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2 Diseases - MS and HIV
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yardguy posted:
I need some help on where I can research any information on people having both of these 2 diseases. With having MS, should I not watch my white blood cell count? With having HIV, should I try to increase my immune system (white blood cell count). Well, if I take my HIV meds the way I should then I will increase my white blood cell count. Shouldn't I not be concerned increasing my white blood cell count as that would increase my chances in having another MS attack. I am also interested in researching if my meds for MS is fighting against my meds for HIV and visa versa. I am receiving medical assistance from Salem VA Hospital and Clinic in Salem, Virginia. My infecious disease Doctor has not heard of one having both diseaes and I am the only patient w/ both that my Neurologist is seeing. I had the opportunity to visit the medical library @ the VA Clinic and with the assistance of the librarian, we discovered that there is no information on studies with people having both MS and HIV. Until I can find material on ones having both and/or case studies dealing w/ people having both, I will continue to take all my MS, Neuropathy and HIV medications but make sure to keep my T cell count low (suppressing my white blood cell count). At present I am taking my HIV meds every other month. Increasing ones T cell count when they have MS, will have to stay a mystery. I believe in the saying "don't try to fix what is not broken".

Eddie
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Rory26312 responded:
Hi Eddie

This is new to me too but I would contact the national MS assc directly and see if the have any case histories on record that might help you.

You are correct in trying to balance both conditions I sure would want your promblem to be honest.

Try to stay healty

Rory.
 
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AL0728 responded:
I'm with Rory, I would talk to the NMSS. I can understand there would be few if any studies on people with both diseases, as it has to be rare.

However, you could be patient #1 with both conditions and a scientist would probably want to follow your case.

I understand your quandary, it is the first I have heard of. Please let us know if you find anymore out about it. It is a tough one.

Thanks for posting.

AL
 
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yardguy responded:
Thanks Rory. Will contact national MS.
 
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yardguy responded:
Hey Al - I will definitely get back on here and give my findings. Thank goodness I shave my head or all my hair would be pulled out by now.
 
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Teehazel responded:
What brought the conclusion of MS? Look into HTLV I, HTLV II, HTLV III and HTLV IV which can be mistaken for MS or atleast a couple of those can. Those can be neurological, cause leasions on the spine, give the spasm thing, ballance and so forth. Sorry to give you another something to research but it ties into the MS AND HIV

Email me what you think teehazel@yahoo.com (Teresa)
 
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justducky65 responded:
Hi Eddie. So sorry you are battling 2 diseases. That stinks. What kind of doctor treats your HIV ?? Like Al said, you should be of interest to science so I would seek out some advice from the MS board or tell the MAYO clinic or a research hospital.. You may get some free treatment and help people in the future.

I would think if you can only treat one you would need to treat the HIV first but I dont know...... there was another lady on here that had MS & Rhuematoid Arthritis and she was only treating the RA...

Stick around and let us know how things are going for you !

Best Wishes & Hugs Debi
 
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AL0728 responded:
It was good to hear back from you. I look forward to hearing from you again.

AL
 
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yardguy responded:
Hi Debi, thanks for your message. The only Infecious Disease Doctor at the Va Hospital treats me for my HIV. Neither she nor my Neurologist there can give me any answers nor do they do any type of research or studies. I am thinking about looking into John Hopkins Hospital as I believe they do case studies. If I can, I would like to chat w/ a Doctor online there or atleast see if they have any answers. We'll see.

Will let you know what I find out.

Eddie
 
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yardguy responded:
Hey Rory and Al and the rest, I wanted to get back and say that I still have not found any answers yet about any studies on both. I do plan on emailing the National Society and asking them. Will update ya'll when I found out anything. Yardguy - on a mission.
 
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hackwriter responded:
Eddie,

The U of British Columbia is conducting several MS studies across several sub-fields, two of which are virology and immunology. They might have a team of specialists who would have more than a passing familiarity with how these two conditions act together and can be treated, and they might have had more patients like you walk through their doors than other institutions.

Here's the link:

www.ubcneurology.com/Research_MS.html
 
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yardguy responded:
Hackwriter - I didn't ever thank you for the information. I will let you know what I hear back from them. I did email Johns Hopkins U. They haven't done any studies w/ ones that have both of those diseases but they gave me some contacts that might be of some help. I also emailed the National MS Society - waiting for a response.

Eddie
 
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yardguy replied to AL0728's response:
Rory - hope you will read this (along w/ Al and the rest that talked to me in the past). It took me a while to find this because of the new format.
I have emailed the NMSS, John H Univ and the National Cancer Center. All of which did email me back and gave me some sites to check out. All of which has been a dead end.
Debi and Hackwriter - I have not contacted Mayo or U of British Columbia - sorry - those are next.
Will keep all of you informed.
Eddie - Yardguy
 
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norelco replied to yardguy's response:
I too would like to find out any info about this. I am being tested for ms and have other diseases, AIDS, fibromyalgia, XMRV,
Rnase-L Defect etc. I have found it necessary to treat whatever problem is bothering me at the time. Did you have the ms or AIDS diagnosis first. As usually, when one is given an HIV or AIDS diagnosis, the doctors stop looking and there 2 items get all the credit, which is so unfair to the patient. In my case, I had symptoms that AIDS did not address, so I kept searching for answers and had the appropriate tests performed, which is still only half the battle, then I need to find someone who can treat some of these issues.

Hang in there and always keep searching for the light at the end of the tunnel!
 
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eliandgracesmom responded:
I wanted to ask you if you have found anything out regarding MS and HIV. I am very high risk for HIV as my husband is HIV . I was diagnosed with MS July of 09 and he was diagnosed with HIV July of 09.

Thanks.


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