Have you ever looked at the website "WACMA"? It's World Arnold Chiari Malformation. There's a lot of good info on that site and it also has a link for a really good support group. I used to belong to that group and it's really good.
I have not been doing good, but that's nothing out of the ordinary. Out of 7 days, I usually have 2 "o.k" days and 5 bad days. Thank you for thinking about me.
How are you doing? Have you gotten anymore info on the sarcoidosis ot the bone? I don't know what sarcoidosis is but I'm going to look it up. Do you dr.'s know that you have chiari?
I am on both Lyrica and neurontin and at one time did gain a good bit of weight even though I was decreasing the amount of calories significantly. But my metabolism was also changing due to age and decrease in activity. I also found out later that my body can no longer process carbs correctly.
So, who really knows if the meds caused the weight gain.View Thread
When I wanted to go to The Chiari Institute, I just emailed them. Give them your story and your phone number. They will probably call you back. They will want you to mail them any MRI's you have had.
One reason you can't get a dr. to get to the bottom of your pain is b/c most of them know that they don't know enough about chiari and are afraid of messing with it. I have had them actually tell me that.
What kind of treatment have you had for your chiari? Some patients get a lot of relief from surgery and then there are the others like me who do not.
Unfortunately I live in constant pain even though I take pain meds everyday. It is something that I have had to accept. I accept that my old life (pre chiari) is gone and that person is gone also and that my life will never be the same.
I hope and pray that is not your outcome. You really need to get some help for your chiari. Let me know how you're doing. Here is my personal email in case you want to talk to me there. firstname.lastname@example.org
BTW, most neurologist only know enough about chiari to be dangerous. They may think they know, but they don't.
Don't be down on yourself! You didn't ask for any of this-it happened to you!
I wonder if the dr. would be willing to retake the test. This is not the first time I have heard of the test being wrong. Usually it's the other way around though, showing drugs that shouldn't be there.
I don't understand why a dr. that knows you and has been your dr. for a long time would just automatically want to drop you. It's a very scary situation.
I also have the "hyper alert" thing and I also have pain in my leg joints. If you're going to be doing a lot of walking or going up stairs, I would not recommend going off the meds. You would probably not make it long.
Anyway, I hope you can get your dr. to understand or do another test. Keep us informed.
WOW...what we have to go through, right!? It's not like the pain & suffering we go through isn't enough....if some of these people could understand the amount of pain we are in, I think they would treat us better. I have found that some of the best dr's and surgeons' office's are the hardest to communicate with.
I'm sure that this has nothing to do with you personally. Their either just too busy or too lazy to return your call. Sometimes you have to be "not so nice" to get some assistance. But, then again, you don't want to burn any bridges either.
The last thing you need right now is to have to do all this calling & calling. So sorry to hear about all this trouble.
I hope you can get somewhere with it on Monday and get a surgery date soon!
I know when my pain is over the top for day after day, my nerves get bad too.
At least you can up your meds if you have to.
I absolutely do understand and empathize with you!