Re: Carpal tunnel...of the whole arm????

[Guest guest]

,My heart goes out to you. I hope you will get an MRI of your cspine. I had lost all feeling and ability to move both my hands...it started on my left side. After seeing a bunch of morons, I finally found a doc that looked at my MRI HIMSELF [instead of just reading a report about it]. He found the massive sarc lesion that was cutting off my cerebral-spinal fluid, and 10 minutes later I was in the spinal ICU.Get yourself a real hands-on doc...it makes all the difference. I had 2 strokes because of the time it took for diagnosis...I was in 2 hospitals where the docs said everything from "it's inyour head," to "it's a migraine." DON'T give up. WE ARE ALL HERE FOR YOU!Love and happy thoughts, warm [pain free] hugs,Subject: Carpal tunnel...of the whole arm????To: Neurosarcoidosis Date: Tuesday, December 1, 2009, 3:41 PM

Hi all. I know you can't get carpal tunnel of the whole arm but then...what is happening to my arms then? I have seen my doctor twice, once he barely even said anything about it, the second time he finally sent me for nerve conduction studies...but I had to insist he do it. I will find out the results on Thurs.

I have had carpal tunnel for awhile and the last time I had the nc study done the dr said it wasn't too bad. Now...I know that they are worse, only thing is, I have pain all the way up into my shoulder, my elbows, my forearms, and even my biceps ache. Its no fun...and here I was just getting used to not being able to walk even less than before because I developed osteitus pubis (inflammation of the pelvic joint -yeah...there is a joint there!) and now I can barely do anything at all...I am so scared. Double bummer is...I am having even more trouble sleeping as I used to choke if I slept on my back, so I switched to my sides, and it got worse there...so I have now switched to sleeping on my stomach, my arms down by my sides and my face propped up so I don't get suffocated by the pillow. Again, I am scared. And sad. Because now I am losing even more of my life. This email took me 1/2 hr to

type...something I used to be able to do in minutes. I think the NS monster is winning this time

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[Guest guest]

, I'm in agreement with . She seems to know what she is talking about. I know it took almost three years of going downhill before my primary physician finally had specialists to see me; and that after I was to the point of almost blindness and struggling to walk. Only then was I immediately placed in the hospital for special tests and found do have Arnaud Chiari malformation of the brain. You need to continue pushing the issue and if need be, seek other physicians/specialists on your own! At any rate, keep us informed as to your progress; and may God bless you!

-Maye, Baltimore MD

To: Neurosarcoidosis Sent: Sat, December 5, 2009 5:25:24 PMSubject: Re: Carpal tunnel...of the whole arm????

,My heart goes out to you. I hope you will get an MRI of your cspine. I had lost all feeling and ability to move both my hands...it started on my left side. After seeing a bunch of morons, I finally found a doc that looked at my MRI HIMSELF [instead of just reading a report about it]. He found the massive sarc lesion that was cutting off my cerebral-spinal fluid, and 10 minutes later I was in the spinal ICU.Get yourself a real hands-on doc...it makes all the difference. I had 2 strokes because of the time it took for diagnosis... I was in 2 hospitals where the docs said everything from "it's inyour head," to "it's a migraine." DON'T give up. WE ARE ALL HERE FOR YOU!Love and happy thoughts, warm [pain free] hugs,

From: Wolowich <karenwolowich@ yahoo.com>Subject: Carpal tunnel...of the whole arm????To: Neurosarcoidosis@ yahoogroups. comDate: Tuesday, December 1, 2009, 3:41 PM

Hi all. I know you can't get carpal tunnel of the whole arm but then...what is happening to my arms then? I have seen my doctor twice, once he barely even said anything about it, the second time he finally sent me for nerve conduction studies...but I had to insist he do it. I will find out the results on Thurs.

I have had carpal tunnel for awhile and the last time I had the nc study done the dr said it wasn't too bad. Now...I know that they are worse, only thing is, I have pain all the way up into my shoulder, my elbows, my forearms, and even my biceps ache. Its no fun...and here I was just getting used to not being able to walk even less than before because I developed osteitus pubis (inflammation of the pelvic joint -yeah...there is a joint there!) and now I can barely do anything at all...I am so scared. Double bummer is...I am having even more trouble sleeping as I used to choke if I slept on my back, so I switched to my sides, and it got worse there...so I have now switched to sleeping on my stomach, my arms down by my sides and my face propped up so I don't get suffocated by the pillow. Again, I am scared. And sad. Because now I am losing even more of my life. This email took me 1/2 hr to

type...something I used to be able to do in minutes. I think the NS monster is winning this time

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

[Guest guest]

,

I live in Winnipeg. The reason I would like to go to s Hopkins is that I have spoken to other sarc sufferers on another site and it seems they have a lot of sarc specialists, including a neuro-sarc specialist, there. And, one of the sufferers also works there and can direct me who to see. Mayo is closer but having someone I sort of know actually at the hospital, then it might make it easier.

Where do you live?

