Dawg Tired

I am so sorry. I hate that we have to deal with so many self-righteous doctors that are SO clueless. Hope you soon find a doc that is more understanding.

Congratulations Linda - I know what a BIG relief that is! Finding a doctor that understands is a major accomplishment!

I, too, am glad that she is seeing doctors that are interested in actually doing something for her. It must be horribly frustrating to her to have her paralysis triggered so much - but I hope that in the long run they will be able to help. She has been through SO much. Love you Ernie!!

I had a PCP that treated me for asthma when this all started. One of my friends sent me to a pulmonologist and he is the one that ordered a TTT and found the problem. Maybe you need to go that route.

My pain seems to be very surfacy (is that a word?? Probably not! Oh well, y'all know what I mean!).

I also get the "pins and needles" pain on my scalp and it hurts to touch my head. But that isn't the only place I get it - it feels like a whopping case of heat rash/poison ivy. I get the same sensation on my left side - across my shoulder and down my left thigh. Sometimes it is so bad it is like a burning sensation.

Initially I was sent to a neurologist who was less understanding/knowledgeable than Karyn. When I got the office notes for my disability he said it was entirely psychosomatic. Thanks, Karyn!

The pain did get better when I was going to a massage therapist weekly but I can't afford that anymore.

Energy??? I think I have forgotten what that is. On the front end of this - in the days when I kept telling myself there couldn't possibly be anything wrong - I kept pushing myself. I was getting up every day at 4:30am to walk 2 miles. I had been told that exercise would give me energy. Then I went to work for 10-12 hours. Then 4 nights a week I went to school until 9pm. When I started having what was (to me) "unusual fatigue" I was told I had a virus and would be well in 10 days. That was 3 years ago. I worked myself to the point that I spent 3 months in bed. One of my friends had to come over and bathe me; my hubby had to take me to the bathroom and back. A tiny dose of Florineff made me gain 16 pounds in 4 days. A tiny dose of Proamatine sent my BP to 280/210. Then a pacemaker didn't help. I think that the only way we can even begin to be able to function is to get LOTS of rest.

Karyn, stick to your guns about the dictation template - as a former clinic nurse I was once getting ready to send patient records to Mayo when I decided to take a look at what I was sending. Good thing I did since the man we were sending with prostate cancer had a "normal appearing vagina and cervix"! Yeah, we got it corrected but how embarrasing would that have been to my doc to get a call about it?

Thanks for being here - the input from a neurologist is something we can all find value in.

As for myself, after spending a couple years and lots of money I am content with my current PCP who understands how medically exhausted I am from all of it. I have reached the point where I can sit up for a few hours a day to get on the internet; I can attend church most Sundays even if I have to lay down in the pew; and most days I have enough vision to read. On "good days" I can walk to the chicken pen and watch them scratch around - my son put me a chair down there so I can sit and put my feet up.

I use a cane also; but if I go to a store I use one of their electric carts. So that means I just don't get out much. My doctor, too, says I need to walk as much as possible - I don't think he has wrapped his mind around the fact that I'm doing good to transport myself all the way to the bathroom most days. And that's also interesting since he gave me a handicapped parking permit that states that I need an "assistive device"! Go figure!

If you are going to buy one yourself many places that carry the electric chairs and scooters have factory reconditioned ones available.

It sounds like a great idea. I have lost most of my fine motor skills now but I used to really enjoy knitting and crocheting.

Welcome back! I certainly hope the greenies go soon. I know how any setback seems to last us forever.

Vanderbilt seemed happy to get me for treatment when I had good insurance. But they set my appointment so far in advance that by the time it came around I had lost my LTD and as a result; my insurance. So I called them and told them of the problem; they took me as a research patient. Then, after 5 days of the "study" told me I didn't fit the criteria. So they put me in another study - the second study was for NMS - but I didn't have good enough veins for them to access so I was discharged on the spot.

But... they DID give me good documentation of the NMS and CFS and that helped my SSDI case tremendously. With the financial straits we were in at the time they were helpful as far as my husband got to stay in my room with me so we had no motel bills from that and they brought him meals when they brought mine.

So my experience was good and bad. I didn't get the answers I wanted, I was terribly drug out by the testing, and I got no treatment.

But I am not as far along with this whole thing as long as the majority of you. I got sick in 2002 and many of you have been battling this your whole life or at least most of it.

As a (former) nurse in an urgent care facility I remember a patient who was what we could call a frequent flier. She was in at least twice a week demending to have her heart cardioverted. She was always in perfect sinus rythm when we hooked her to a monitor so of course there was nothing we could do, and in any case we dealt with ear infections and such - not cardiac events and we could not have done a cardioversion no matter what. I guess one time in the distant (more than 10 years ago!) past she had a cardioversion - but didn't know why! It is patients such as this that hinder the rest of us. Poor lady needed a cardiologist but she said she had been to all of them in town; no one would help her and we were the nicest place she had been. What a terribly sad situation! She came in one time in a beaded dinner dress and stilleto heels on her way out on the town; like she was just going to "drop in for a cardioversion!" We speculated that maybe she was telling this to her friends and family as a ploy for sympathy... Who knows?? Unfortunately, with no testing in her background and her refusal to establish with a Dr that might have helped her there was no way we could help her.

