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Disability, with Chronic Fatigue and Dementia plus Aids re-diagnosis
Jun 20, 2000

My question is this. In 95 I was granted disability due to having Hiv and my tcell count was like 560 or so and then viral load was not even thought of then. From then on and till now it goes up and down along with the present viral load of 14,000 I am getting so discouraged as now Social security is re-viewing my case and probably will deny me even though I have a history of paperwork saying I am "chronic fatigued" "Dementia" and Diarrhea which is now controlled with lopermide. I have had a hell of a time as my doctor is government VA and never has time to write down all the things I tell him and just says when I question it "We do not have to write that in every visit. Is this right? And also Dementia was written down several times by another dr in another hospital and it was because I can not concentrate or remember much and it is NOT the normal as he says it is. I forget people and even my way at times to places I know I should know. This is something that I have always had trouble with and it is getting worse. Also in another hospital in 1996 and Dr I was diagnosed with having "Aids" with a count of 196 which I know is boder line and the Doc said not matter how well I got I would "Always" be diagnosed with the "Aids" diagnose. My doc now however writes on all his reports "Hiv disease" So am I Aids or hiv disease? Also the fatigue is so bad at times that i have to lay down and take several naps during the day and pretty much stay in bed 14 to 18 hours a day sleeping or just plain resting as I am too tired to get around. I will feel good at times and then I will go to the store I am ready by the 10 min drive to there to go come back and go to bed. At times I am too damn tired to even to remember what I went there for or even have the ambition to get it.If it is written down I might be ok but if not forget it! I read back in my Journals and that is pretty much how I remember things when reading it. But ask me out on the street and stuff forget it! I also have known since 93 that the fact of having I call a one track ind and that is if I am doing something I forget everything else. I seem to can not do something and think about something else. meaning I will worry or stress out on something and someone will talk to me and I will not hear a word they are saying in the fact I hear them but can not remember them. my journals are more up to how I am feeling then the docs progress reports.I can even forget to take meds in the morning or wake up to take them and be so damn tired that when I wake up I say the hell with it as I do not even have the ambition to get out of the bed. But I am suppose to make sure there is a record of it. How can I do that if the doc will not or does not seem interested. I go to them only because my meds are free. Is this a normal progression of the Hiv/Aids disease?

My VL now is 14,000 and believe the t-count is around 400.

Also during this chronic fatigue I have tried to force myself to stay up and do things and I just start to feel sick. headaches nausea and lack of ambition. When I say I am just ready to let the disease take its course is not I believe depression but just my day is spent sleeping, taking meds and I do not have many friends due to me wanting it that way as I don't want them bothering me when I seep and stuff. Am I normal for the Hiv course? Once "aids" diagnose been made stay that way or can you keep switching from the aids to hiv and then to aids. I know I have asked a lot of questions through out this letter and I guess it sounds rather stupid but this is me and how I think

Am looking forward to your ans.

Response from Dr. Frascino


I'll try to answer your questions but if my responses are not clear to you please write back and we'll keep trying! First of all you do have AIDS due to your T cell count falling below 200. Once that diagnosis is made it stays even if you, or your T cells, get better.

Secondly Social Security reviews all cases periodically and they do rely heavily on your physician's notes and evaluation. Physicians are often pressed for time these days however you can help document your symptoms by bringing a list of your symptoms and concerns with you to your doctor visits and then asking him/her to include the list in your chart. It may also be worthwhile to have interim visits with an HIV specialist who can review your symptoms, laboratory work, medications, and treatment options with you. You could still get the lab tests done and your prescriptions written and filled at your VA center. If Social Security denies your claim you do have the option to appeal their decision, however its better to have your case well documented in the first place than to have to hassle with an appeal.

Thirdly, your symptoms of forgetfulness and confusion are indicative of cognitive dysfunction, a very common complication of HIV disease and one that may preclude you from certain types of employment etc. This condition should be documented in your medical record. This combined with your significant fatigue and detectable viral load may be adequate for full disability status. If you have access to an HIV benefits counselor, he/she may be able to help.

Next, your degree of fatigue is very significant. The potential causes should be investigated. The fact that you also have headaches, nausea, and lack of ambition may be related to an underlying problem such as anemia, hormonal imbalance, or clinical depression. Evaluation by an AIDS specialist is warranted to help sort out the cause or causes and to fully document your history and clinical course. Your quality of life is suffering as a consequence of your symptoms. If your physician is not meeting your needs it's time to look for a new physician or at least a second opinion. It appears to me that the time is now!


Always Sleepy in Seattle
hemoglobin vs. hematocrit

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