Maybe I'm Coming Full Circle??

Hey Everyone

I was doing some research last night...yet MORE to obcess over...and found something interesting. As some of u may remember, i had a blood transfusion a year before my symptoms started and subsequently tested positive for a blood infection that resulted from that transfusion. It's called Human Lymphotrophic T-Cell Virus...or HTLV for short. I only found this out after giving blood and recieving a letter from the blood services office stating my blood had been denied (same service by the way that provided the transfusion for me!). At the same time i'd already started to see my ob-gyn for the fatigue and general not feeling well. That was where my journey started..and the two things (HTLV and MS) merged. I tested pos 5 times for HTLV and on the 6th time (final test to determine whether type 1 or 2) i tested neg. I was completely overjoyed since my doc said that test was more accurate and should be accepted as the final answer. I now go annually to have the test repeated 'just in case'. Welllll...in my research last night (trying to determine if i'd missed something and am on the wrong ms path) i did another search of 'ms mimics' and came across something interesting. HTLV is considered an ms mimic. Not only that...it is an infection and can infect the cns. It can 'trigger' ms. OHMYGOSH. At this point i'm completely dumbfounded. Could this all be the HTLV or MS or HTLV FIRST and NOW MS??? I know i have to have that test repeated soon and at least try to put my mind at rest, but really that won't put me at ease. Afterall, i tested pos 5 times and was told the 6th one that was neg was the one to go with. I guess i don't really have a point except that here i am...a year later and no answers but back where i began. Surely there must be a connection? HTLV isn't normally tested for except by people like the blood services since they'll be passing on u'r blood. So, i'm sure i wasn't tested at any of my doc's offices. Does anyone know anything about HTLV? It is a cousin to HIV, but not HIV and doesn't develope into AIDS. Boy, what a great way to begin the weekend. Thanks to u all for reading.

rhonda

Hey Mezazinine

Thanks for u'r reply. I'm only starting to research the connection between ms and htlv, sooo much to learn. Thanks for the info! I'll be visiting that site in a few mins! It's very confusing because it's hard to follow all the terminology. I had a hard time trying to research htlv in the beginning and seems now it's harder to follow then it was before.

I saw an internal med doc for this before. He's the only doc in my area that has any experience with htlv and other such infections. Would u think i'd need to move on to an infectious disease doc?? Yes, i'm in limbo and until i know for sure what's going on i'll continue to do this research and see any doc who may be able to give me answers. Strangely, my doc felt the one neg test outweighed the 5 pos. I have always wondered about it and figured there was more to it since i'm being kept a watch on. Why else would they want to retest annually? Thanks for u'r help!

rhonda

Hey Everyone

Well more research later....HTLV can develop into AIDS. It can also lead to a disorder called Tropical Spastic Paraparesis/Myelopathy which is much like ms in that it has many of the same symptoms, but not all, and in the way that it affects the nerve coverings just as ms does. It's progressive and cronic with very little treatment avail. Primarily physical therapy and (later if u have urinary issues and most likely would) there's the ever favorable catheter. Lookin better all the time, eh? That said, it usually doesn't show signs of the ms nature for several years after infection...3rd to 5th decade after. My doc originally told me i could go 30 - 40 years without any symptoms or may never have any symptoms. My research says if TSP develops it may move rather quickly to the symptomatic stage, but again getting to the TSP stage can take several years in most cases. Still i'm dumbfounded. I have a standing appt to be retested in Jan, but will be calling to move that up if possible. I'm not sure if i should try to move on to an infectious disease doc or stay with my internal med doc. Does anyone have any suggestions or advice on that? Thanks.

rhonda

Hey Uppity

Thanks for the advice. I hadn't thought of calling anyone outside of the doc's office. Yes, it was my internal med doc who undx'd me. In my initial visit with him he told me he was sure i'd be pos, but we were gonna go ahead and do the test anyway and go from there. He was basing that on the letter i got from United Blood Services. He said the final test to determine type was more accurate and therefore more reliable. Yes, i've wondered why the need to be retested, but assumed all was fine or they'd have said so. Of course that was before this last year of doc visits and tests galore. Also, I did read last night that within the first three months of infection the antibodies are there, but after that they aren't present and will give false neg test results. Did u know u can actually sell u'r blood during that three month time because u have the antibodies and the infection is so rare as to give need for them??? Anyway, thank u for u'r help. I'll be moving on this Monday morn.

rhonda