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Hi all, I had the EMG on my left arm and neck this week. The physician said the good news was that my muscles and nerves are healthy/undamaged. He stated he thinks my ulnar nerve is irritated and recommended a cubital tunnel splint for sleeping and a padded thing (awkward!) for daytime/as needed use. Yay, more gadgets I think it is so interesting... I had just read a research article about similar issues in EDS patients (http://www.ncbi.nlm.nih.gov/pubmed/23743406)

Thanks to each of you who shared. I asked my primary for further clarification about why she would like me to do this and she stated that she wants to rule things out systematically. I believe it could be Raynaud's related, yes, or maybe some carpal tunnel/nerve entrapment type issue. I have never had an MRI. I have a curved spine. angelloz - what test detects small neuropathy? Also thanks for your empathy about the weight issue. It is so frustrating trying to balance weight maintenance with the grazing style eating my other symptoms seem to require.

Well, I don't have a POTS diagnosis... but I still have a few things... ~Eat a nice, big meal once and a while ~Dance with my toddlers every night like I used to ~Be able to socialize without having to excuse myself ~Go back to reviewing books, one of the hobbies I've dropped

Hi everyone, I know this test has popped up in past threads (I did a search), but I am just checking to see what the current collective wisdom of the forum thinks about the usefulness of this test for further info about either dysautonomia issues or EDS... My primary ordered one for my left arm (tingling, etc.), but I am getting wary - and weary - of test after test that shows nothing. I will, of course, make my own decision about this, but wanted to hear any stories or thoughts forum members might have regarding what this might show.

I am very interested in this topic. I am currently feeling quite well, having only eaten a few small things all day. But am utterly frustrated as I keep getting told that my low BMI is a problem. I discovered recently that many of my symptoms occur 1-2 hours after eating. I was already trying to eat small meals and do the high salt/fluid thing. (I have cut back on the fluids b/c that didn't seem to be helping.) So for the last couple weeks, I am pretty much only grazing. I am trying to follow a diet made for people with rapid gastric emptying and I think it is helping. But I am starting to slowly lose weight again :-( Discouraged. Guess I should add that I recently ordered a blood sugar monitor also to try to see what's going on there. My blood work for glucose levels was normal though last time.

Yes! The more I drink sometimes, the worse I feel - I'm quite rarely thirsty and drinking water especially makes me feel bleh. I have been confounded by this issue. If I drank anywhere near what I am supposed to, I would be in the bathroom all the time.

Hi Elizabeth, I am so happy for you! But also surprised... I tried this drug last year and had the opposite experience. It made me feel just awful! It is very interesting to hear how each person's body is so different. And it's kinda good to know that maybe my GP wasn't way off in suggesting this medication. Best wishes for continued improvement

Interesting question... On many days, people remark how good I look (including family). Just this week, however, I had a bad episode at work and several colleagues intervened based on how "bad" I looked. Mostly ashen/white and walking like a drunk apparently. Quite embarrassing.

Sounds like a really tough situation! I'm truly sorry to hear about your relationship struggles. I do think what you are feeling is normal. I find this journey to be very lonely at times and I even have some pretty good support, including my spouse. When my health mystery first started, however, we did have some misunderstandings and arguments. It was something we really had to talk through and we still work on it. It was extra hard on both of us, I think, because I was more of the motivator/leader/go-getter of our household and then all of a sudden I was struggling to get out of bed. And you're right... a hug now and again really helps.

I also experience frequent and intense salt cravings. I assume this is because my body needs it? Fritos and other such things are my are my friends!

Thanks! Wow, you have missed barely any time... especially considering all the illnesses going around this winter. That's suspicious. I bet you did keep it together, because I think those of us with these types of conditions, including the people are this forum, are incredibly strong and resilient. We are fighting silently all the time.

I've been following this thread, Bigskyfam, and I'm really sorry to hear about how you are/were treated. I really like rubytuesday's comments. So far my employer has been supportive, but I have not missed any work or anything major due to my health issues (yet). But I have seen these kinds of things too many times!

Regarding the Igenex issue, yes, I figure I can be quite sure I don't have Lyme since even that came up officially negative! I knew I might be spending the money only to be right back where I was, but honestly it was worth it to me because I had a known tick bite and it was always in the back of my mind. I just didn't want to spend the rest of my life wondering... looneymom - I have never heard of mycoplasma... I only saw this doctor once so far and I've been debating about whether to go back. I thought it would probably be a waste since he only specializes in Lyme, but perhaps I should consider a follow up to see if he has any other suggestions. I don't think I was tested for co-infections. Thank you for the ideas!

