Maybe I'm Coming Full Circle??

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rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 12/8/2006 7:07 PM (GMT -6)   
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

Mezazinine
Regular Member


Date Joined Aug 2006
Total Posts : 100
   Posted 12/8/2006 7:28 PM (GMT -6)   
HTLV is in the differential diagnosis for multiple sclerosis but I think I remember reading that it will primarily cause muscular problems with a CNS infection. However, I would bet anything is possible when the central nervous system is involved.

The fact that you've tested positive 5 times is probably significant. Sometimes tests for infectious diseases can become negative if you've had the disease for a while (see http://health.enotes.com/neurological-disorders-encyclopedia/htlv-1-associated-myelopathy).

If I remember correctly, you're still in limboland and it may be worthwhile to look in to if your MS work-up hasn't been revealing. Perhaps an infectious disease consult is warrented?

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 12/8/2006 7:47 PM (GMT -6)   
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

BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 12/8/2006 8:07 PM (GMT -6)   
Rhonda,

WOW! I don't know what to say. I hope you get some answers and things get figured out. I will be doing some research tonight to see what I come up with.

Lysha
When everything's coming your way, you're in the wrong lane.


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 12/9/2006 3:32 PM (GMT -6)   
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

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/9/2006 4:57 PM (GMT -6)   
I'd probably do some research and find a doctor familiar with both the disorder and it's treatment, and then see if you can get a referral to him/her. You might start by calling the medical society in your area (there usually is a branch or chapter in each state) and see if they can offer some recommendations. Was it your internal medicine doctor who "un-diagnosed" you in the first place? I'd be real suspicious -- that many tests coming back positive, and suddenly a negative result...and be re-tested carefully again!

These infections can hide in the body a long time..as you noted...and maybe just was in remission at the time of that last test...
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 12/9/2006 6:49 PM (GMT -6)   
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

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 12/11/2006 3:49 PM (GMT -6)   
Rhonda,
I think it would be worth a call to your neuro to see if he could repeat the test and offer any other advice. As you know, we can read all kinds of things related to our conditions and they may or may not be accurate. I hope this will give you some anwers you need adn will offer hope and treatment. Take care. :)
Michelle ><>
 
Don't be so busy doing good
that you neglect to do what's right!

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