janiedelite

For me, a beta blocker did help with the adrenaline surges. I was diagnosed with erythromelalgia as well as pernio (chronic frostbite). However, I met someone with true EM and my extremities don't stay red once I elevate them like hers did. Mayo, Rochester, ended up diagnosing me with small fiber neuropathy as the cause of my blood vessel dysfunction (vasomotor neuropathy). They ran tons of tests for all of the underlying causes of neuropathy like diabetes, cryoglobulinemia, amyloidosis, autoimmune, etc. It was very comforting when none of the scary stuff came back positive, although I almost wished that it had because then I may have been able to treat the underlying cause successfully. Do you have a good neurologist who is familiar with treating erythromelalgia? I was a part of an EM forum for a while and it seemed that many of those folks ended up being diagnosed with small fiber neuropathy. If you found a neurologist in your area who was familiar with treating/diagnosing neuropathy, he could maybe check for underlying causes of neuropathy. My local docs were able to do a lot of that before I went to Mayo (Mayo just re-ran all of their tests and did testing that my local docs weren't capable of doing). I wasn't able to tolerate the one SSRI I tried (Paxil). I was on it for 3 months and by the end I was having severe flushing, burning skin, and other intolerable side effects.

Provigil was $8 a pill for me to try. I ended up just buying one pill, to try it out. While it worked, I had more chest pain and tightness and jitteriness. I crashed hard 8 hours after taking it.

If I can control my POTS symptoms as much as possible, I notice I have less problem with peripheral vasoconstriction. For me, compression hose actually reduced the pernio I suffer from. Also, lots of salt and fluids. Of course I also have Smartwool and Acorn socks (sometimes 3 pairs over my hose). When my feet are freezing, going for a walk helps get circulation back in. I can't warm my feet too quickly (ie in hot water or a heating pad) or I get chilblains. But sometimes I tuck them under one of my sleeping, large dogs for some nice warmth!

I have problems with both constriction and dilation, such as pernio, high BP on standing, etc.

Wear layers in case the room is cool or too warm. Bring some entertainment (a good book, your ipod, etc). You will be there for a couple hours!

Woohoo! That's great!

When I became ill with POTS, I was working 12 hour nursing shifts plus nights occasionally and going for 3 to 5 mile walks on my days off.

The mono virus is also implicated in lots of post-viral POTS cases (Mayo said it's what caused mine). There are blood tests that can check for mono. Mono resides in the lymph system and causes swollen nodes

Definitely try to get off all of your meds prior to the test. That may be difficult, especially to wean off of your lexapro. But it's best to be off of long-acting meds like that for a good 3 days before testing. Mayo wanted me off all meds that work on my heart or nervous system for 3 days prior. I'm wondering if you could just skip your midodrine the day of the TTT, since it's so short-acting?

Yay RubyTuesday! I'm so glad that you are having positive results!

I'm sure there are others who can give you more info about SFN, but here is my experience. The small nerve fibers control sweating (sudomotor) and blood vessel constriction (vasomotor). As far as I know, the skin punch biopsy is the best way to detect demyelination of the small nerve fibers. You can have either vasomotor OR sudomotor dysfunction (I sweat fine but have vasomotor problems). I was told that I have small fiber neuropathy after a qualitative sensory test at Mayo, but my sweat test and QSART test were normal.

I've been reading more about amine-free diets. Pork is actually high in histamine and perhaps triggered your reaction.

I registered on the phone prior to getting the IV. My mom gets infusions too, but at a different clinic. Each place was nice with recliners, drinks, and nurses who are used to starting IV's. Bring a book or something to entertain yourself. I did have a TV but didn't want to turn it up very loud.

http://forums.dinet.org/index.php?/topic/17301-our-jobs/page__p__158219__hl__career__fromsearch__1#entry158219 Was this the thread you were thinking of Tennille? I was an RN for 7 years, then I suffered a hip injury as a result of a car accident, had 2 surgeries and over 100 PT visits (still going), came down with POTS and small fiber neuropathy within a couple of years after the car accident. I do think that my nursing experience equipped me to investigate my symptoms and know how to converse with my doctors. It helped me know how to explain my symptoms, and after dealing with doctors at my job for years I learned that, yes, they are fallible but some would be willing to try anything to help me.

I never had to see a social security doctor either. But I had several years of documents recording appointments with over a dozen specialists, abnormal testing including 2 weeks at Mayo, over a hundred physical therapy visits, etc. The judge at my hearing said that most folks try to get disability after maybe seeing one or two doctors. She said that just attending all of the appointments I'd had over the last 3 years would preclude me from doing any type of job. She said that going to a prestigious research center like Mayo (or Vanderbilt) was also helpful in validating my illness. She had no problem pronouncing me as disabled based on the volume of testimony in the doctor's records. I also sent in to the judge a symptom diary that I'd kept for the 3 years, professional journal articles defining POTS/OI and how it affects disability, and I sent in a diary of all of the medical appointments/phone calls with doctors that I'd had over the 3 years prior to the hearing.

