stupid things! argh! :rolleyes: So things are going rough!!

On the MS:
Good thought, Artist... Though my doctor doesn't want to do anything yet until I see the rheumatologist, though (which is in less than 2 weeks). I *am* hoping that if this IS MS than the rheumatologist can spot that, if I give him my "list of symptoms"... guess we'll have to look through what is/ isn't the RSD (some things that are happening aren't necessarily in the "official list of symptoms of RSD", but I have heard of them happening in people with RSD), it is just so hard to tell!

Good find on the article. I learned quite a bit from it. The hearing thingy that keeps happening to me really feels MSish (ok not a real word, lol ;)), though I have heard of that, too, happening in RSDers.

I asked a question on the MS forum already, but will visit in more soon.

Molly- thanks for telling me about the headaches and all. I passed that info on to a friend of mine who has RSD and migraines too.

Ok, about the doctor visit... He wanted to see me because he needed to talk about all the medicines, he said that the passing out very well could be from the pain (it isn't something he hears everyday, but it is possible... different people have different pain tolerances, and RSD pain is the WORST form of chronic pain in the world, so...), and he said the muscle locking up thing is something to talk to the neurologist about as well as the passing out. So I really need to speed through time and get to my July neurologist appointment (which I guess isn't that far away) if I think about it! I think the neurologist is going to give me more help as far as what is happening, where the pain management doctor is trying to help with pain, not necessarily the movement/ passing out that he isn't real experienced in.

Blocks: next Wednesday I get my next one, and he (and I!!) hopes the block will last longer next time (but will discuss that with the doctor who does my block next week- maybe putting a longer lasting anesthetic in me), he said that he wants the block to last longer so that it can reset the nervous system like intended and it is hard to do that in only 2 hours, though that gives hope that blocks have/ will work!!

Molly (or anyone that knows about this)- I have trouble swallowing sometimes (almost like the food/ drink gets stuck in my throat half way down), do you think this is MS (read that somewhere) or could it be that my reflexes are messed up from the RSD?? :confused:

New thing that popped up is: I go to the bathroom and it takes a while for it to "happen", it is not that I feel I need to go and nothing comes out, it is just taking forever to go though I need to. Is this a muscle thing happening, something to my kidneys or what?! :confused:

Another question (will ask it here, but try starting a new thread so others will notice it): can you have a movement disorder that only affects you when you try to use your muscles (like walking)? Can you have one that affects you though your reflexes are fine? Doctors have yet to dx me with a movement disorder, because of my reflexes appearing fine. But yet, when I try to relax my muscles (like in bed) my legs/ arms/ body thrusts itself a bit... lil' confused on all of this because though I have researched lots on RSD I haven't read up on too much about movement disorders.

Thanks for all the support, hugs, prayers and help! Love you all! :grouphug: