I have seen my cats do the smiley thing....never knew what that was. Thank goodness we have bath tubs and showers.

My son also does work with, electric guitars!

Does he do custom acoustic instruments?
Guitars? Banjos?
I've been looking for someone to build me a new
traditional, scooped, open-back, banjo neck.

Unintentional consequences of this disease...
 

As I look back over the past 5 or so years that I have really been battling this disease, I realize it has changed me in substantial ways.

At the most basic level, I take much better care of my body. Eliminating smoking is, of course, the biggie. But I eat very differently and watch like a hawk what I eat and where it comes from.

Portland is a big center for "locavores". We have a store chain (New Seasons if any of you are lucky enough to be in Portland some day) and all of their produce and meat is identified as to the source. The majority of their offerings are organic and I choose them, despite the slightly higher cost. And then there are the farmers' markets where you buy from the producers.

Vitamins. Supplements. Regular physical exercise.

PN may have given me pain which I must wrestle into submission nightly, but it also kicked my butt into taking much better care of this "temple" as it is called in the Bible.

Thanks for reading.

Cowboy

mere, it's weird that you mentioned the frequent urination. I just got on this site, while googling Dr. Khurana, and that is how I happened upon your original thread. But now as I continue to read some of your posts, it's seems like we have alot in common. Just over the past few days, I swear I think I peed about 5 times an hour! I was up all night. It comes out of no where. I also have the dreaded gastroporesis. I have figured out that it is worse when I exercise. I used to walk/run every day, but I had to stop. Dr. Rowe at Hopkins told me to try "Spanx" undergarments and they do help a little, but I still get the dreaded bloat. It's something with my low blood pressure and the blood pooling in my abdomen. My migraines have been a little better, but I am so damned foggy all the time. I feel like I am dizzy, without spinning, if that makes any sense. I see Dr. Khurana on the 22nd and I am counting down the days. I am hoping he can decipher this mess. The one thing I have found that helps a little is "clean eating". When I eat as basic as possible, no additives, preservatives, all natural, organic, etc., I feel a bit better. Certainly not great, but it does help. I also started vyvanse for my low blood pressure (switched from adderall) and to increase my energy and it has helped me to stay awake during the day w/o causing additional headaches. I, too, feel like I am going to die, but as others have said, I have lived like this for over 10 years. And, when people look at me, they always say the same thing, "but you don't look sick". Well, I guess I should be grateful that I look healthy, but it sucks to feel like crap every day. Let me know how your testing goes w/Khurana. I am anxious to hear. I hope you are feeling better.

And, when people look at me, they always say the same thing, "but you don't look sick". Well, I guess I should be grateful that I look healthy, but it sucks to feel like crap every day. Let me know how your testing goes w/Khurana. I am anxious to hear. I hope you are feeling better.[/QUOTE]

This is one of the best and worst aspects of having Neuropathy. You look fine, which when your not symptomatic is awesome. However, when your body is buzzing and shocking and stabbing, and people think your making it up, and that's when it infuriates you.

If you could only give some of that pain to the people around you who think your being weak or crazy, things would change real quick. Why???????.............because they would be on the floor crying like a baby because they have never experienced excruciating discomfort or pain like this. Then they would truly understand the agony and severity of this illness. I think there would be much needed recognition and quicker action if this were possible to do on a large scale.

Hi Tina, Yes, we do seem to have like symptoms. All a result of a wacky nervous system. I usually have this problem of excessive urination with a flare, but have also had urination problems where I have to go but I can't seem to get things going. I just sit there and wait. One way, or the other, it just sucks. I don't know when I will have the testing done. Dr. Khurana's office seems to have their system and they will call. He set an appointment in August to go over the results, so it will be done within the next month or so.

I have been sofa-bound since my flare. Looks like I will be here for a while. I am having trouble doing anything around the house... I am having trouble going up the stairs.

Tina, do the doctors know why you are having dysautonomia? Have you had a skin test for SFN?

Let us know how your appointment goes on the 22nd. I feel that Dr. Khurana is very thorough.

