spastic paraparesis from HTLV-1

[Unregistered]

help! i am looking for others with this disease(HTLV-1) to see
if their treatments are improving their condition

i go to a major cancer center, and there is no one else being treated in the
whole hospital-my doctor is giving me methadone (6x10 mg 4 x daily) for
the pain,also actiq 800 mg for pain-also trying lidoderm patches,electro-
therapy,mucle relaxers

but still have increasing leg pain and spasicity

anyone with any suggestions?

peace, john

[maravi1951]

JoHn: I have been diagnosticated with the HTLV-1/2 virus and the lack of information is killing me.Can you contact me and let me know about yourself and where are you receiving treatment for the condition.
Thank you
Margarita

[Unregistered]

JoHn: I have been diagnosticated with the HTLV-1/2 virus and the lack of information is killing me.Can you contact me and let me know about yourself and where are you receiving treatment for the condition.
Thank you
Margarita

Margarita, where do you believe got HTLV-1/2 Virus? I am having symptoms that match spastic paraparesis.

[Unregistered]

I don't know how I got the virus I have been married for 20 years ,(my husband is negative to the virus) I am not a drug user,never cheated to my husband,I had bariatric surgery in 2002 ,I had blood transfusion then but I was told that the blood banks screen the blood so I dont have an idea of to how I got in contact with the HTLV1/2 virus.I am having problems with mi left leg in the muscles.What are the sintoms for the spastic paraperesis?How did you get the virus?

Moderated : Email address removed to protect user privacy.

[Unregistered]

I will like to know how did you become infected with the HTLV-1? Wich specialist diagnose the condition of spastic paraparesis ? I have the virus and I don't know where to go after being told of the positive virus results.I can't find other people with positive results.

[Unregistered]

source of infection can be very hard to define as many test positive after symptoms appear which may be 20 to 30 yrs after initial infection. this for the most part is a chronic illness rather than acute. Maintaining good physical conditioning is first line defense to offset the symptoms and drink plenty of water and if you like cranberry juice to avoid urinary tract infections.consult with your MD for other options as treatment is limited to a very few pharmaceuticals which may have little more than a time stemming effect.A close friend of mine has dealt with this affliction and is doing well through exercise and pt

[Unregistered]

How do I get in contact with you guys to be able to chat about this virus?
Margarita

[Ramiro Garza, JR]

Hi, Im a 35 yrs old male and I was diagnosed with spastic paraparesis back in 93. I went from dr to dr trying to find out what was causing my legs to be weak and have spasms. Well they couldnt find a reason why. My MRI showed that my spinal cord was abnormal. Meaning it is smaller than usual. I went to Houston for testing and they too could not find anything that was causing my weakness. I had the baclofen pump implanted and had that for a few years but after I was "accidentally overdosed" I opted to have it taken out. That was in Dec 04. I take pain medicine sometimes just to ease the pain that I have once in a while. I had great Dr's through this whole ordeal, just wish there was an accurate diagnosis. One Dr wanted to say I had MS but some of my symtoms didnt match up. Another Dr said I would be in a wheelchair by the time I was 26. I use a cane to get around, not a wheelchair. Although I do use one once in a while or my elec scooter if I know there will be a lot of walking involved. Good luck to everyone who was diagnosed with this annoying condition.

[maybee]

Hi margarita
My name is mayleen. my mother sonia was diagnosed with htlv1 about 2yrs ago. her health since has gone down hil, she had a baclofen pump implanted in her stomache and it has not helped her much she is also on morphine and oxycodone for the pain my mom is constantly in the hospital for severe pain. she is in constant pain and i am hurt to see her like thatshe feels alone. please contact me if u have any suggestions as far as to doctors and or treatment. it would mean so much to us.

thanks mayleen l

JoHn: I have been diagnosticated with the HTLV-1/2 virus and the lack of information is killing me.Can you contact me and let me know about yourself and where are you receiving treatment for the condition.
Thank you
Margarita

[maybee]

Hi my name is mayleen, my mom was diagnosed with HTLV1 about 2yrs ago and her health has been going down hill ever since she has lost alot of function in her legs due to the disease. She to also had the baclofen pump implanted and tha hasnt done much for her, she is also currently on morphine and ocycodone for the pain.please if any one can contact me for some support and or help with doctors or treatment. i would be so greatful.