From: Wolowich <karenwolowich@ yahoo.com>Subject: Carpal tunnel...of the whole arm????To: Neurosarcoidosis@ yahoogroups. comDate: Tuesday, December 1, 2009, 3:41 PM

Hi all. I know you can't get carpal tunnel of the whole arm but then...what is happening to my arms then? I have seen my doctor twice, once he barely even said anything about it, the second time he finally sent me for nerve conduction studies...but I had to insist he do it. I will find out the results on Thurs.

I have had carpal tunnel for awhile and the last time I had the nc study done the dr said it wasn't too bad. Now...I know that they are worse, only thing is, I have pain all the way up into my shoulder, my elbows, my forearms, and even my biceps ache. Its no fun...and here I was just getting used to not being able to walk even less than before because I developed osteitus pubis (inflammation of the pelvic joint -yeah...there is a joint there!) and now I can barely do anything at all...I am so scared. Double bummer is...I am having even more trouble sleeping as I used to choke if I slept on my back, so I switched to my sides, and it got worse there...so I have now switched to sleeping on my stomach, my arms down by my sides and my face propped up so I don't get suffocated by the pillow. Again, I am scared. And sad. Because now I am losing even more of my life. This email took me 1/2 hr to

type...something I used to be able to do in minutes. I think the NS monster is winning this time

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

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[Guest guest]

hey Marla,

My doctor has been trying different medications on me in the past 6 months. Currently I am on 3000 mg of gabapentin, 1,000 mg of sulphasalazine, 200 mg tridural, we stopped the cymbalta because the side effects were just too bad and then he tried carbamazepine...but that interupted my sleep even more so that one was stopped. I go again to the doctor tomorrow, hopefully my nerve conduction study tests will be there this time. I will post the results when I hear them tomorrow.

Take care

Hi all. I know you can't get carpal tunnel of the whole arm but then...what is happening to my arms then? I have seen my doctor twice, once he barely even said anything about it, the second time he finally sent me for nerve conduction studies...but I had to insist he do it. I will find out the results on Thurs.

I have had carpal tunnel for awhile and the last time I had the nc study done the dr said it wasn't too bad. Now...I know that they are worse, only thing is, I have pain all the way up into my shoulder, my elbows, my forearms, and even my biceps ache. Its no fun...and here I was just getting used to not being able to walk even less than before because I developed osteitus pubis (inflammation of the pelvic joint -yeah...there is a joint there!) and now I can barely do anything at all...I am so scared. Double bummer is...I am having even more trouble sleeping as I used to choke if I slept on my back, so I switched to my sides, and it got worse there...so I have now switched to sleeping on my stomach, my arms down by my sides and my face propped up so I don't get suffocated by the pillow. Again, I am scared. And sad. Because now I am losing even more of my life. This email took me 1/2 hr to

type...something I used to be able to do in minutes. I think the NS monster is winning this time

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail

[Guest guest]

I am not up on all my meds, but those sounds like meds treating the symptoms, not the disease, correct me if I'm wrong.  Like I'm on Plaquanil, and Remicade to stop the progression of the disease, it has even helped reduce some of the symptoms.  I use to use a cane, before Remicade, but don't need

it so much as my head is better, therefore my balance is better.  Again, I am not up to speed on all the drugs, but what drugs are you taking to actually attack the Sarcoid?    I am sorry you are going through this, there was a time, I needed help just to get of bed in the am.   May I pray for you?

Marla

 

hey Marla,

My doctor has been trying different medications on me in the past 6 months.  Currently I am on 3000 mg of gabapentin, 1,000 mg of sulphasalazine, 200 mg tridural, we stopped the cymbalta because the side effects were just too bad and then he tried carbamazepine...but that interupted my sleep even more so that one was stopped.  I go again to the doctor tomorrow, hopefully my nerve conduction study tests will be there this time.  I will post the results when I hear them tomorrow.

Take care

 

Hi all.  I know you can't get carpal tunnel of the whole arm but then...what is happening to my arms then?  I have seen my doctor twice, once he barely even said anything about it, the second time he finally sent me for nerve conduction studies...but I had to insist he do it.  I will find out the results on Thurs.

I have had carpal tunnel for awhile and the last time I had the nc study done the dr said it wasn't too bad.  Now...I know that they are worse, only thing is, I have pain all the way up into my shoulder, my elbows, my forearms, and even my biceps ache.  Its no fun...and here I was just getting used to not being able to walk even less than before  because I developed osteitus pubis (inflammation of the pelvic joint -yeah...there is a joint there!) and now I can barely do anything at all...I am so scared.  Double bummer is...I am having even more trouble sleeping as I used to choke if I slept on my back, so I switched to my sides, and it got worse there...so I have now switched to sleeping on my stomach, my arms down by my sides and my face propped up so I don't get suffocated by the pillow.  Again, I am scared.  And sad.  Because now I am losing even more of my life.  This email took me 1/2 hr to

type...something I used to be able to do in minutes.  I think the NS monster is winning this time

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail