I can't seem to get enough sleep anymore. Somedays my joints hurt so bad I can hardly move and I am experiencing a terrible burning sensation around different joints when I move them. The most recent one is next to certain areas along my spine. My VWD is mild but this all worries me since it is happening more frequently.
If it’s neuropathy try lotion and myrrh
Are there any older guys with haemophilia that are experiencing chronic pain in both elbows. Right hand small finger has pins and needles feeling?
Tremeau Phamaceutical is currently enrolling patients for study of a new Cox2 inhibitor for pain. Google them to see if there is a study site near you.
Does anyone have chronic pain I have it in neck back hips knees and ankles already have had 1 total knee and 1 total hip replacement
I switched to an extended 1/2 life Factor VIII product for prophylaxis and that seemed to eliminate ankle microbleeds.
Yes. I have type 1 mild. I have had to have both ankles fused a total right knee and my elbow has had radio active isotopes injected in to it. I get them in my hands too.
I have von Willebrands disease. I really don’t know much about it. I was told its a relatively minor case but that’sall i know. I don’t know what to expect with this disease and have a lot of body pain and headaches. I’m not sure if any of this is from vwd or if it’smy other conditions.
I have been on Amicar most of my life and dealt with the side effects, but they seem to be affecting me more lately. I've had nausea and vomiting, and i get really dizzy and ligt headed to the point of fainting. The worst though is along with that, I get super overheated. Does anyone else have these side effects? It's gotten so bad I have even considered trying to switch to Lysteda in hopes it won't have the same effects. Anyone have experiences with switching?
NO ILL EFFECTS!!!
Last night my son got a few mussel spasms .... is this a concern? Is this a symptom of a brain bleed that might have been missed? My son is sever Hemophilia Type A
Get him to see doctor at Hemophilia Treatment Center.
Well this is a really long story but I am going to make it short. I have Blue Cross Blue Shield of NC they will not cover my Factor for me to have on hand witch is kinda a big deal. Because I am having to miss work to go get my infusion. They are wanting me to pay a stupid amount of money every month to have it at home at witch point I could buy a new Ford F150 every month lol. But does any one have any suggestions how not to get the run around with them or what I should do
Check with your local Hemophilia Chapter for help with insurance issues.
.Hi, My 17 yro. Severe A son, is determined to buy a motorcycle. He has written and explained a 3 page report to me and his dad the reasons why he should be allowed to get a motorcycle. To me, this just sounds like the craziest idea in the world.--No exceptions!---A no brainer. But trying to convince my son is a totally different argument
This would not happen right away, but probably within the next 6 to 8 mos
I am searching for help from the "older" more experienced people,-- who may… read more
I just joined this sight and I saw your post from over 2 years ago. Having had motorcycles since I was 10 made me curious of your outcome. I am Severe A also. Hope all is well. Glenn