Hope you feel better,

Mere

No clue why I have dysautonomia. And, by all accounts, on paper I look pretty good! In the past 6 months I have seen a cardiologist, rheumatologist, dermatologist, dentist, primary care doctor, gastro, ob/gyn and surgeon! I have had a ton of tests done and the only thing that continues (for the past 10 years) to come back positive is my ANA and when I had my TTT test I was potsy. The rheumy wasn't concerned b/c I really don't have any symptoms of lupus or an autoimmune disease. Cardio - all fine, even my 30 day event monitor was negative. Dermatologist was for lichen planus in my mouth and like most of my strange symptoms they offered me no explanation of what caused it. I had a hysterectomy two years ago and my gallbladder out in December b/c the docs were convinced that was what was causing my severe bloating. Now I know better. But, I only have figured this out b/c I have done my homework. I have even considered taking out all my fillings to get rid of the mercury. I am fortunate that I have a very compassionate primary care doctor who is willing to try anything that I ask her. She also will email Dr. Rowe when needed. I spoke with him once in early January and he was, by far, the most informative physician when it comes to chronic fatigue and POTS/neurally mediated hypotention. I am scared, though, because as I get older it seems like my symptoms are getting worse. I keep thinking that someone will find out that my _______ is broken and they can fix it. I have a hard time believing that I will just need to live with this or medicate the symptoms. My thougths are for all of us suffering from autonomic disorders is that we have a virus or some time of infection or our bodies are toxic. I just wish I knew how to fix it! I hope you find the stregth to get off the sofa over the next few days. I don't think I would be able to move if it weren't for the vyvanse. I think it is the only reason I make it through the day. I only take a low dose and I just added a small amount of prozac (10 mg.) and that seems to help as well. I also take topamax at night for the migraines and either claritan or allegra for the itching. Yikes. I sound like a druggie.

Feel Better!!!

Tina

Tina, I can surely sympathize with your history. My problem started 17+ years ago with tachycardia, trouble breathing, etc. I was tested for everything under the sun (except PN). I was taken to emergency for tachycardia and they diagnosed me with a monoclonal (walking) pneumonia. When the tachycardia and other symptoms did not resolve, I was diagnosed with having anxiety attacks. I now note that I had a total hysterectomy about 3 months prior. Also had my galbladder removed in 1986. With both of the operations they found severe inflammation and scarring.

With time, I developed arthritis and autoimmune symptoms similar to lupus or RA. I am currently treated for arthritis (with Humira and low-dose prednisone- 3 mg) and fibromyalgia/chronic fatigue. I have had all positive pressure points for years. My labs show inflammation periodically, and immunoglobulomenia (?). I have only had a +ANA once and it was not strongly positive. Hence, they shrug their shoulders and treat the symptoms. Something going on but they cannot identify the antibodies.

I was hospitalized a year ago with severe stomach pain and was diagnosed with gastroparesis. I suffered a severe dysautonomic flare then and after my face, head, arm and hand were numb, painful and tingly. The doctors didn't really pay much attention to these symptoms (low BP, fever, severe itching, migraine, urinary problems) at the time. They were focused on the gastroparesis only. I was in severe pain then in my abdomen and required patient controlled anesthesia and then hydromorphone at home for a while. Too much pain for GP - I think the dysautonomia causes severe abdominal pain at times (just my experience over the years)...the Cat Scan was negative.

My feeling is that the viral pneumonia, stress, perhaps some genetics mixed in started this whole mess. Over the years, I have developed the SFN and that was recently diagnosed with a skin biopsy. The dysautonomia has changed somewhat in character over the years, but has not ever completely quieted. I now get the flares that make me feel like I described earlier in this thread. It makes me feel like I am dying, lasts for several days and takes weeks to months to recover from. I also get 'complicated' migraine with the flares. When not in a flare, I still have symptoms of flushing, GP, muscle fatigue, ringing in my ears, pain, blood pooling in my legs and abdomen and general 'unwellness'.

I don't know how this illness will further develop. I don't even know what is causing it. This is the ultimate frustration of many of us here. I am just hoping Dr. Khurana can help. I also have an appointment with Dr. Sumner at Hopkins next week. The appointment was made months ago by my neurologist, so I kept the appointment even though I am seeing Dr. Khurana because it is yet another opinion.

Mere