Sunday, September 19, 2010

Hi Ho Update! Fun with walking......

Hi all !

Update to my post - Hi Ho - It's off to the doc I go.........

Repeat NCV showed a halt or if I want to show off and use my Sclero-Cabulary....a SCA-LT (scleroderma induced screeching halt!).

My legs still sometimes "give out" as do my arms (like in Yoga when we were all silent doing a pose until my arms gave out and you heard a loud BONK vibrate through the yoga room....good times!)

(oh yeah...the BONK was my forehead hitting the ground., good thing I'm hard headed!!!)

Anyway - Now the doc is thinking monthly IVIG injections at home. 8 hrs each for two days through IV - so if y'all have any good must see DVD movies let me know...I'll have about 16 hours to kill pretty soon!!
And if your local and want to join me for hydration and movies...Like Bob Barker always says's......
Come on Down!
Anyway - Actually hopeful about the IVIG - looking forward to see if it does relieve some of the neuropathy and weakness.
What is IVIG: it is essentially (very layman analogy) replacing my immune system temporarily, infusing it with immuno-globulin from donors to flood my own crummy system with un-broken plasma. The results/relief is temporary, as my immune system will catch on and my over-aggressive soldiers will essentially win the battle over the newbie cells again and create autoimmunity - BUT the interim of relief is said to last about a month or in that time you are supposed to feel pretty good.
I heard from a CIDP friend that you feel crummy after the 2nd day and are kinda ugggg for the third day, but day four you are feeling pretty good. She says it's worth it and she couldn't live or WALK without it!
I'll keep ya posted!


  1. Hi! My story is somewhat parallel to yours, so I am very interested in following your blog. I was diagnosed in December 2008. Do you have limited or diffuse? My doctors do not have me on any meds, and I really need to do something! My major problems are esophagus involvement, terrible fatique, and stiffness. Thanks for posting the tests that you have had. This is giving me some direction. Georgia

  2. Hi Georgia ~

    Thank you for visiting and following!!

    I'm a Limited Girl myself...diagnosed in 2009.

    I sought several opinions when I received my lab results, which means I got several differnt opinions.... (ba Da Bum..Ching) : D

    It's crazy and mind boggling, so don't let it get you down. Just be your own advocate and if things don't feel "right" then trust your instinct. It's OUR bodies and we've lived with them.

    Anyhoo.....I'll step off my soap box and stop being Sally Feild for a while.

    My first Rheumy said:"You have Scleroderma" - and added possible Lupus overlap. Because he was so firm in his diagnosis, he wanted to start medication ASAP - not because I had severe symptoms - but to suppress my immune system. That is his theory of halt disease progression so I don't get severe organ involvement (hopefully) for 10 -20 years...i.e. organ failure, PAH. etc.

    Believe it or not, The MAYO clinic doc actually told me to "Come back when I got worse" - then we would start meds. Ummm ?????? ok?

    I was SO confused. I sought an MD in Riverside who was listed on the Road Back Foundation Website, who advocated AP therapy - and he too said, "Well - You got it" but we do AP therapy and see great he wanted to start me on Zithromycin 500mg twice a week and increase from there.

    Now I was even more confused - I had 3 different theories of medicine. At that point - I was no longer in denial that I had the Big S /Autoimmune Disease which truly helped me mentally and emotionally.

    If I had just seen one doc, I think I would have always questioned "Is this real" - Is he right - Do I really have this" - so in that respect, the 3-4 opinions were a great idea.

    In the regard of getting a clear cut treatment plan, well - not so much, as each had their own philosophy.

    I had to do soul searching and realized that I was in change of my own body, not the MD and I had to agree with the treatment plan and modality (or lack there of) in order to feel comfortable with my diagnosis and feel in control of it (and my life).

    What it boiled down to after talking with my PCP in great detail (he is a life saver) and my friends and family - what philosophy did I beleive in, and halting the progression before it got worse made the most sense to me.

    I could not in good concious just "Wait to get worse" once I had finally accepted that I had this bloody disease. So, although I love my Mayo doc and I am compliant in my testing and FU visits with the Mayo Clinic - I did not agree with waiting...

    I follow the treatement regime of my first Rheumy. It started off with Plaquenil and Prednisone for flares.....but my hands started to get worse, so he upped me to the Methotrexate weekly low dose chemo injections...

    I guess what it boild down to is that you must feel comfortable and in charge of your body with this disease in SOME way, since it does not play fair and is always changing the rules.... and I guess the one way you can have some control is in choosing the treatment YOU Feel most comfortable with....and for some, that is nothing.

    For others - that just causes a continued chronic anxiety, which does NOT Mesh with this disease at all, since as you know - Stress and Anxiety - exacerbate this disease.

    If you don't agree with no meds... then find an MD for a second opinion. Mine was firm on "This is not about symptoms as much as it is about slowing down your immune system for later"

    That is HIS philosophy. Maybe your doctor is more along the lines of the Mayo where they get aggressive when you get worse? If you dont feel comfortable with that, I would truly, in my heart, suggest a second - third opinion.

    My symptoms sound a lot like yours too. You are not alone!! I am sorry you are going through this....I really am.

    Please write anytime!!

    Have a beautiful day Georgia!!

    Peace ~