Thought I would write in a short update for those of you who offered so many helpful suggestions and conversation. I did finally have the Igenex Western Blot done and it was also officially negative! The nurse who called with the result said I had a "few markers" and that I could follow up with the doctor if I was still experiencing symptoms. I'm not sure what to do there since this doctor was a Lyme specialist pretty much exclusively. I'm not sure what he could do for me. It was interesting, though, that when I met with him he said I reminded him most of all of a "POTS person" and he also commented on how much my joints were cracking and popping. I am relieved to have put the Lyme question to rest (I guess) but one always feels that little tinge of disappointment when a possible cause for all this mess is ruled out. I have continued to struggle to restart my exercise routine, but am managing food and fluids as best I can. What I find maddening is the unpredictability of this condition... feeling pretty good one minute, lying on the floor in a pre-syncope state the next. I'm starting to consider asking my GP for help finding a specialist who might consider testing for EDS, but I'm never sure how to approach specific questions like that without getting labeled a hypochondriac! I have fallen arches, a deviated septum and scoliosis since childhood, slow healing, easily marked skin, constantly popping/grinding joints with pain (but they don't go 'out of joint') and I have always sweated very little - plus all the dysautonomia stuff of course.

Thanks for the replies. Today is day 2 of my 30 day event monitor. Whew, it's going to be a long month with this gadget hanging off me! And it's impossible to hide at work. Ah well, the fun continues!

I like Emma, would appreciate any insight into this issue! I struggle with becoming hot, extremely weak and shaky at random times and quickly getting a snack or drink is the only thing that helps. Very hard to predict when appetite is all over the map. It seems like a classic blood sugar issue but I was told my fasting glucose blood was normal also. Wonder how much hormones play into this? Has anyone done the glucose tolerance test where you have to drink that sugary stuff all at once?

Eating really slowly and/or frequently (grazing) has really helped. I also stopped trying to force myself to eat on the traditional 3 meal per day schedule. Always having food or snacks available is important. And drinking Gatorade in between meals also sometimes helps me.

Not slow, maybe it's palpitations. My monitor has registered me as irregular all day today and though I know it's not a super reliable one, I can feel it, which is why I've been checking.

I didn't know your daughter was also on Trazadone, JuneFlower. That was the first med I was given for insomnia and it turned out to be a terrible choice. It caused lots of problems for me including heart arrhythmia and now I am not allowed to take it! I think that drug is not a good one for some people with autonomic issues. But my primary prescribed it before the dysautonomia dx.

It's a day of irregular HR and/or racing issues. Also feel very shaky plus the typical headache. Too bad I am not wearing the 30 day monitor now that I am scheduled to start next week! Murphy's law I guess... Wondering if you all find these particular symptoms are triggered by something specific? Dehydration, hormones, other?

Wonderful news! I also was told that I was digesting muscle last fall and that was pretty scary... so glad you have found professionals that can help your daughter. I wouldn't feel funny taking my child to a specialist if she had this diagnosis.

Really helpful to read all of your replies. I knew I would learn things. I had mine with me at work the other day when I was feeling really poorly, so I took a 'bathroom' break to try to get a reading. But all I got were various error messages. Very frustrating. So I guess what Chaos said was extra relevant to me. Do you think the wrist models are accurate for getting HR? In other words, is it the blood pressure that is the most problematic?

I'm interested in this idea, too. I also live in the northeast, buried under close to 2 feet of snow now. Since I have some Raynaud's issues, the intense cold is trying. I also have allergies so the weather seems to mess with that, too.

I'm sure other members will be much more helpful on this, but I have one of the cheap wrist monitors. I have mixed feelings about using it, since I find that the numbers often don't reflect what I think they will based on what I'm feeling. I am using it to do some poor man's ttts in the morning just to try to get an idea where I'm at (I do not have a POTS diagnosis, just autonomic dysfunction.)

Very interesting, xRobin, I also typically do much better with eating at night. JuneFlower, my primary tried to suggest an eating disorder with me and nutritional counseling. In my heart, I knew that wasn't true, but after a while it started messing with my mind, erode my confidence. Snacking when I feel the least bit hungry has really helped.