Re: home from hosp/bad day/reply to Kate

[Guest guest]

Kate, I have Secondary Progressive MS as well;

I am still here; still walking, if a bit oddly, using my

wheel chair as needed (primarily due to my back),

and I am really old: 71! Diagnosed at 19.

The way my neuro explained it to me is that with

Secondary Progressive, it is just "there," and one

has fewer "exacerbations," "flares," or "episodes,"

which has proved to be the case with me.Love to you, and just know that we are all here

for you!

Love,

n

To: MSersLife Sent: Tuesday, December 2, 2008 5:54:49 PMSubject: home from hosp/bad day

Dear Friends,I cannot thank you enough for your outpouring oflove, prayers, good thoughts and phone calls--from Cassy andDan a. Not sure if there were others who attempted to call, butsuffice it to say, it was difficult to get through on those 2 phones!So...home from hosp., yesterday, and ready to jump into CDT-todayContinuing day treatment--a structured day program filled withgroup therapy, art therapy, etc., etc. to find out that at FIRSTthat my insurance did not cover, but, after 2 hrs. of my sobbingand their phone calls, it was realized my insurance DOEScover, and all I have is $18 co pay each day....phew! Thenthe interview/intake procedure was tedious and emotional asthey delve into EVERYTHING imaginable! Yet I appreciate thatit is only for the good of serving me. I still have another hour orso of intake tomorrow....Then, part II

of my day....going back a bit--I had a neuro consultwhile in the hosp. to make certain I was not having a flare, whichI was not. The consulting neuro was a bit abrupt; ordered a brainand C-spine MRI and when they came out fairly good--one lesionappears smaller!, he looked at me and said, or asked, why wouldyou want to be on a drug that could potentially kill you, i.e.-tysabri! !I was so shocked I was speechless, not to mention being in thehospital for severe depression and suicidal ideation! So--he unilaterallydecided to cancel my infusion for yesterday! Outrageous! Don't you think?My psychiatrist rather sided with the neuro saying, well, you do seemto have what this neuro calls a mild form of MS...I said, he is NOT mydoctor, and he is not the one to chose my treatment, that is my choiceand between me and my neuro... Needless to say, today, after thewhole emotional insurance

debacle, I called my new neuro (who I beganseeing in Oct.) and told her the story. The consulting neuro used to sharean office with her, that is an aside, however....anyway, she was livid. She said he had no right to do that, and MRIs do NOT determine MS andlesion load does not dictate severity. Then she hit me between the eyes...At least it FELT like it...She said MS is based primarily on clinical findings,and you (me) definitely have Secondary Progressive! I kinda wished shehad given me a heads up on this back in Oct....once again...speechless, soI was rather unprepared to say ANYthing... I am sorry this is so long winded,it has been a rather unsettling, upsetting 2 wks, and then to come home andnot have the house as I was hoping it would be--picked up a bit...then today'semotional rollercoaster, well....I am still reeling a bit. Perhaps SPMS is NOTwhat I have. I may well call my

last neuro who dx'd me originally 12/8/05 (although I believe I have had MS since 19) and see if I can talk with him onwhat he thinks and his opinion....any thoughts on this? Or any thoughts oradvice at all? I'd be grateful for any feedback. Well, long enough here...I love you each and all, and am blessed to have you as family, always, KatePlease visit: http://www.bicyclem an.comawesome guy, fantastic site. All types of bicyles, many recumbents; perfect for an MS Bike Tour!