Tuesday, January 22, 2008

I have joined the MS Patient Registry

To read more about this, see Lisa's blog here: The NARCOMS Project, MS Patient Registry

I thought I share some of my answers so people can see what kind of experiences I have with MS.

Moderate Disability: I don't have any limitations in my walking ability. However, I do have significant problems due to MS that limit daily activities in other ways.

Minimal Gait Disability: Minor but noticeable effects on mobility. I am making minor adjustments in my work or lifestyle because of some difficulty in walking. I have given up some particularly strenuous because of walking problems.

Minimal Hand Disability: I have some problems with my hands, but it has not changed my activities.I do not write as well as I used to.

Normal Vision Functionally normal; no limitations on activity or lifestyle: MS has not affected my vision.I wear glasses but otherwise my vision is normal.

Mild Fatigue Disability: Fatigue occasionally forces me to change some of my activities (e.g., once a week or less).

Mild Cognitive Disability: Memory problems or confusion occasionally affect some of my activities (e.g., once a week or less).

Normal Bladder/Bowel: Functionally normal; no limitations on activity or lifestyle.I have not noticed any problems with my bladder or bowel control.

Minimal Sensory Disability: I have some problems with numbness or tingling, but it does not interfere with my activities.

Mild Spasticity Disability: Spasticity occasionally forces me to change some of my activities (e.g., once a week or less).

Minimal Pain: I notice some problems with pain, but they do not interfere with my activities.

Mild Depression: Depression occasionally forces me to change some of my activities (e.g., once a week or less).

Minimal tremor or loss of coordination: Sometimes I have some tremor or loss of coordination, but it does not interfere with my activities.

Which immunological therapies have you taken in the last six months?
Plasmapheresis/Plasma Exchange - No, never taken
Natalizumab (Tysabri®) - No, never taken
Prednisone (Oral) - No, never taken
Methotrexate (Rheumatrex®, Trexall®) - No, never taken
Interferon Beta-1b (Betaseron®/Betaferon®) - No, never taken
Cyclophosphamide (Cytoxan®) - No, never taken
Azathioprine (Imuran®) - No, never taken
ACTH -Adrenocorticotropic hormone (Actar®) - No, never taken
Celcept (Mycophenolate®) - No, never taken
Cladribine (Leustat®) - No, never taken
Interferon Beta-1a (Avonex®) - Yes
Glatiramer Acetate (Copaxone) - No, never taken
Interferon Beta-1a (Rebif®) - No, never taken
Gamma Globulin (IVIG) - No, never taken

You indicated that you have taken these therapies. Please indicate which ones you are taking now or have taken in the past.
Interferon Beta-1a (Avonex®) - Taking now

8 comments:

+PHc said...

I do not have MS, but AIDS so obviously deal with immunological problems and used to be in clinical trials for immune modulators which have been more successful for me than antivirals.

Your first one, Plasmapheresis - I don't remember what year it was, but I was in the very first group of the first trial of white blood cell exchange (leukopheresis) with my brother who had compatible antigens. His cells were marked with a radioactive isotope, so they could monitor where his cells went in my body (lymph glands and spleen) and how long they lasted. Not long. I don't know what became of that study.

And I didn't do Interferon. I knew some people who did. But I did do (and had the best response of anything) from Interleukin 2 injections which is similar. Strong flu-like response from over active immune function but the only thing that ever made my T-cells go up which is what I have to worry about. I did that until the study's funding got cut.

What do they monitor to know if the Interferon is helping you?

CS said...

That's a very thorough list, and I appreciate the explanation.

Anonymous said...

When I was first dx'd in 1976, there weren't too many therapies or treatments out there for MS.

I had plasmaphoresis for almost two years and I stopped the treatments because I saw no long term benefit. Benefit lasted a week at best.

Chemotherapy was used for two courses of treatment and I made up my mind that anything that made me that sick couldn't be good for me. Besides I hadn't had my children yet and I didn't want anything to cause birth defects, which no one knew about the treatments at that time.

ACTH by IV - This was a common therapy done inpatient in the 1970's. IV infused over 24 hour period, urine collection, blood draws every hour. Antibiotics were piggybacked because immune system was already compromised (the reason for the flare, they said) so the antibiotics was to cover the doctor's ass, not mine.

There were a few other hokey things around in the 1970's and I can't remember them right now. Perhaps later. Some treatments are on my blog.

I started supplements and diet regimen around 1980 (4 yrs post DX) and am still using this protocol today.

However, for flares, Prednisone is my first line of choice treatment, SoluMedrol IV comes in second, and there is no third.

Since 1980, I have refused all injectibles and still refuse them. No matter how much research and testing has been done, I still don't trust the DRUG companies for a daily/monthly/weekly injection that is going to give me flu symptoms.

Thank you for sharing,
Anne
http://disablednotdead-anne.blogspot.com

Lisa Emrich said...

Jim, thanks so much for helping to spread the information about the NARCOMS Project. This is the type of research which I can fully support and trust, especially since my neurologist is one who was active in founding the MS Consortium. The greater number of MS patients who provide information, the better data they will have for the research.

On a side note, I've been thinking about how to tell the story of my deaf piano student. Watch for it soon.

Unknown said...

Hi +phc, thanks for your reply and I am learning the differences between AIDS and MS from you.

To answer your question about "What do they monitor to know if the Interferon is helping you?". Usually the doctor will monitor and see how well your body responding. And if it does not, they would recommend trying another Interferon. I got lucky when I picked Avonex first and it worked for me.

Unknown said...

Anne, I have a strong respect for you and those who were diagnosed during the days when treatments for MS were almost nothing. We have come a long way since then. I ran into some people who were diagnosed in the 70's and they told me stories of what they went though. After hearing them, my diagnose was easier then theirs because they had a rough time with ignorant people.

I enjoy reading your blog and glad to have you in the community.

Jim

Unknown said...

Thanks CS. Your blog is cute by the way made me smile.

Unknown said...

Thank you Lisa and glad to share what I have learned.