blackwolf

I'm glad you finally got your records. And that you are home safe. As to the EBV, mine has been "elevated" since April of 1999. My second bout of it. Most Doc's say it isn't that important. Your guess is as good as mine. No idea on the %NE, mabey check the internet? Blackwolf

Interesting input, thanks all. I guess I never ran very long either, just enough to keep my gym teacher happy, then I would walk. I didn't really like aerobics very much. But i did stuff in the weight room better than most "jocks". Go figure. OOPS, running on again. Thanks All Blackwolf

I had a Doc ask me if I had any trouble exercising as a child or growing up. It got me to thinking, Why? I never liked to run, but could. I would however, prefer to take a rotation in the weight room. Does any one now why they might ask this? Mostly just curious. The only exercising I so now iis light weights and swimming. To cold for that right now, here in South Dakota the HIGHS are upper 60's and low 70's. I can't say I don't like it, in fact it's perfect. But it is August, it should be upper 80's low 90's. Our corn looks down right yucky. Woops rambling again. Blackwolf

I found trial and error best for me. What the Doc reconmended was nowhere what I really use, I've gone higher for best results. Best of luck, Blackwolf

Congrats! We felt a lot better after ours came thru. Good Luck and be strong. Blackwolf

Just a note, if you can find it, try dry ice. it lasts a lot longer. Good Luck and God Bless! Blackwolf

Dear Susan, Hi! I am just starting a "down cycle" as I call it, all of my symptoms are just about out of control. I reciently started a new drug(theophylline) and I know I should be worse off by now, so I hope the new drug is helping. the new drug is for asmtha, but my Cardio said it was a better drug than the Norpace(made my feel yucky). I'm still on 150mgs but I feel a lot better than normal for "dowm time". Mostly just dizzy and painful( I also have Fibromyalgia/Chronic fatigue). Sometimes my heart beat bounces form slow to fast(35-140) but it doesn't pound thru my skull. I hope you can find the help you need, remember we are here to talk to. Blackwolf

I have to be very careful about what kind of anesthesia I get. The hospital here in town has a combo of drugs I can take. Once I also nearly died because of a mixup in Doctor orders, luckly, the Doc caught it before I completely crashed. If you can, talk to the An. Doc themselves, not your surgon, they don't always take the same precautions. Blackwolf

Welcome, I have basicly the same story, just a few years longer to dx. The only big help I can offer is "good Luck" with your tests and meds. Trial and error, sometimes a lot or error, is what some go thru, others get lucky and find what they need quickly. Best wishes, Blackwolf

Dear Roy, don't feel so bad. We didn't file for bankrupsy but we lost our house, one car, horses and cattle and many friends when we were forced to move to another town. I agree with the others, if your symptoms aren't calming down, file for SSDI or what ever help you can get. It is a lot of work, but in the end it is worth it. Search out your state Advocacy group and they can help, try the Vocational Rehab group to. Good luck, Balckwolf

I suggest a lawyer. It seems nasty, but by law they can't withhold your records. It is a federal offence. If a lawyer is completely out of the question, contact your states Advocacy Group, need help finding them, contact job service and/or vocational rehab. I had this trouble with one Doc in Iowa, one letter from our state Advocacy group and I had everthing I needed. Don't be aafraid to be aggressive about it, they are your records. Just a note, the "delay" could be editing records. After my lawer got copies, we found many "changes" where being made to what my new Doc got. Mostly, many small comments had been edited, a little extra work on my part found a lot of "she needs a shrink type stuff". Good luck, Blackwolf

I'm not really sure, which came first the chicken or the egg. On March 8th, 2000, I had my tonsils out(cronicly swollen from mono a year before). On the 27th of that same month I had a terrible bout of "virul phlerusy(SP?)" Two weeks of the worst pain I've ever had, most of it was in the hospital on morphin and oxygen. Two weeks after recovering from that my other symptoms started. It seemed to "snowball" from there to here. Blackwolf

I don't drive either, haven't for about 2 1/2 years. In South Dakota, we need 12 months and a letter form your Doc to return. I see no chance for me for quit a while. Good luck, Blackwolf

Ditto, I run about 96.5 give or take. I was on thyriod meds for about a year, didn't get the same effect. Go figure. Blackwolf

I guess you need to do what's best for you. I personally can't see how a pacemaker can effect syncope? unless your heart almost stops when you stand up. Blackwolf