My primary care doctor told me to be careful taking phenergan long-term because it can cause tardive dyskinesia (uncontrolled movements). Domperidone was really helpful for my nausea, but for some reason it dropped my BP. Mack'sMom's son uses small doses of erythromycin for his motility issues and it really works for him.

A warm bath, some benadryl, and listening to audiobooks on my MP3 is what helps me (keeps my mind from racing).

It seems that perhaps this nutritionist had no clue about your underlying disorder, and didn't know to acknowledge your body proportions. Just like doctors, it can take some looking around to find a nutritionist who can help with your specific situation. My mom has struggled with keeping weight on with her carcinoid syndrome, and had seen several nutritionists until she finally got some good advice from the nutritionist who works for her carcinoid specialist. Not all nutritionists are the same.

My mom struggles to maintain weight because of her carcinoid syndrome. She has taken to drinking tube feeding orally in between eating as much protein as possible (mostly chicken, eggs, and some fish or red meat). She can't tolerate ensure unfortunately. I'm sure with all of your hospitalizations, you've already seen a dietician. Can they give any suggestions for increasing your nutrition intake, especially through your liquids? Can you try anything like domperidone, which can help if you have problems with gastric emptying?

It sounds like after all that your body has put you through these past two months, that your hubby is really afraid of losing you. I've watched my husband and my dad (whose wife has carcinoid syndrome) struggle with feeling helpless as their spouses deal with complex diseases. Both guys admit that they would give ANYTHING to be able to "fix" us. Not being able to do so has put my dad in and out of depression. Before I'd been tested to rule out major underlying diseases, my husband would have dreams that I was going to die. When I'm not feeling well, he will give suggestions (drink more, salt more, rest more, etc) and I'll tell him I've done all of this. At hearing this, he used to get grumpy and ask "well, what do you want me to do then?" It has been the hardest thing in the world for him to see me when I'm really ill and just to sit with me through it and wait it out. And I've never dealt with the severity of illness that you have lately. I think that after watching me endure good and bad days over the last 5 years, he's learned to care for himself better. Usually it means he keeps himself busy watching TV or doing his doctoral homework so he can keep his mind off of not being able to fix me. My dad has friends, including my hubby, who he shares his feelings with occasionally. We've all been in counseling at various times as well. I think counseling is a great idea, and if you aren't able to attend with your hubby, perhaps you can attend via speaker phone occasionally? He's really had to endure a lot of loss lately. After watching my mom come out of remission for cancer, and then getting sick myself, I think that it can be actually more difficult for the patient's loved ones than it can be at times for the patient. The fear of the unknown can be overwhelming. Many times my hubby and dad have said they'd take our pain for us in a heartbeat. (But I laugh at that and tell my hubby that I know how bad he is at being a patient so no thanks! ) Hopefully your hubby can come up with some concrete ways to help himself cope better, and will start allowing himself to see outside of your illness (and his mom's situation) and take care of himself a bit.

I've had contrast numerous times and so has my mom (who has carcinoid) and my brother. None of us have ever had a reaction to it. However, the radiology personnel should have the necessary stuff nearby to treat you in case you do have a reaction. CT scans expose you to a high amount of radiation. If it were me, I wouldn't want to endure all of that radiation unless I knew the doctors had the best chance of viewing anything abnormal. This is a good conversation to have with your doctor.

I think this has been brought up before, but it's good to keep in mind that the population of dysautonomia patients who would regularly participate in a forum like this are most likely the more severely affected dysautonomia patients. There could be a larger group of more functional dysautonomia patients who would never feel that they had a need for the support provided on a forum like this.

If you want to pursue treatment for your illness, getting a diagnosis will help because those doctors who specialize in POTS/dysautonomia will be more likely to accept you as a patient. If you feel that you may become disabled due to this illness, getting a diagnosis is very important. You don't necessarily need a TTT to prove POTS, as you already have done the poor-man's tilt test. If your doctor is willing, he/she could do this in their office and document the results. However, it sounds like they may not know what to make of the results once they get them . Firewatcher has a good point that getting this type of diagnosis can make it difficult to get health or life insurance independently. If your doctor feels it would be safe, you could try non-pharmaceutical POTS/dysautonomia treatments like compression hosiery and increasing your blood volume with extra salt and fluids. Those things wouldn't require a diagnosis to prescribe them. Best wishes!

Here's a recent, lengthy thread on LDN: http://forums.dinet.org/index.php?/topic/18631-positive-clinical-trial-results-for-low-dose-naltrexone-in-the-treatment-of-autoimmune-disease/page__hl__naltrexone__fromsearch__1

FYI, my mom has carcinoid syndrome and her tumors have never showed up on an octreoscan because they metabolize the octreotide so quickly. CT scan of the pelvis, abdomen and chest is often useful for detecting neuroendocrine tumors, although the tumor density is different than other GI tumors and sometimes requires an expert eye, not just any radiologist.