LisaColumbus

I am so sorry

I had the same trouble in the beginning when dealing with the Dis. Ins. company. I finally had the company send me the forms they needed the doctors to fill out. I then contacted the doctors with the forms, had them fill them out and send them back to ME. I then kept a copy for my records and sent a copy to the insurance company. I always try to keep a copy of all forms and records. Those copies came in very handy when filing for SSDI.

I get fluttering but not vibration.

I'm glad to hear life is looking up for you. I hope it all continues going in a positive direction

No, it started about 6 months ago. I'm going to ask the doctor about it later this month. I'll let you know what he says. I'm sure it has something to do with always blowing the veins in my feet.

That's all the blood pooling in your feet and legs. The hot water makes it pool all that much more. I have to sit in the shower because of that. While we are on the subject of leg/feet discoloration has anyone else had the color of their skin permanently change? My ankles have turned a very deep tan.

Are you currently taking Potassium? Any time I have taken Florinef I have also had to take Potassium. You may want to go to the doctor and have your Potassium level tested. I had to have my levels checked monthly.

Hi Dayna, I understand what you are going through. It has now been 11 months of feeling sick almost everyday. Every couple of months I will get one day where I feel almost like the old me. I am thankful for getting those days but it also makes the other days that much more difficult. Have you spoken with a therapist that specializes in chronic illness? I am in the process of trying to find one and am not having any luck.

Thanks, I am going to ask Dr Grubb when I see him later this month. I was just trying to narrow it down in the mean time. I have lots of off the wall symptoms going on right now and didn't want to throw too much craziness at him at one time

Hi all, I have been having severe pain in my knees, hips and right shoulder. The pain in my knees is what hurts the most. My knees get very stiff if I have them bent and when I stretch my legs it feels as if someone is trying to pry my kneecaps off. It hurts to the point that I come close to screaming. I tried googling to see what is could be but everything I found says there should be redness and swelling, I have neither, just the pain and stiffness. Does anyone have any idea what this could be?

Any alcohol at all has a very negative effect on me and it takes days to recover. It's amazing how everyone handles different substances in a different manner.

I feel your pain. I have spent the last year having to fight with my LTD Insurance (ML). If I may make a suggestion...I wouldn't tell the insurance company that they need to get the medical records from the doctors. If I were you, I would get the copies myself and send them myself, certified with return receipt. This way you can be sure that all the pertinent medical recordds are actually in your file. If you ever have to take them to court the Judge will only look at what records are in the file. You need to be sure that your file is as complete as possible. The next time you get a denial letter and need to appeal, I would ask for a complete copy of your file. It never hurts to know what info they are looking at to make their decisions.

Any type of pain pill that has caffeine in it will send me straight to the ER. I learned the hard way the first time I took Excedrin.

I have the same troubles. I can't even sit up at the dinner table for more than a few minutes. I am able to sit at the table if I am able to sit "Indian style- with my legs crossed" (I know that isn't PC but I couldn't think of another way to describe it-sorry) When I was still able to work I would have to sit with one leg bent underneath me. If I can't recline then I prefer to sit on the floor, with my legs pulled up in front of me and I HAVE to have something behind my back.

I emailed my info to you. Did you receive it?

That is great news. Congratulations!

Hi Dayna, I am very med sensitive also. Some doctors will be complete jerks about it and others understand and will start you off very slowly on new meds. Hang in there. I have decided that if the side effect of the med has be feeling just as bad or worse than not having the med, then I won't take it. No reason to keep filling my body with all this stuff that doesn't help. I had to stop taking the Topamax, the side effects were too much for me. Mestinon I can tolerate just fine, but as you said, it doesn't really help (It did help with some of my stomach issues) I have also found that I am hypersensitive to certain types of meds, I have no trouble with antibiotics but SSRI's will land me in the hospital with major neuro issues. Hopefully you have a patient and understanding doctor, if not, I would start looking for one.

No, I have never had any allergy testing done. I had no idea allergies could cause POTS symptoms. Hmmmm, another thing to discuss with Dr Grubb.

The only time I had that was when I was taking Midodrine.

Ever since I first became ill I will get an itchy rash at the center, top of my back where the neck joins. I can usually tell when I am getting ready to crash because the rash and itchiness get worse than normal. I also get alternating pain and numbness on the top vertebrae at the top of the spine base of the neck. Does anyone else have this?

Congrats! Please let us know when it is in print. I for one, would love to read it.

That's normal for me. I've had to quit wearing rings because of the blood pooling. Shaking my hands seems to help get the circulation flowing as does laying down. I only get the pooling if sitting or standing.

I received mine yesterday also. They look fantastic and are very informative! Thank you so much.

I had mine done in June. It hasn't changed any of the POTS symptoms at all other than I don't have the palpitations as severely or frequently. It doesn't seem (at least as of now) to have made things any worse.

I did read up on it. It is really scary stuff! I was hoping to find the past posts on the forum but didn't find anything when I searched Aspertame.