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I'm hunting for anyone to give me advice on where to go for more help. I am declining faster than I?d like to admit. Dr.s say besides dysautonomia, POTS, MVPS, premenoupause, intermittent neurogenic bladder they think I have some degenerative autonomic disorder. My BP goes up instead of down upon standing. My pons and cerebellum in my brain have minimally begun to shrink according to my MRI comparisons. I have a catheter because of urine flushing episodes which do horrible things to my body. I have less symptoms by keeping my bladder completely empty by catheter. I am now with hospice because of my rapid decline. They put me on oxygen to help with endurance and it has helped. I often have slowed or slurred speech. My movements are sometimes slowed or shaky. Other times my speech is normal and while laying or sitting I appear almost normal. I am mostly house bound. I have a w/c and can minimally use a walker on a good day. I have begun this weekend having diaphragm spasms that constrict my breathing. I have begun having swallowing issues (like choking on my own saliva?how gross [and scary]!) in the last few weeks. Mayo clinic in MN has denied me once and we are considering reapplying. Local Dr.s don?t know what else to do with me but to prepare me for the worst. I feel like I have death sentence. Anyone have any words of wisdom?

I love Dr. Moore. I am from Phenix City, AL. She is wonderful: understanding, knowledgale, sympathetic... The whole staff is awesome. My problem is that my problems have exceeded her expertise. In fact UAB Hospital in Birmingham said they have even exhausted their expertise for me and I am hunting any other facility that may be able to help me.

I am on Klonopin and Effexor XR. I was put on Effexor to help with my POTS. It really helped me. I am on a tiny amout still. I am very med sensitive. I had to start on 1/2 of a 37.5. I've had to go up slowly -- just a little every few weeks. 37.5 was enough for me for months. I am taking 45 mgs now. No side effects. I love it.

I know what your'e talking about! I wish someone could find that imaginary button that gets pushed to make us feel so bad all of a sudden. I think one of my most frustrating symptoms is the unpredictability of all this mess. I seem ok for a few hours or a few days and and then wham. I flat on my back. Haven't been able to work in 2 years. Had my disability phone interview today. Too sick to even go to the office and sit up long enough to apply. Last week I went to an appointment and almost passed out in my wheel chair. My husband laid me down on the waiting room floor. What a life! I try not to complain but just telling the facts is depressing sometimes.

Thanks everyone for the info! It is nice to hear that I'm not the only one on earth with a catheter or this problem. Sometimes I feel so all alone. I am gradually getting better. In fact this is the fastest I've ever recovered from an episode this serious or this long. I am walking thru the house now, can feed and bathe myself now with out complete and utter exhaustion. I think keeping my bladder empty with this catheter has really helped! Crazy as that sounds. Went to my cardiologist yesterday. I love her-she is so good. She did say though, that more than likely there is another diagnosis that will link all my other symptoms and diagnosis's together now that this bladder retention has come up. She says I need to see a autonomic neurologist to find out what is going on. She does only dysautonomia and mitral valve prolapse at her office. I am, by far, off the charts for her usual patient. I appreciate her honesty with me. She said I don't neatly fit into any box of diagnosis and thus the referral to yet another specialist. sunfish, I'd like to talk to you more since you seem to have the closest symptoms to mine. I am new at this Forum thing. How do I do that? Just thru this forum issue like this? Just glad to be feeling a little better than I was and not so all alone, Teresa

Have had 3 bladder infections in the last 14 months. No typical infection symptoms. For me, convulsions and almost passing out spells (slurred speech, can't walk straight, weak to the point I can't feed myself after convulsions) is how I know I have an infection. I got my last bladder infection 3 weeks ago. As a fluke, 2 weeks ago an ER doc cathed me and got 1050 ccs of urine out of my bladder and said that obviously my recent convulsions were due to bladder retention and probably automonic (due to my dysautonomia). He said 1050 ccs was like being 4 1/2 months pregnant. 2 days later after convulsions began again, the uro. office pulled 750 ccs out of my bladder shortly after I used the bathroom. New theory now is that my convulsions are from urinary retention and not infections. My cardiologist's nurse says that it is probably not just autonomic--there must be something else going on. I will have the catheter till my cystoscope on June 5. Anyone else have this problem and is it related to dysautonomia? I never had a bladder infection in my life till I got sick 1 1/2 years ago. I've never been the same since.

I get slowed, slurred speech and off balance before I have an almost passing out spell. Sometimes I get 'loopy'--like not all there mentally. I feel high. Nothing bothers me. I get a little goofy and laugh inappropriately. It can happen real fast or go on for 45 min. If I lay down it goes away quicker. If I stay on my feet the process is very quick and I'm on the gound if someone doesn't help me get to the couch. If I'm sitting it can take longer to get to the real bad stage of going completely limp. My Dr. said maybe it's my lungs not doing what they need to to get O2 to my brain (part of my dysautonomia). Also have POTS. Haven't read about anyone else having these symptoms. I'm new at this. Really enjoy the web site.

Even before dx w/ dysautonomia and POTS I wondered about toxicity. I felt at times like I had waves of toxicity rushing thru my body. Even had heavy metals testing--all negative. I still am not stable yet--in the process of trying meds for treatment.

I am a newbe to this whole POTS thing. Just been diagnosed a month ago but have suffered from it for a year and a half with Dr.s shrugging their shoulders at me. Infections put me in bed for a long time and it takes months to get back on my feet. At times I used a walker and wheel chair. I still use a w/c if I go out anywhere like shopoping. I have bad crashes that last days, sometimes with no reasons. I also have good days and bad days. The main thing that has helped me is wearing a pedometer. Wal-Mart has them for $3.-$6. I have to wear mine in the back to be more accurate. I write my mileage down every day. I have been able to tell that I tend to crash more often on days I walk farther or after several days of increased activity. I use it to regulate my activity so I can gradually work up my activity or to prevent crashes that come from overdueing. Periods make me real tired and tearful sometimes. Hormone therapy helped me alot. I'm on boi-identical hormones (estrogen, progesteron, and testosteron). I know they've made a huge difference for me. I switched hormones right before I was diagnosed with POTS and dysautonomia in a desperate attempt to find anything to help myself. That was a no-no. Now I'm back to 3 days in bed during my period. It will level out again. My body doesn't handle changes well. I won't switch hormones again. Bioidenticals don't have the same side effects or dangers as synthetic hormones.

Me too. Was just diagnosed this month with dysautonomia. Didn't know to ask if it was POTS, but after coming home and researching I have many sympt. of it. I have that sleep problem too. I thought I was going crazy. I was ok with it till I convinced myself that there must be some reason I couldn't sleep. Got introspective. Worried, knowing how yucky I'd feel in the morning after getting a few less hrs of sleep. That all happened after that creapy crawly lack of sleep feeling prevaded my body. Then the tears followed. I don't feel so crazy now. I never in my life have had probl. sleeping till the last year.

I have recently been diagnosed with dysautonomia but didn't even know enough about it to ask the Dr. what kind. I have a mixure of many symptoms that don't fit neatly into one category. I am unbalanced alot. More so when tired or sick or recovering from infection (which takes me months). I have been thru all the nuero testing and although have symptoms of myastenia gravis all testing was neg. I had to go thru PT to walk again it was so bad. That's when we realized my whole right side was weaker. MRI was fine. I get shakey too. Too many other symptoms also to mention here.