Name: LISA G
Female Age: 47
DX RRMS 11/02
RX Copaxone 12/02 until yesterday!
2 Lesions: one very near my left jugular vein, the other right frontal lobe somewhere. The interesting part is I told the neuro where the left one was. He told me there was no way I could know that. I told him it hurt. He said that's impossible! Really? Then why am I telling YOU where it is? I KNOW this has something to do with CCSVI
MS HISTORY AND BENCHMARK PRIOR TO INCLINED THERAPY:
I am so lucky! I started with some left side motor issues. Couldn't pick up the phone with my left hand and get it to my ear. Tried to walk straight down the middle of the hall at the high school where I teach, and always ended up walking with my left shoulder rubbing against the lockers. One custodian told me that I'd have to cut back on the drinking now that school was back in session. Nice!
Am able to sit in a hot tub all day with no effects. But exercise that heats up my core causes these left-side issues to return until I cool down. So...stopped exercising and gained weight. Every once in awhile my left foot drags or fails to go where I think it should. This caused a fall in the middle of class (stunned 11th graders!) which resulted in a broken shoulder, huge black eye and messed up elbow 12/15/08. Before then, fell several times while walking for exercise. I don't do that any more. Now, I ride stationary bicycle in my house with fan on HIGH and bottle of ice water I force myself to drink at intervals throughout time on bike to try to keep everything cool. So far, so good. The weight is starting to come off.
Sleeping has been interesting only in that my hands keep falling asleep. I have attributed this to sleeping on them under my head while I sleep on my stomach. I am endeavoring to sleep on my side and back, but it's a lifelong habit!
Other than that, I've been super fortunate. I have no obvious symptoms and in a given day, don't feel any symptoms unless I walk quickly for a long time, get warm, and then I notice my left foot and where I place it very carefully. I am at the stage where no one would think I have any health issue other than fat!
Please include any of the following that relate to your particular circumstances (Thanks for listing these! Most I had forgotten or am so used to they didn't even spring to mind!):
Cold feet or hands, fidgety limbs in bed, fidgety RIGHT leg in the evenings, loss of movement in limbs, snoring, poor sleep, sleeping disorders, breathing difficulties, problems with balance. bladder control, night time bladder urgency, bowel function, memory loss, backache
GENERAL GEOGRAPHICAL LOCATION:
I live in the San Francisco Bay Area and teach high school on the peninsula between San Francisco and San Jose, CA I am an Air Force brat and Peace Corps Volunteer (oxymorons?) who has lived on several continents, but mostly in sunny and warm California.
My mother is white, French-Canadian, and 65. My father is an African-American from New Jersey who is 73. My paternal uncle was diagnosed with MS at 19 and died at 59 more than 20 years ago. The few descriptions I've heard of him lead me to believe he had something a bit stronger than my RRMS.
My symptoms at onset are listed above. Mostly walking difficulty, entirely on the left side, and some few other motor skill issues, also on the left side. I still live in the same home eight years later that I lived in when diagnosed. I teach in the same school. The only thing new (5 years new) is my husband. My home is 3ft above sea level and I can see the SF Bay from my front window.
I have been on Copaxone since 12/02. I have had no problems with it other than a few injection site issues that have mostly sorted themselves out over the past eight years. I have not experienced the dreaded IPIR and hope I never do. As of yesterday, I have decided to stop using Copaxone, continue with the best diet and exercise program I can, and use IBT to help with my issues.
EDSS before I.T. intervention (self-assessed): 1.5
FSS before I.T. intervention: 1
MSIS before I.T. intervention: 35
I'm sorry I didn't know of this page before I inclined my bed two weeks ago. I had been reading about IBT on THISISMS.com and decided to go for it. I completely 100% believe that MS is a circulatory issue and that IBT may do something toward lessening this issue. I lifted the head of my bed 6" two weeks ago. Immediately, I started dreaming and remembering my dreams. I go to sleep almost immediately, there is no tossing and turning, and wake up about half hour before the alarm clock as usual. My husband says I am making lots of noise in my sleep and that he can tell that I am dreaming much more than before. I haven't noticed any changes in myself physically, but the sleep pattern changes are really noticeable. I have not had to get up one time to urinate since inclining my bed. My average was once/night during the week and twice on the weekend. So far, not getting up and all the dreams are changes I am keenly aware of. I'll let you know what else happens!
