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

[Guest guest]

Thank you everyone for your support. I will absolutely let you all know what the doc says on Thurs. We are working to get me seen by a doctor at s Hopkins...I can't wait for that day. Until then, I will muddle through...thank you again Every day I thank God for the internet. How alone NS sufferers must have been before it was invented.

from Canada

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!

Ask a question on any topic and get answers from real people. Go to Yahoo! Answers.

[Guest guest]

Hi ,

I know too well the whole arm numbness issue-- evn as I sit here this morning, my hands are numb-- and my blood sugar is only 139--- high, but not that bad.

For me, it has been in part diabetic neuropathy, but that is only PARTLY too blame. The other part is that I am not getting enough oxygen circulating to my extremities- so I know that if I go get on my oxygen-- that ALOT of the extremity numbness clears up-- if I'm not using it (right now, I'm not) that this is an issue.

When we don't have enough oxygen or are anemic-- so that we have low red blood cell counts (the red cells carry the o2 thru the body) our body goes into survival mode. It has to keep our vital organs alive, so it cuts back what it is sending out to the extremities.

Try this:

Exhale fully-- like they ask you to do during a pulmonary function test. (PFT).

Inhale deeply and exhale fully again-- do this several times-- and see if as you get the carbon dioxide out of the lungs--- and get more clean air in-- if this doesn't help that numbness.

If it does-- then you need to bring this up with your pulmonologist. This is a VITAL CLUE that you aren't clearing out your lungs of carbon dioxide, and even though the PFT's may show decreased lung volume, but when corrected for the total lung volume (the part of functional lung that is actually working) that it shows that "you're fine"-- they have to look at the DLCO (Diffuse Lung Capacity Oxygenation) without correction. For those of us with ROPD -Restrictive Obstructive Pulmonary Disease, we don't clear our lungs on each breath. That stagnant air is just laying there, taking up the much needed space to get that extra oxygen to our extremities.

For those of us with Stage 2 or 3 or 4 of pulmonary sarcoidosis-- we may need supplemental oxygen to help this-- even just sitting around the house.

Learning to breath correctly and deeply helps, but since our lungs and lung cages (ribs) are so stiffened and scarred from the granulomas, we revert back to shallow breathing.

Most pulmonologists look at the corrected lung volume-- for instance, you have 70% of your lungs working, but if they adjust the PFT numbers to show that 30% loss, then it is possible for them to tell you that the lungs are doing what they should do -- and that everything is in range when you take in the fact you've lost 30% of your lung capacity. They forget to look at the DLCO-- and if it's taken a hit-- and you are short (I'm at 60% of what healthy lungs should be) then there is not enough lung surface to keep my vital organs working without causing numbness in my arms and legs and feet and hands.

The other issue is that anemia and/or dehydration cuts back the number of blood cells capable of getting that oxygen to your extremities. Again, it's the bodies way of keeping the vital organs alive -- at the sacrifice of our extremities.

Hope this helps,== and do print it out and take it with you to your MD-- and discuss it. They may blow you off (they're still breathing fully- sorry, a touch of satire) but if they will seriously look at this-- from this angle, you won't have to suffer as you are!

Blessings,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Tue, December 1, 2009 10:57:52 AMSubject: Re: Carpal tunnel...of the whole arm????

HI KAREN,I AM SORRY THAT ARE HURTING SO MUCH.I WANT TO ENCOURAGE YOU TO HOLD ON AND TRY TO BE AS STRONG AS YOU CAN.WHEN YOU CAN'T HOLD ON THAT IS WHAT WE ARE HERE FOR TO HOLD YOU UP,TO LIFT YOU UP IN PRAYER,TO ENCOURAGE YOU AND TO TELL YOU BETTER DAYS ARE COMING.DON'T LET THE SARC MONSTER WIN.YOU CAN MAKE IT.I WILL PRAY FOR YOU TO GET RELIEF FROM YOU PAIN AND I WILL THAT YOU BE GIVEN STRENGTH TO ENDURE AND HOLD ON.DON'T BE AFRAID.GOD CAN GIVE YOU COMFORT LIKE NO OTHER.

HELEN

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]

Lack of interest to me says (See another doctor)

YES!!!!

To: Neurosarcoidosis Sent: Tue, December 1, 2009 11:27:53 AMSubject: Re: Carpal tunnel...of the whole arm????

Darlene/ and anyone else.. I had the same problem With Carpal Tunnel, but I had it in both wrist.. They did the surgical release on both hands at the same time, but I had to tell him, I wanted that way, or else I would have had to come back a 2nd and 3rd time for the other side. It was such a relief to get that problem fixed.

