Documenting symptoms and treatments prior to starting CAP.
A little about me personally - I am 50yo female who has led an active life. I was always working or bringing up children in their pre school years. I was in the RAAF, worked on minesites, worked in computer technology and as a security offficer. I was at diagnosis mother to two remaining children, working as a security officer and studying a BA Hist. Luckily, I have the best in-law family in the world, and have had wonderful support from my husband's mother and sister.
After I got sick, my husband got me a Cavalier King Charles Spaniel to keep me company and now I have two, having asked for another for my 50th birthday present. They are completely adorable and have made my life so much nicer and more companionable. I feel that I am one of the luckier people in the world to have loving and supportive people around me and a nice home, my children and my dogs. Best of the bunch though, is my husband.
I was diagnosed with MSi in Jun 2006 when I was 44. There had been several pointers in the 5 years previous but no one added it up until an MRI of my spine was taken and a lesion found. I was then hospitalized and had MRIs of my brain and several lesions were discovered. With my medical history, the MRI and previous relapses combined to allow a diagnosis of MS.
I started on Rebif but discontinued that after a few months due to developing hives which were also part of my relapse at diagnosis. I started Copaxone in June 2007 and have been on that since. Nexium was prescribed in Aug 07 and I finally had relief from the constant reflux. In Jan 09 my legs, particularly my left leg which had given various problems years previously, had spasticity and I was started on Baclofen. Dec 09 pain was starting to become a problem and my Vit D levels were low. I started on Endep and was finally able to sleep nights and various doses of Vit D were tried and eventually I settled on 3000iu as the best dose for me.
My blood pressure sky rocketed - I was very surprised, I had no symptoms of this and my BP had always been perfect, even during four pregnancies, I started Avapro for that but have since moved to Karvea, which is the same, I think. I was generally suffering from terrible fatigue but in Apr 09 I started Inclined Bed Therapy and was stunned at my fatigue disappearing overnight. I still had very low and non replenishing energy levels, but the debilitating fatigue was gone.
Being lactose intolerant, I have taken Caltrate since I realised that. I also take 4000iu Fish Oil daily. I have only been hospitalized once and given oral steroids at the time of diagnosis and not had any since.
Changes that MS has enacted since diagnosis:
- chronic fatigue
- sexual dysfunction, complete loss of sex drive
- hypersensitivity, particularly of the leg muscles, and girly bits
- eyesight deterioration so fast my optometrist continually argues with me and sends me off for diabetes tests. Blurry eyesight in the mornings - the good old vaseline vision.
- lost sense of play, whimsy.
- lack of energy, drive and determination
- frequently suffer balance issues, occasionally use a cane - under protest.
- left leg weaker than my right
- muscle spasms in legs
- restless legs syndrome
- occasional urinary incontenence
- very occassional bowel incontinence - "surprise poops"
- word fishing
- brain fog
- tingling and pins and needles in left hand and arm
- numb feet
- cold hands and feet
- horrible insect bite reactions
- itchiness all over, particularly one spot on my back
All of these add up to a fair level of discomfort but to meet me most people see me as normal, unless I have my cane with me for balance. One of the symptoms that took me a while to realise was that I now do not cope well with multiple people situations. One on one I can take in and register body language, facial expressions as assimilate the conversation as well but any more than 3 people and I rapidly lose sight of any or all of these.
So that is my story to date. I was very interested in the CCSVI hype and would have gone for the Liberation treatment but apart from no one doing that in my town or state, it still only addressed symptoms and not the disease. This CAPi is the first time I have found something that looks to answer all the questions and also treat for the disease instead of bandaid the symptoms. I am looking forward to starting but at this point I will take a week or so to think tings over and just do a little more research.