Any help ??

[bnlgirll]

Hey everyone I know I have posted stuff on here before. I am in critical need of someone that has any information or know of any great dr's that can help. I am really scared I am going downhill with the pain in my legs. Its so bad I think in the future I will not be able to walk. In a short 6 months my pain has gone from mild to severe. So I have what they can't tell me for sure is cholinergic neuropathy and peripheral neuropathy. No one can tell me why or how all this has happened. I'm 27 years old. They don't even know if thats what I have. I need someones help and I don't know who to go to or what to do..Please if anyone has any help it would be great. I'm starting to give up on finding out whats causing this.

[bnlgirll]

I am seeing a new Pain mangement Dr. that seems to give a damn so I hope he will give me some answers. As for the stimulators. I think my Dr. wouldn't put another device in me seeing how 2 pacemakers is alot for someone my age. Bit I am going to fight with him about getting my pain more under control. It sounds strange but the only time I's not in alot of pain is when I'm not on my feet. It makes it hard to exercise but I still do. Thanks for all the information any information is good.

[bnlgirll]

Thanks for the reply. I am currnetly fighting through everything and still working. It has been a major deal. If things continue the way they are I think I to will have to think about disability. I can't stand the thought of not working. But it's getting harder everyday. I hope they don't give me any problems getting on it. About 8 days ago I was stucked with the ability not to eat or drink. I was in the hospital for 4 days then released. Still I can't eat but I can drink. Lost 10 pounds in 8 days. I have a feeling either something happened to the gastric pacer or something eles has happened. I'm not sure I will keep you posted. Thanks again.

[898]

"In cases that are difficult to treat, a pain specialist may use invasive or implantable device therapies to effectively manage the pain. Electrical stimulation of the nerves involved in neuropathic pain generation may significantly control the pain symptoms;
Also, research is underway to find other possible pain treatments, such as:
· Methylcobalamin: a form of Vitamin B-12, commonly used with success in cats, is currently being studied. Methylcobalamin 	
· Methadone: There have been promising trial results for controlling severe neuropathic pain with methadone. It is currently used for chronic pain in the areas of palliative care, and for cancer pain. It's less sedating than other opioids, and relatively inexpensive to purchase. Methadone Studies"

[898]

It may not be relevant, but the pain after my back injury was a lot less when I was physically active [doing repair type work], then when I was in any steady position [sitting or standing].
The human body has a great reserve,so do not give up.
If I will be 2 times younger, you would be my role model.
Let me research on your condition as well as neuropathy as complication of diabetes.
"To strive,to seek, to find and not to yield!"[Alfred Lord Tennyson]

[halbashes]

I've had symptoms of severe Dysautonomia since I was thirteen years old.  I am now twenty-three, and on disability.  I had hoped to grow out of it by now, but still I am dealing with the symptoms as they come, with no perfectly working treatment.  Like you, this is not what I expected my life to be like at twenty-three, but I am happy to see that you are doing everything you can to overcome your illness.  I wish for you much happiness for the future.  Good luck.

[bnlgirll]

Thank you for the reply. I can tell you going through this has been rough. But I can tell you I will never give up. I will keep going to different dr's till someone wises up and figures this thing out. I just seen a Pain management/ anesth. He seems to be very interested. But of course I forgot my records. I am going to him in 2 weeks with everything I have. He had some suggestions and some different ideas. Like possibly seeing a Rheumatologists. He's on to something and I think he really wants to help make me comfortable at least. I can handle everything eles thats going on. But I can't handle the Pain in my legs and the falling asleep at the wheel even if I get 9 hours of sleep. I can promise you I will never give up. I will keep seeing dr after dr until this is figured out. Thanks again for the post.

[melipnyc]

Hi,
I just read your post, and my problems don't compare to yours at all.  I know what my family tells me- and they are in the medicine professionally themselves.  This advice doesn't apply to any hypochondriacs out there that may have stumbled on this post, LOL ;)  You have to be your own health advocate and keep pushing for answers, which you are doing by posting here as well.  Be tough, especially as a woman, and a young woman at that, sometimes doctors unintentionally minimize problems.  Do not give up on looking for solutions for yourself.  You need to keep looking for the right doctor, maybe someone not in your area of the country.  Good luck!  

[bnlgirll]

Thanks you so much for the reply. I will keep looking for the right doctor to put everything together. I just think theres one thing that caused everything.  My journey has just begun. My neurologist is giving up on trying to figure out what this is. So I don't really have a choice but to stop looking. But I won't stop fighting. Not yet anyway. Thanks again for your blessings to.

[salviagrace]

my heart just goes out to you.  i was around your age when my symptoms came on suddenly.  i remember thinking the same things- i never ever thought i would be here, and i would never ever wish this on anyone else. and i think primarily why is that there is so much confusion on how to deal with dr.s and how to treat the symptoms. also i think that not all of us fall into one category and have overlapping symptoms of other things.
   i just pray you have positive people around you!  blessings!  

[bnlgirll]

Hey again .. Thanks for following up with me. I do wish you the best luck at the Mayo clinic. Sounds like you are very similar to me. I really do pray that you get some answers. I know diagnosing dysautonomia syndromes are really difficult. I talked to my PCP and she suggested maybe I go to a dr in miami that is a neuro and also does anesthisiology as well to maybe get my pain more under control. My PCP also thinks I may never know what this is. Also agrees that testing be stopped for a while. I see my endocrinologist for the first time next month I guess I will see what she says. I'm closer and closer to think maybe I am close to going on disability. I'm 27 well 28 in 2 days. Never thought in my wildest dreams I would be at this point in my life and also would never wish it apon anyone. Please keep me informed and let me know how things go up there. I am interested to know if there any better than here. Thanks again for the reply. My thoughts will be with you... Jill    

[rhonda1017]

Hi Again,

    I just got a report from the US News stating the best hospitals in the USA and MAYO Clinic in Rochestor, MN is second for Neurology, Cardiology, Endocrinology, & Dysautonomia.  The number one Hospital in the USA is John Hopkins Hospital in Baltimore.  These are supposed to be the best hospitals for rare diseases and being able to help people recover.  So, you might want to try them out.  I'm going to MAYO in Rochestor.  They are number one in Neurology and Cardiology and that has more to do with the Dysautonomia.  SO, give it a try or wait until I come back and I  will let you know how it goes.  I know it's very frustrating when you keep getting weaker and weaker and able to do less and less.  I'm at the point myself and I'm just trying to hang until the appointment.  I'll be praying for you.  Good luck.
Rhonda

[bnlgirll]

Thank you so much for the reply. Any information is great. But the sad truth is... I'v been to the Mayo clinic here in florida. Thats when he thought I had cholinergic neuropathy. He couldn't tell me if thats really what I have. Couldn't tell me how I got it. Couldn't tell me nothing. It was a very disapointing visit. Maybe I need to find a different location. I just hope my legs can hold out in time to figure out what this is. Thank you so much again for the reply.

[rhonda1017]

Hi,
    I'm sorry, I've never heard of any of those diseases.  But, I do know that MAYO Clinic has a Dysautomia Lab and Research Facility.  You can go to their website and set up an appointment for yourself or see if your doctor will make a referral and get you in sooner.  It's worth a shot.  I've also been told that you can go to the MAYO Clinic and go through their ER system.  They will not turn you away and you might get in quicker.  Check it out, there are several different locations in the U.S.  I hope this helps.