Katherine, I have this once in a while, but more so I have the "creepy crawlies". When I do have the prickly/itching stuff I like to take a just cool bath. It quickly gets rid of it for me. I don't know what you were on, but I had similar stuff when I quit the beta-blocker I was on and switched to another. Hope it goes away. Blackwolf

When all my trouble started, my mom had asked the Cardio if a pace maker would help me. He said that was the worst thing to do. The heart isn't what is causing the trouble, it is the signal coming from the brain that is goofed up. Just thought you might like to here a different Doc's opinon. Blackwolf

I often have numbness in my legs, esp. the left side. When I wake up in the morning, it is the worst. My cardio believes this is the POTS and really has no treatment. I think I've just gotten used to it. I also have weakness in the same place. Good luck, Blackwolf

Blackwolf aka Jennifer Eppe 33yrs old OH poss POTS, Fibro/cfs, mild depression OH at 29, fibro at 17 Sioux Falls SD Lightheaded, fainting, dizzyness, chronic pain, fatigue, trouble sleeping, irregular heartbeat, palps, low Bp, foggy, balance trouble, muscle weakness, muscle tremors and spasms, shortness of breath most chronic pain meds(ie mobic, celabrix, etc), estragen(all but natural forms), what I take now: proamatine 5 mgs every 2 to 4 hours, toprol 50mgs once daily, theophylline 150mg(just started this, real energy boost and helps with the palps and shortness of breath)

Welcome Friday, I have been suffering form Fibro for nearly 10 years. I was Dx'ed with OH(orthostatic hypotension) in May of 2001. Just in the last few weeks has my Cardio made the admittence that it may be POTS. I also have breating trouble. I know now that even in high school I had trouble running that something was up then. I had a lot of pain at that time, but it wasn't until after my son was born that I was Dx'ed with fibro. In March of 2001 I had a terrible bout with first viral pluersy(sp?) and then a blood infection that effected my brain for about 2 weeks, I don't remember much, but I do know that about 2 weeks later I couldn't move around the house without blacking out as much as 15 to 20 times a day. After 2 weeks of that, I was sent for my first tilt table test(TTT). And boom, OH! As to your numbness, been there, done that. I wake up always with numbness, and I know I don't "lay funny" I only sleep upright on my back. A good hunk of you symptoms sound just like mine. Nausea, brain"fog", weakness and most the others are a daily, weekly, etc. type thing. I agree with the others, start with the TTT and go from there. Good Luck Blackwolf

Dear Sue, I thought it was a little weird at first, but my cardio Doc suggested the same things. I've taken it so far as designing quilts for my mom and sister. I even do crotchet afghans. I sell them once a year at the flea market with my mom, every spring when it is still cool. I even started helping my budding writer/artist daughter make homemade books for pressents for family. They love the gifts. Blackwolf

Sounds good Mighty Mouse, I hope everything works out for you. Just an idea, I have my own copies of most of my Docs reports, as well as many summeries from one time visits, like my trip to Mayo. I run off my own copies and can edit out multiples of info from more than one Doc(ie. scripts, dxs, reports filed with my Gp, etc.) Blackwolf

Dear Morgan, I know just how you feel. I've been told by some Docs to "learn to live with it" or "you need to see a specialist(ie. a shrink)" that I just about gave up. I'm glad I didn't. I have found a smart and somewhat knowledgeable Doc. It took a lot of work. You never when or where you might find that just right Doc. Good Luck, Blackwolf

I have been on a BB for just about a year. I also had some trouble at the begining, but after about 3 weeks they went away. I would suggest mabey a different BB. As you may have noticed, we all seem to react differently to drugs. Some can't handle anything while others can take only low doses yet others need very high doses. Most here take only very little BBs, I take 50mg daily. Everyone is different. If you really want to talk to your DOC that is your best bet. Good Luck, Blackwolf

Don't ever give up. Try looking for your local State Advacacy group. They specialize in helping you get assistance in all fields no matter what your health problem are. NEVER be afraid to ask for help. There are many groups out there to help you. Contact your state congress or senate rep and ask for help. They know most of the state and federal groups. We don't need so much help now, but we still recieve rent assistance and can apply for heating/ electric assistance. And don't let some lawer tell you you can't get help. Another great place to go is your local Vocational Rehab. The can help to do just about anything, if they can't they usually know where to go. We waited 2 1/2 years to get our SSDI. NEVER GIVE UP. Keep a positive outlook. Good Luck, Blackwolf