SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Follow up with doc
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
515 members
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Follow up with doc

Hey all...I had a follow up appt. with doc...MRI came back with no new lesions...YAHOO..He was happy and happy to see me and reporting doing well with Avonex! He wrote another script for auto injector...so I will be getting that soon...

For some reason I am hearing MS everything , everywhere....while if it is not Jack Osbourne's news with Dx. it is a show with celebrities dx. with MS

funny it seems to be more prominently discussed and known when it IS infact what is "ailing" you...hmmmmm


I was on vacation this week, well sort of...went to a meeting on friday so yeah I had 1 day of work....I hit the beach most of the time..but was not too silly as it was SOOOOOOO humid and it did play havoc on me...I tried to stay cool and enjoy when and as much as it could allow me....

Love you all.

Jibby
7 Comments
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956292_tn?1334058469
Forgot to ention he said I would not need another MRI unless he sees or feels something is brewing.....

I can save a few bucks now until then :O)
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Hi jibby what wonderful news for you. Woo hoo.

I am so pleased things are finally turning around well at least staying stable for now.

Oh no dont get me started on Jack Osbourne and his MS lol. IF YOU HAVE MONEY you get a diagnosis on one episode of problems with your sight and a few other minor things lol. Jack Osbourne has MS, it has been over ever TV programme and news channel in the UK, blah blah blah.

So do over 100,000 other UK residents, and 50 to 60 of them are being diagnosed every week.

Give us a break lol.

The thing is with him though he was making it out to be easy to control and has no real problems, and after a relapse you are totally well until the next episode. Yeh right .... we wish lol.

Its good that MS is in the news, but to me the new MS seems to be Lymes lol. I hadnt realised how many people are being diagnosed with Lymes and it is almost epidemic proportions now.

Anyway you keep getting better and enjoy the beach your so lucky i would love to sit on hot sand and just put my toes in the water. bliss.

Big hugs Maria
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2012515_tn?1353879125
Jibby,
I'm glad your appt went well and Praise God no new lesions.:)
I wish you the best with the new med, hopefully you'll adjust well to it!

Be sure to take care of yourself and I'm happy that you don't have to spend extra $$$ on any mri's in the near future. YIIPPEEE!

Hugs and blessings,
Tammy:)
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956292_tn?1334058469
Hi sweetie,

Thanks so much for your well wishes! I appreciate it!

I am glad...I am hoping to get started on my Avonex Auto injector pen too

easy beans!

jibs
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Jibby!!!  I have been using the auto-injector for about 5 or 6 cycles now. I LOVE IT! The pain is at worst about the same but seems to be better truthfully ----mostly, it saves the "mental anguish" I experience with giving myself a shot. MUCH EASIER! YAY!

I am happy to report my only continued side affects are skin sensitivity (feels like sand paper is rubbing my skin) and a temperature intermittenly w/ body aches BUT as long as I take 800mg when I give myself the shot and drink my fluids I seem to be just fine. (I had a bad night this last weekend but I didn't medicate or drink my fluids. Bad bad Barb.)

I am so very glad to hear there are no new lesions this MRI. Are you feeling okay as well? No new flares? I am still flaring a bit but had felt improvement from last year so I'll take it. How long does it take for Avonex to work? Do you know?

XOXO
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Hi sweetie,

I am so glad to hear the auto injecter is better...excited to start...I did the same thing as you and was naughty one night..forgot meds and little fluids and felt like crap...never do that again!

I have been so, so....I feel better...knock on wood..the heat has been tough but I know what to do for that...

I am trying to take it easy...took last shot with syringe last night and feel a little warm with a headache now but will take some Aleve to keep it at bay..usually works...

I do not know about your last question...did not ask when he said no knew lesions...he seemed happy and so was I so I guess I am where I need to be..Is it the med or my MS is sleeping?  either way? I will take it.

I have to say I am going to make an eye appt. because my left eye is still a bother off and on....although MRI did not show anything....

I ran into my long lost friend the other day at grocery store....She has MS, 14 years now but we had lost touch because she had moved away and life got in the way....She just finished radiation for breast cancer....We were talking and she was amzed with my dx....but she said she was sticking with me this time and she is glad we found each other again...I am too as I tried to look for her a thousand times....

We are going to get together...I feel good I have her here with me to reach out to here in the physcial world....LOL..

I have to go to work..That is a different story..LOL

Love you and glad you are doing well..

Jenny
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1760800_tn?1337789449
YEAH!  Good news  I love it!  It is so nice to hear positive thing happening for you!  You will love the auto-inject it is great.  And no new lesions means that the Avonex is working.

It is great to hear that you made contact with a long lost friend and wow she has ms too -  It is true what Maria said once you have a dx it is amazing how many other people you hear out there that have it too.  I wear my bioness and with the warm weather have skirts on more.  The woman who parks next to me at work stopped me to ask about it and why did I wear it.  When I told her she said me too - since 2000! Funny how life is,

I did the same thing as you and Barb with the little fluids and no meds before a shot!  You definitely pay for it!  I had a headache to beat the band!!!!

My MS appears to be laying low right now other than pseudo flares when I overdo it in the heat!  

Again - so glad to hear good news - take care and don't let work get to you!~

Love you and talk to you soon
Tracy
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