Jibjen update

[illinwithoutacause]

hello all,

i just wanted to let you know that i got a PM from jibjen and she is doing okay.  she is recovering slowly from the post-LP experience and wanted me to let you all know.  it has been really challenging for her, but she is starting to drive and resume regular daily activities and hopes to be 100% again soon.

blessings to one and all,
binx

[illinwithoutacause]

thank you for your kind and thoughtful reply to my post, chanda.

i don't see much of a pattern with my flare ups as far as the seasons go, but
i do have heat and cold sensivitity.  i also live in CA (northern), but we haven't had extreme temperature swings in my locale as i'm on the coast.  if anything, it has been rather cold and gloomy here.  the sun is out today though!  hurray!

i have also been evaluated for MS and have hit a brick wall as far as that goes.  no lesions, normal VEPs, blah blah blah.  i am unconvinced that's not the problem, but the 30+ docs i've seen feel they have all but extinguished that as a possibility.

i am currently in the process of lyme disease testing and my first round of results were inconclusive (big surprise, there), but i just went for my second round of blood work and will get the results in about 5 weeks.  it's my last hope for dx for now, but we'll see.

in the mean time, i am trying to keep my head above the water line here.  all of you help me do that more than i can say.

blessings to you, chanda, and thank you again,
binx

[patientnurse]

Hi binx!
I was reading your post :( I really feel for you! Question-do your flare ups happen in a seasonal manner or do you just have normal remission/relapse kinda stuff? I'm currently being assessed for MS and have 2 relatives that are already diagnosed w/MS. My cousin recently told me that extreme cold/heat bothers her and that attributes to her flares. I live in CA and have noticed that my symptoms get worse in the spring/summer, and less so in the winter. I don't know what kind of climate you live in, but it may be worth looking into.
   Wishing you brighter days...and freedom from pain :)
Chanda (patientnurse)

[illinwithoutacause]

i am glad you're doing okay, sarah, and i'm keeping my fingers crossed that jibby is back in the game very soon, too.

i had a headache after my LP, too, but it nowhere matches the severity sarah & jibby have described/experienced.  my headache got a bit scary and i was about to call my neuro for the third time for some relief when it finally broke.  i will eventually need another one because said neuro told me i didn't need the MS panel because there was no way i had MS, and i believed him.  now every subsequent doc i see can't believe he did that.

anyway...i need to let that go.  i haven't seen that doc in over a year.

i have not been doing so well for the past 4+ weeks or so.  i have had a major flare of neuro symptoms, pain and fatigue which coincided with over 3 weeks of having my period and the inflation of my breasts.  they were outrageous and my husband told me i looked like i did right when i started nursing our daughter.  once the bleeding stopped, i started to feel a little less symptomatic.  i just don't know what in the world is going on, but it seems that every system in my body is out of whack.  i have also gained 15lbs since april and have a voracious appetite which i cannot seem to quell.  it's just crazy.  i am a hormonal nightmare.

anyway--as a result of all of this, i am feeling rather down.  i attribute part of the these feelings to seeing so many people out and about in the summer weather, enjoying themselves, living what appear to be normal lives (at least from my perspective).  heaven knows how much i am grieving the loss of my former self--it breaks my heart into itty bitty pieces.

so, there you have it.  i try not to unload too much, but sometimes i need to get it out.  my body is so out of control, i don't even know where to begin to get a grip on all of this right now.  i think the first thing i need to do is get a handle on my appetite since i know that only exacerbates my problems.

i hope you are all doing okay.  i know it has been pretty quiet around here lately, which makes wonder if everyone is doing a little better, or, suffering in silence.  if the latter, please come forth and let's support each other.

with healing thoughts,
binx

[sarahw244]

Thanks for the update!  I am glad to hear that she's doing okay, and I must say, I know how she feels.  I don't wish that upon anyone!!!!  

To suz and binx, and everyone else here, how are you guys doing?  Hanging in there?  I hope this finds everyone well and having a great summer so far!

Looking forward to Jen's return and big hugs to everyone!!!!

Sarah

[suzsibs]

Thanks for the update, poor thing I can't imagine how she was feeling.
How are you at the moment? I hope life is being gentle with you ;o)
Hugs
Suz