BillC

I know that it has some big side effects from what the doctors described to me but have the results worth taking it.also any side effects? also I know that getting the dosage is sometimes I challenge they said ! I know they just finished a new study with a larger group I have read that it hasn't been press released I saw it a medical magazine I get for pharmacology i get migraines bad so I wondered do you get headaches from the drug or migraines ? I saw a few post on this but I Didnt know if it was the first trial Or from the newest release ! I am the type person I want to talk to the person that is using the drug for the same condition. Or as this drug has been used for stroke victims as well and Parkinson's so their results may be different. This where the site comes in handy to know it's not from a drug rep or a friend of one no offence to anyone meant ! Thanks everyone for helping I will be there for the next one to ( Pass It On )

I am working with a new team of neurologists in Indianapolis They have prescribed the drug NORTHERA. I would appreciate the help. Thank you Bill C

Sorry miss the thyroid yes I have had it tested I just had a new set of blood test done yesterday and included thyroid again I know some times they can get Bad results from any test so better to double check everything I feel like I gave a pint of blood but it's a fine one thing to help it's worth it from Reading in here I see a lot of people use endocrinologist to narrow down items thanks for the suggestion though

I get the same problem with the cold feet and even hands

That seems to be one of the biggest problems for me is making sure I stay at a constant temperature it seem like all I do is get to hot then to cold and so many cold sweats if I am out in the heat I always am drenched with sweat to the point I bring several shirts and always have a few towels I muesli drenched with sweat or in the cold I get the shakes that I can't stop I have had them for over a hour a few times it is so easy to take for granted how much our body does automatically

That was my first thing I did both item I used two different thermometers on oral and one a brand new certificatoryed dr type for the ear. I had an older ear but with temperature ranges I invested in the professional one the unit one model newer than what they use. I also have three blood pressure units I just bought a new certified unit with blue tooth to record event onto my iPad as well as a unit for iPad users and the old fashion type I used as a volunteer EMT but your right with those numbers I thought it was wrong as well but it wasn't. Thanks for the tip have a great day

Wow have not had it that high just usually low but I can jump up a degree or two if I am in a lot of hot weather but have not had that much time as you have in the hospital sounds like you have had a hard time but glad to see your still fighting the good fight have a great day

It's always low but 94.7 was a little freaked out but I lived ok now outher than to many doctors office visits thank for the info stay warm cold here burrrrr

Sounds like she covered all including the dhea in a form but not the catecholamine she is pretty good at covering most thinks I started on a lot of supplements and vitamins plus a strong dose of d so we had tested a wide array before but I wanted to make sure we hadn't missed something as well as making sure the past test wasn't done wrong I had a MRI done to cover the pituitary and thyroid to make sure I didn't have any tumours we added a few new tests this time just to find any rare outliers plus looking at a lot of the same test just to make sure nothing is changing thanks for the information I am trying to verify that we covered most possible causes I know we can't cover everything I don't have much to lose other than a pint of blood lol thanks for the reply sit looks like you cover a lot of the forums behave a great weekend

I am working with an endocrinologist running more blood test are there any you guys have run in preticuler I would appreciate the help Thank you Bill C

Thanks I normally run around 96 to 97 but recently I have trouble with heat and cold now but this is the first time I know of that it has been this low. I even tried two Different thermometers to make sure it wasn't a mistake. What next with this mess I fight the cold sweats all the time.

Hello any one run a low. Temp mine runs 94.7 right now I know that borders on hyperthermia but I still fell hot a get cold sweats. Any one have any problems with this.

Hello I am new here only a few months in but understand there is a lot of alone time with this disorder it limits you on doing a lot of normal things. I am here to chat most days so just say the word we need to remember we are still human and need to talk out things. We have more time than most people as we are limited in going out much. There seems to be a lot of great people on this site. We should start a time to just blow off steam.maybe even start a voice chat with an online app has anyone done that here yet.

I amazed at the collection of information on almost every one of life's situations. When I first signed up with this site I was preparing for my death I have already been donating my clothes and other personal items which I do not regret ( just gives me a reason to shop more ) but I digress after reading and chatting with people on this site I truly believe that I may have hope. I know some are saying that this sounds like I am faking the story but I assure you I am not. I really want everyone here to know how lucky I feel in finding this site. I still feel the problems of this condition and know that my life will be shortened by this but I feel lucky to have even another day. And hope to find away to have years I will travel to any part of the world if I could find relief from this. I also find great value in information on how people have found ways to do everyday tasks with this condition. I look forward to many more years on this site.

Has anyone ever tried mixing medications I am trying to get more mental alertness I am on OxyContin and oxycodone we know the effect that those two have. I have a new idea from anaesthesiologist to use methylphenidate, ( Ritalin ) has any one tried this blend. Any other combos that work better sorry Indiana is a no marijuana State.. I hope everyone doesn't mind I don't believe in reinventing the wheel if there is a good one that works it's hopeless help someone else as well

I would just like to start by thanking everyone That responded to my questions and even just the warm welcome. I own a company that's primary businesses is technology, so I can tell you I have seen tens of thousands of sites over the years . Yours is first rate and is your final defence was excellent making sure that I verify my condition to keep out spammers this is critical to having a site like this at this time period we live in preserving users information and securing that information from individuals that want to harm it or make fun of it. It takes a lot of work for the site administrators and Forum leaders they have a top notch site here it is easy to use and not cluttered no adds and it has very valid information. I personally have been able to find more information about my condition and the side-effects and symptoms than in any one place, and in plain language no geek speak. I can say that as I am a geek lol lol. This has gave me hope that I might have a chance to live longer ou made me a happy camper. I look forward to using this site to my last day here on earth . i have already sent this to a few of my doctor friends and they love it to so be proud not just the site but the group that goes forth and is willing to be brave an help we nubbys. So bless you all and thanks I hope to someday be a help, Thank you sincerely Bill C

Yes we are working with a team there as well they are the team that finally came up with the final diagnoses but the drugs they have prescribed a wide array of drugs most have not worked at one time I was on 17 different prescriptions some taken only to relive a symptom I have now on my own reduced that to 8 and feel better than when on all of the others. I have already felt more hope Due to the fact that so many on here have been able to live so much longer with this condition.

New here I have been diagnosed with degenerative autonomic nervous system disease. It started with a major spinal injury I had open thorasic surgery for the t7and t8 disk. I have also been diagnosed with degenerative disk disease, and require anouther surgery for a c4 disk. I was scheduled for surgery but it was cancelled because they do not believe that I could survive it with the dysautonomia I have been told by my Gp doctor that I could die any day or could live 6 months is there any one with some knolage that I could cat with any time tomorrow by chat cell land line email or by iChat I would pay to find a person to please catch me up on everything I feel so lost and I can't find a doctor in Indiana I have Seen 11 doctors in the last few years I live in the Midwest Indiana so heat is not to bad please contact me or email me thanks bill