But I don't think we tend to be frequent fliers... Unless, of course, we are dragged kicking and screaming due to the ill treatment we tend to get. The few times I have been dragged in - kicking AND screaming as I go - I have been treated as a nut case.

You are in my thoughts and prayers. I am so sorry about the difficult time you are facing. Your sons are fortunate to have such a loving and caring mother.

CONGRATULATIONS!!! I am so happy for you! Best of luck on your future studies.

If you call a children's hospital, such as St Judes; ask to talk to one of the social workers. They are a wonderful resource and a large hospital has some very knowledgeable people that can come up with programs the rest of us would have no idea about.

I, too am happy to see so many positive postings. I think this just shows there is no "one size fits all" solution. Everything else including my pacemaker has been a miserable failure.

Hubby and I have had a dream for many years of taking an Alaska cruise. We have a goal of doing that by the end of 2005. Good thing I have xanax... and phenergan...

I am convinced that without the Xanax I would have been more non functional than I have been for the past 5 years. I had heard all the horror stories and I would sometimes only use 30 of the .25 pills in a year. Then when I moved back to the Ozarks and went back to a doctor that had known the "old Gayla" (former Gayla??) he told me it might be a quality of life issue and to see if things would improve if I took it before things got really bad like I had been doing. He was right - imagine that! I still only use maybe 30 in 2 months but I have found it makes a tremendous difference.

When we met my hubby was the one with long-term health care issues due to a head injury. After we had been married a couple years and was the only financial support for the family I started getting sick. He had not applied for SSDI and refused to until I reached the point where I had to quit work. He has been very loving and understanding. Like Teri, he will remind me that I should take things easy and not overdo.

I was a nurse so I was understanding of his problems; maybe he has been so patient and understanding because he has walked a mile in my shoes. Then there is the fact that he is just a really sweet guy!

I have had the same problem. Bad Doctor sent me to a neurologist and I was told by Bad Neuro that it was all in my head. (Looks like I would have a REALLY big head by now with all the stuff that's supposedly in there!) But Good Doctor told me that it is all part of this - like skin pain. I have carefully cut ALL artificial sweetners - even Stevia - out of my diet and after a few weeks things improved. I still have flare-ups that last a few days but not as bad.

I have 3 years worth of journals. No one asked for them but the attorney told me they might need them; but my doctors did such a good job that I didn't need them.

Rachel, I also use the phenergan. I have it in the injectible vials, suppositories and pills. I very rarely use the injectible but my PCP doesn't want me to be stuck in ER with nobody taking me serious and not treating me. But the suppositories are invaluable on the "dry heave days". YUCK!

opus88, I told my PCP (at that time) my current PCP, 3 cardiologists, 2 psychiatrists and a neurologist. All but my current PCP have told me that I am "normal"!! Isn't THAT a hoot?!?!?! Luckily my current PCP (We had to move 1300 miles to get me back to a "real" doctor) knew the "old Gayla". At that time I was not on any meds except for my estrogen.

My PCP and EP (current) think this was all caused by the extreme bradycardia I would sometimes have - I was dropping into the 20's - not supplying enough oxygen to my brain. I can't say that my pacemaker has helped a lot though. Nowdays hubby knows to keep an eye on me. I feel like a kid that needs a keeper!!

Mmmm... Memory problems... I woke up about 5 one morning - REALLY needed to pee. Had NO IDEA where the bathroom was; WHERE I was; WHO was in bed with me. (Turned out to be Hubby!) I was SO scared! If I had been able to find clothes (good thing it was dark!) I would have got dressed and left the house. The whole thing was probably the most frightening 45 minutes in my life. I now know how/why people with amnesia get lost! (But I sure didn't want to wake up that strange man who was in bed with me!)

I quit driving after the 2nd time I got lost driving home from work. I would be driving then suddenly have no idea where I was - and I would be MILES away from any place near home or work!

The nausea sounds like what I go through. Every time I was pregnant I had severe nausea and it was pretty much the same.

SSDI - it took me two years, many denials and I had to go to a hearing but I got approved. One problem it sounds like you are having is a lack of a doctor. Who is your medical insurance through? I was working for a medical insurance company when I got sick and we carried many groups in Alaska. It takes a lot of medical documentation to get the SSDI and you will probably have to get a lawyer but KEEP PURSUING IT!!!! Don't give up or you will have to start over at a later time and it will cost you time and money!! I was approved at the end of October 2004. I had applied in Sept 2002. It took a year for an initial denial. KEEP TRYING! I think that the vast majority of us who apply and pursue it are successful. I don't think this is unique to POTS - my husband has a head injury due to a plane crash and he had just as much trouble getting it as I did. It's just the government...