Re: settling down

April 20, 2011

Chris

It's great to hear that things are settling down for you. As for the lumbar

puncture I can tell you that they hurt like hell. I had one when I was 7 years

old(almost 30 years ago)and remember it well and that is saying something

because I was semi-comatose when they did it. That aside my fiancee did have one

a few months ago and it went well hard for him to keep still because he does

have some pretty severe twitching and of course it was painful but it went well.

He is actually going to be having a multi-point lumbarpuncture in just a few

weeks going up his whole spine that one is really going to be a challange as

they have told him it will take quite some time I hope they can sedate him

lightly for it.

Sorry I got off a bit there...

Anyway I'm very glad that things are looking up for you and hope this trend

continues.

JoDee

>

> hi all

>

> just wanted to send a little update - believe it or not, my headaches were

> probably caused by the fact that my blood pressure had suddenly gone

> whacky. after a week full of PCP visits & measuring my bp @ 140/90, i

> finally had had enough and went to the emergency room two days ago, and they

> measured it at 178/103. got some basic blood pressure meds now, my bp is

> textbook normal, and the headaches are 80% gone. so there is some good

> news.

>

> the vertigo, the light-headedness (i've stopped calling it dizziness,

> because i haven't fallen over even once yet) and the foggy - can't - quite -

> concentrate feeling are still with me, but they're a little better. we

> continue to work on this, and we're giving the bp meds a few days to see if

> these feelings get any better.

>

> had some good conversations with my PCP, he has told me that he would

> support any efforts toward getting disability. i didn't even have to ask,

> he volunteered it. he suggests i look into part-time work, if i think i can

> handle it, and if i do, that'll lower my income & i'll finally qualify for

> all those assistance programs that have recently turned me away. the

> irony...

>

> i found a good neurologist locally who knows sarcoid (i still thank you

> JoDee!) and we're looking into the other symptoms - the new numbness on my

> hands, and the tingling on my face & on my tongue. i'm going in for a

> lumbar puncture next week - would love to hear of anyone's experience with

> that.

>

> one last time, my thanks for all the help and recommendations and advice,

> and patience through my little panic attacks. Connie, i may have some

> questions for you in the near future!

>

> chris

>

April 20, 2011

Glad to hear things are getting better for you. I had only one lumbar puncture with NO problems at all, even got and went to lunch, but it's not the same for everyone. Good luck on that. I have the tingling and numbness with my hands, the worse is the left side of my face, it's awful, and not anything with my tongue, though I bite the inside of my mouth a lot.

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

hi all

just wanted to send a little update - believe it or not, my headaches were probably caused by the fact that my blood pressure had suddenly gone whacky. after a week full of PCP visits & measuring my bp @ 140/90, i finally had had enough and went to the emergency room two days ago, and they measured it at 178/103. got some basic blood pressure meds now, my bp is textbook normal, and the headaches are 80% gone. so there is some good news.

the vertigo, the light-headedness (i've stopped calling it dizziness, because i haven't fallen over even once yet) and the foggy - can't - quite - concentrate feeling are still with me, but they're a little better. we continue to work on this, and we're giving the bp meds a few days to see if these feelings get any better.

had some good conversations with my PCP, he has told me that he would support any efforts toward getting disability. i didn't even have to ask, he volunteered it. he suggests i look into part-time work, if i think i can handle it, and if i do, that'll lower my income & i'll finally qualify for all those assistance programs that have recently turned me away. the irony...

i found a good neurologist locally who knows sarcoid (i still thank you JoDee!) and we're looking into the other symptoms - the new numbness on my hands, and the tingling on my face & on my tongue. i'm going in for a lumbar puncture next week - would love to hear of anyone's experience with that.

one last time, my thanks for all the help and recommendations and advice, and patience through my little panic attacks. Connie, i may have some questions for you in the near future!

chris

April 20, 2011

When you get ready, ask away. I'll be glad to help

To: Neurosarcoidosis Sent: Wed, April 20, 2011 7:11:33 PMSubject: settling down

hi all

just wanted to send a little update - believe it or not, my headaches were probably caused by the fact that my blood pressure had suddenly gone whacky. after a week full of PCP visits & measuring my bp @ 140/90, i finally had had enough and went to the emergency room two days ago, and they measured it at 178/103. got some basic blood pressure meds now, my bp is textbook normal, and the headaches are 80% gone. so there is some good news.

the vertigo, the light-headedness (i've stopped calling it dizziness, because i haven't fallen over even once yet) and the foggy - can't - quite - concentrate feeling are still with me, but they're a little better. we continue to work on this, and we're giving the bp meds a few days to see if these feelings get any better.

had some good conversations with my PCP, he has told me that he would support any efforts toward getting disability. i didn't even have to ask, he volunteered it. he suggests i look into part-time work, if i think i can handle it, and if i do, that'll lower my income & i'll finally qualify for all those assistance programs that have recently turned me away. the irony...

i found a good neurologist locally who knows sarcoid (i still thank you JoDee!) and we're looking into the other symptoms - the new numbness on my hands, and the tingling on my face & on my tongue. i'm going in for a lumbar puncture next week - would love to hear of anyone's experience with that.

one last time, my thanks for all the help and recommendations and advice, and patience through my little panic attacks. Connie, i may have some questions for you in the near future!

chris

April 21, 2011

settling down

hi all

just wanted to send a little update - believe it or not, my headaches were probably caused by the fact that my blood pressure had suddenly gone whacky. after a week full of PCP visits & measuring my bp @ 140/90, i finally had had enough and went to the emergency room two days ago, and they measured it at 178/103. got some basic blood pressure meds now, my bp is textbook normal, and the headaches are 80% gone. so there is some good news.

the vertigo, the light-headedness (i've stopped calling it dizziness, because i haven't fallen over even once yet) and the foggy - can't - quite - concentrate feeling are still with me, but they're a little better. we continue to work on this, and we're giving the bp meds a few days to see if these feelings get any better.

had some good conversations with my PCP, he has told me that he would support any efforts toward getting disability. i didn't even have to ask, he volunteered it. he suggests i look into part-time work, if i think i can handle it, and if i do, that'll lower my income & i'll finally qualify for all those assistance programs that have recently turned me away. the irony...

i found a good neurologist locally who knows sarcoid (i still thank you JoDee!) and we're looking into the other symptoms - the new numbness on my hands, and the tingling on my face & on my tongue. i'm going in for a lumbar puncture next week - would love to hear of anyone's experience with that.

one last time, my thanks for all the help and recommendations and advice, and patience through my little panic attacks. Connie, i may have some questions for you in the near future!

chris

April 21, 2011

Re. lumbar punctures ... I had 2 in hospital five years ago (when I had a 6th

nerve palsy - prob from neuro-sarc, but wasn't dxed at the time), which were

truly awful. The first one was with a Resident (ie trainee) neurologist, and I

nearly passed out, and it didn't work at all. The second one was done by a much

more experienced doctor, using ultrasound guidance, and was easier, but still no

picnic - my *husband* nearly passed out just watching, LOL. I tended to go into

shock a bit, shaking all over, that kind of thing. Listening to LOUD music on

your iPod during the procedure can help ...

But I had another one during my last stay in hospital (Sept last year) and it

was done amazingly well and skilfully. I barely felt a thing (and it finally

gave some positive test results too). So the skill and experience of the person

doing it is the biggest factor!

My main advice is don't let a trainee loose on your spine!! And make sure you

lie down for a good few hours afterwards (they'll probably give you this advice

anyway), it helps to reduce the headache that is common afterwards.

Good luck!

xo

> Chris

> It's great to hear that things are settling down for you. As for the lumbar