Please ask questions! Lisa G
Still dreaming up a storm. Am hoping that this means I'm sleeping more restfully and will not need as much sleep as before. I'm definitely a morning person, but it'd be nice to stay up past ten every once in awhile! Fingers crossed!
So far, I don't feel any real differences of any kind. I felt good before, so this may have something to do with it. Will keep you posted.
Realized three days ago that my bed couldn't possibly be at a 6" incline the way I had it set up. I had forgotten to take the casters off at the foot of the bed. I checked and was correct, only 4.5". I took them off, re-measured everything, and I'm now sleeping on a 6" incline. (As of two days ago.) So far, so good, still with plenty of dreams. I am hoping for some residual swelling in my right leg to slowly go down over time. (From a break in 1998 - my leg has been swollen to some degree or another for twelve years!)
I am very much enjoying being Copaxone-free and am using IT as my one and only 'treatment' for MS. I look forward to participating in a clinical trial for CCSVI if I can get into one.
I have had zero issues with inclining my bed. Nothing is sore, nothing seems to feel differently, I'm sleeping better and feel like I'm helping my poor neck veins do their job better. So far, so good. Please ask if you have any questions!
Thank you for adding your journal to the forum and for providing useful information to help identify any changes in the future.
Living in the bay area certainly fits with the humidity connection. Purchase a humidity meter. These are usually a couple of dollars. Might provide interesting readings living so close to the coast. I live close to the coast also and it gets very damp here and very sticky in the summer.
RE: IPIR and Copaxone. Forgive my ignorance but not sure what the drug is supposed to do for people with ms and why it should cause a severe reaction for some people, but assume it must be like an anaphylactic shock?
I'm not sure anyone knows what Copaxone is supposed to do for folks with MS, except that is has a similar efficacy (if I may) to the interferon drugs with regard to slowing down the progression of the disease. My understanding is that 1/3 of those in the trials experienced a 1/3 reduction in the number of relapses. That if 99 people with RRMS experience, on average, one relapse per year, that over the course of three years on Copaxone, Avonex or Rebif, 33 people would experience two relapses instead of three. If each relapse potentially leads to more progression of the disease, certainly, fewer relapses are to be desired. I have experienced zero relapses in my eight years on Copaxone. (Of interest to me, of course, are the 66 people who went ahead and had all three relapses on Copaxone, Avonex, and Rebif, anyway!)
I'm not sure why Copaxone causes the IPIR (immediate post injection reaction - that sounds an awful lot like anaphylactic shock to me, as well). I have always found it interesting that Teva says that this might happen without ever saying why. I think, with this and other drugs, they have no idea why.
What I do know is that I have never bought the autoimmune explanation for MS. Everything about CCSVI makes sense to me. I.T. (I've been referring to is as IBT, sorry!) Fits the CCSVI theory, and as soon as I heard about it and was able to get the head of my bed off the ground, I did. Frankly, I don't see a real reason to continue on the Copaxone. I am making this decision for me and me alone. Everyone should read everything and make his/her own decisions. I am not suggesting this for anyone.
I am aware, then, that there is a slight possibility that some of my experiences with IT might be influenced by the decreasing influence of this drug on my system. I don't know how I'll be able to tell which is which, but it's something I'm happy to try to sort out as we go.
Great post and hope that your decision to use IT instead of Copaxone proves to be a favorable one. I too don't believe suppressing the immune system is the answer. Andrew could use 1'000 more like us who are doing IT as the primary treatment, so no one else can take the credit. Good luck!
I raised my daughter in the Los Gatos school system, maybe 30 miles south of you. The Bay Area is damp in the Winter and the house I was in had a mold problem, (could smell it under the bed and in the walls). I used to get sick with cold/flu and bronchitis at least twice a year. Moved to the desert and wasn't sick for almost 10 years. You probably are quite humid right there by the Bay. Not sure where Andrew is going with this, but I'm sure environment factors in. It usually does. Health and disease is more about the big picture, not treating the symptoms.