sparklehoof
Senior Member
- Messages
- 186
- Location
- North Carolina
Hi,
I'm new to PR and appreciate what a great community is here.
Like most everyone one the site, I have ME, would love to find some relief and am trying to figure out how.
I live in RI with my parents and I'm looking for an ME specialist- I have Medicare/Medicaid and became sick as a teen 15 yrs ago. I am about a '2' on the PR activity scale, though I was a '3' when I've lived in NC, but couldn't afford to stay.
I recently went to see Dr. Enlander, as he seems to be the closest ME specialist.
I'm interested in getting another opinion to see if I may be eligible to try something that I haven't tried such as the Maf category of treatments or anti-virals. At this point, I haven't found a treatment for pain, sleep, vertigo, anxiety, digestion or cognitive symptoms. It's been over a week since I've been out of bed for more than a few minutes at a time.
I'd like to have hope that I could improve, but my mom questions that if because nothing has helped in the past, that nothing will ever help. She's concerned that if she helps me with treatment costs that we'll just keep spending money with few or no results. Her concern is valid and I'm wondering if at this point, my focus should be accepting being bed/house bound rather than trying to improve my quality of life. I'm reluctant to accept a life in bed if there is a chance that I don't have to.
I'd suspect that it's unrealistic for me to believe that I'll make a full recovery, but I'm wondering if it's realistic to think that I may be able to progress from a '2' to a '3' or '4' on the activity scale.
I've contacted Dr. Montoya, Dr. Peterson, The Institute for Neuro-Immune Medicine, Miami and am trying to get on the wait lists, though my understanding is that it may take several years. I've looked into research studies such as Ampligen and the Ritiximab study in Norway, but I don't qualify due to money or citizenship.
If you have a doctor and or treatment that you believe in, I'm willing to use whatever savings I have and to travel anywhere I can for treatment. Thanks so much.
I'm new to PR and appreciate what a great community is here.
Like most everyone one the site, I have ME, would love to find some relief and am trying to figure out how.
I live in RI with my parents and I'm looking for an ME specialist- I have Medicare/Medicaid and became sick as a teen 15 yrs ago. I am about a '2' on the PR activity scale, though I was a '3' when I've lived in NC, but couldn't afford to stay.
I recently went to see Dr. Enlander, as he seems to be the closest ME specialist.
I'm interested in getting another opinion to see if I may be eligible to try something that I haven't tried such as the Maf category of treatments or anti-virals. At this point, I haven't found a treatment for pain, sleep, vertigo, anxiety, digestion or cognitive symptoms. It's been over a week since I've been out of bed for more than a few minutes at a time.
I'd like to have hope that I could improve, but my mom questions that if because nothing has helped in the past, that nothing will ever help. She's concerned that if she helps me with treatment costs that we'll just keep spending money with few or no results. Her concern is valid and I'm wondering if at this point, my focus should be accepting being bed/house bound rather than trying to improve my quality of life. I'm reluctant to accept a life in bed if there is a chance that I don't have to.
I'd suspect that it's unrealistic for me to believe that I'll make a full recovery, but I'm wondering if it's realistic to think that I may be able to progress from a '2' to a '3' or '4' on the activity scale.
I've contacted Dr. Montoya, Dr. Peterson, The Institute for Neuro-Immune Medicine, Miami and am trying to get on the wait lists, though my understanding is that it may take several years. I've looked into research studies such as Ampligen and the Ritiximab study in Norway, but I don't qualify due to money or citizenship.
If you have a doctor and or treatment that you believe in, I'm willing to use whatever savings I have and to travel anywhere I can for treatment. Thanks so much.