Hi

[jibjen]

Hi Everyone-

I know it has been pretty quiet here but wanted to check in and see how everyone is doing.

I hope you are all doing well. I am thinking of you ;o)


Big Hugs
Jibby

[sarahw244]

I just had to laugh!  You just made my day a little brighter...You can't even get high properly, lol!  That's too funny :-)
Sarah  
PS...I'll start a new thread about my neuro appt.

[illinwithoutacause]

hello there,

thank you all for your kind words and support.  i go see my neuro @ 9a.m. PDT and will report back in.  like i said, i may be on the hunt for a new neuro after this visit.  we'll see.

sarah--how did your neuro appt go today?  i was thinking of you, with fingers crossed and prayers going your way that you got some tangible information and a plan.  please update us when you can.  i hope you are able to get out of your funk as well.  there must be something in the air.  i am really struggling, too.

georgia--i am going to ask about the LDN.  i just read about a study that took place at stanford where there were significant results showing its effectiveness in relieving neuropathic pain.  you're right-- i could probably get a medical MJ card, but the stuff just doesn't agree with me, unfortunately.  i get nervous and incredibly paranoid which is a total drag for me.  i swear, i'm so goofed up, i can't even get high properly.  LOL!

jibby--a mimosa on your deck sounds heavenly.  aaaah.  just thinking of it makes me feel a little better.

suz--i'm glad to know you are responding well enough to your new meds, and i hope you are feeling okay in spite of the jerky jerks.  it's been a while since we've connected.

blessings to you all,
binx

[jibjen]

Hi,

Hmmm.. I think they should call either way...I'm needy that way LOL...

I'm sorry you are having "jerks" and glad you are not dealing with nasty side effects..


Bid hugs back to you...


Thought of you and Georgia..as I was sipping on Mimosa's this weekend on my deck....

Jibs

[suzsibs]

Hi Jibby
My first neuro told me he only rang patients if there was bad news, he was too busy to be ringing every patient with good news so good news can wait until your appointment so let's us assume your neuro thinks the same way, forever the optimist.
I am coping as usual with my jerky body and my new meds aren't giving me any major side effects so that's good news.
Sending hugs to you and all those in limbo land.
Suz

[sarahw244]

Just wanted to let you know I am still around, too.  I have been super busy lately, trying to stay afloat with an excelerated summer class, doctor appointments, running after the kids, etc.  I have kinda been in a funk the last few weeks, not sure why or what it's about...

I have a follow-up with my neuro tomorrow afternoon to go over all my EP's and LP and if they aren't conclusive, will discuss symptom management and where to go from here.  If anyone feels up to it, please pray for me to finally have some answers :-)  You could also throw one out there to help me get out of this funk, too :-)

Hugs to all and I hope you are all doing well!  Good luck, Jibby, at your appointment this week, too!  I'll say a prayer for you!  And to Binx, I hope you are feeling well soon!  Hopefully when you meet with your neuro you can get some answers as well!  Prayers for you too!

Sarah

[geofran]

Hi Binx,  

So sorry you are in such a bad flare.  Can you figure out what caused it?  Did you overdo?  I got that way after planting 12 flats of flowers around the house.  It took a good 2 weeks to recover.  By recover I mean bearable.  Are you still on antibiotics?  They too can play havoc with your gut and make you feel miserable.  I totally understand how you feel.  I pray everday that God will take "this" from me and all of us that suffer this way.

It's good that you got that appointment.  You might want to ask her to about LDN.  I am up to 3mg a night and although it is not a cure all it definetly helps.  When I feel better I stop taking it but always go back when I have a flare.  It cannot hurt you.

You live in California, right?  What about cannabis?  It's legal there.  It's supposed to help nerve pain.  You need some relief.

Maybe a new neurologist?  I don't know either.  Mine have been the same...not too concerned.  

Good luck at your appointment.  I will be praying for you.

Hugs,
Georgia

[jibjen]

Hi Binx,

You never have to apologive for resting and taking care of yourself. I am glad you have an appt. and understand just thinking about searcching for a new doc can be exhausting...maybe when you are in a better place you can begin to seek out another..I just don't understand how she can NOT be concerned about you....Rest and be well my friend..you will need your strength for your search.....until then at LEAST you have an appt with a EMG and Lyme test re-do..

I will let you know about my appt...I am really hopeful this will bring me an answer...I have been trying to figure out his reason for not calling me....good... bad....I just don't know..my theory is..if everything was fine he would have called and said eveything is fine no MS and I'll see you at appt.....OR called to say I got MRI back and I want to send you for LP b-4 next appt....I just don't know..but nothing.....hmmmmmmm...

"If MRI is un-revealing, order Spinal Tap"...Well..nobody has called me to order this...yet.... that is what my puzzle has been..but I guess I will have to wait til Thusday to see which piece fits next.

Take care jenny

[illinwithoutacause]

hi jibby, georgia and everyone,

i am sorry i haven't been on much lately.  i have been having a really terrible flare up during the past 10 days or so.  when i am feeling so poorly, i tend to retreat into my own little reality here and pray for everything to just go away.  unfortunately, it's not going away this time.

i called my neurologist yesterday and miraculously got an appointment for this coming tuesday.  i don't know how, but by some miracle, she had an opening.  the last time i saw her, she said she didn't feel it was necessary to keep chasing whatever it is that i have with MRIs, and that she'd consider doing an EMG on me once i got off of coumadin, but that was about all she could do at this point.  i don't know what i expect from her since doesn't seem too terribly concerned about me, but i feel like i need to get what's happening to me documented somewhere.  

i need to find another neurologist, i am afraid, but i just don't have the energy to embark on the search at this point.  she is my third one in 2 years.  maybe it's time to go to stanford.  i don't know.

anyway, that's where i'm at.  jibby, i look forward to hearing about your appointment this week, for sure.  and georgia, you must feel so proud of your husband!  that's the kind of stuff we are missing from our society these days, i believe.  there is a real lack of community anymore if you ask me, and that creates such a disconnect.  i am glad you were able to be a part of the recognition on memorial day.

blessings to you all,
binx

[jibjen]

Hi,

I am so glad you were able to rest and relax and make it through such a wonderful honor for your husband! Kudos to him for volunteering to help the community and those who are in need of help!

He deserves a BIG HUG! and so do you for being such a wonderful support!

Jibby

[geofran]

HI Jibby, All

I guess everyone is "hanging in there".  That's good.

An update on Memorial Day:  The night before I woke up at 2am with my neck and leg buzzing and vibrating.  I thought "oh no" not now.  Somehow I calmed myself and got back to sleep.  I didn't tell my husband because I was determined not to spoil his day.  Thankfully by morning it had lessened.  I drove him in the parade with no problems.  He was so happy.  They had magnetic signs for the car that said "Citizen of the Year" and his name.  It was a well deserved honor.  He has been working as a volunteer with our county government and FEMA  to do buyouts for flood prone homes and has helped so many people.

Sending good thoughts to All,
Georgia