Darlene, did you report the Neurologist behavior and diagnosis? IF not you need to and ask to see a different one for a second consult..Sometimes they get a little stupid.. I had a neurologist that took both his knuckles and pressed as hard as he could into my groin, he was trying to show me that I just had arthritis.. and of course it hurt like the dickens.. then I spoke up telling him, that I was sure I had arthritis in my hips, but that I also have a pinched nerve at L1 and L2 (Lumbar spine).. and that I had a MRI to prove it.. He just looked at me and said well then, I guess that would cause a problem in that area.. I asked if I should come back or not, he said that was up to me, I could if I wanted to.. Lack of interest to me says (See another doctor)

Long story sorry,

I hope you guys have a great day

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

Hi ,

I am having the same type of carpal tunnel problem that you have! It tingles and hurts from my finger tips clear up my arm, into my shoulder, and across my back sometimes... .

my family doctor sent me to a Neurologist where I had a bad experience.. ..... when I got to his office, I had to wait in that little room forever and when he came in, he did not introduce himself, say "hi", or anything! He went right over to his chair, sat down, opened my folder, yawned great big and said, "So, why are you here?"! Honest, that is what happened and my

husband was with me. I told the Doctor about my arm and he looked at it, felt of it, for about 2 seconds and said, "You MIGHT have carpal tunnel, but if you do, it is not bad enough to treat"!! I could not believe my ears........ he said he did not see much wrong. So we left and I have been just putting up with it... it hurts so bad sometimes and it keeps me awake at night.

So.......... yes, I understand what you are talking about and what you are going through. However, I have no advice right now as I don't know what to do either...... ...

Hang in there, maybe someone else as some ideas that will benefit both of us.....

Hugs,

Darlene

NS Co-Owner/Moderator

[Guest guest]

,

I'm sorry I started to read your message but I'm in NY because my mother had to have surgery and turns out has lung cancer and had to have half her lung removed.

i am an expert in Carpel Tunnel and have never had to send 1 patient for surgery in 21 years in practice, I somehow lost your message. if you want send me exactly what's going on and i will try and help you anyway i can.

mitch

[Guest guest]

hi Tracie, i tried your deep breathing and that led to a lot of spasms of the face. i also had some tingling and breathlessness. i have stage one the last i knew! i feel better but i definitely know that there is a correlation with my breathing and oxygen (or lack of i should say!) To: Neurosarcoidosis Sent: Tue, December 1, 2009 2:55:15 PMSubject: Re: Carpal tunnel...of the whole arm????

Hi ,

I know too well the whole arm numbness issue-- evn as I sit here this morning, my hands are numb-- and my blood sugar is only 139--- high, but not that bad.

For me, it has been in part diabetic neuropathy, but that is only PARTLY too blame. The other part is that I am not getting enough oxygen circulating to my extremities- so I know that if I go get on my oxygen-- that ALOT of the extremity numbness clears up-- if I'm not using it (right now, I'm not) that this is an issue.

When we don't have enough oxygen or are anemic-- so that we have low red blood cell counts (the red cells carry the o2 thru the body) our body goes into survival mode. It has to keep our vital organs alive, so it cuts back what it is sending out to the extremities.

Try this:

Exhale fully-- like they ask you to do during a pulmonary function test. (PFT).

Inhale deeply and exhale fully again-- do this several times-- and see if as you get the carbon dioxide out of the lungs--- and get more clean air in-- if this doesn't help that numbness.

If it does-- then you need to bring this up with your pulmonologist. This is a VITAL CLUE that you aren't clearing out your lungs of carbon dioxide, and even though the PFT's may show decreased lung volume, but when corrected for the total lung volume (the part of functional lung that is actually working) that it shows that "you're fine"-- they have to look at the DLCO (Diffuse Lung Capacity Oxygenation) without correction. For those of us with ROPD -Restrictive Obstructive Pulmonary Disease, we don't clear our lungs on each breath. That stagnant air is just laying there, taking up the much needed space to get that extra oxygen to our extremities.

For those of us with Stage 2 or 3 or 4 of pulmonary sarcoidosis- - we may need supplemental oxygen to help this-- even just sitting around the house.

Learning to breath correctly and deeply helps, but since our lungs and lung cages (ribs) are so stiffened and scarred from the granulomas, we revert back to shallow breathing.

Most pulmonologists look at the corrected lung volume-- for instance, you have 70% of your lungs working, but if they adjust the PFT numbers to show that 30% loss, then it is possible for them to tell you that the lungs are doing what they should do -- and that everything is in range when you take in the fact you've lost 30% of your lung capacity. They forget to look at the DLCO-- and if it's taken a hit-- and you are short (I'm at 60% of what healthy lungs should be) then there is not enough lung surface to keep my vital organs working without causing numbness in my arms and legs and feet and hands.

The other issue is that anemia and/or dehydration cuts back the number of blood cells capable of getting that oxygen to your extremities. Again, it's the bodies way of keeping the vital organs alive -- at the sacrifice of our extremities.

Hope this helps,== and do print it out and take it with you to your MD-- and discuss it. They may blow you off (they're still breathing fully- sorry, a touch of satire) but if they will seriously look at this-- from this angle, you won't have to suffer as you are!

Blessings,

Tracie

NS Co-owner/moderator

From: Helen <hmwalker9 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Tue, December 1, 2009 10:57:52 AMSubject: Re: Carpal tunnel...of the whole arm????

HI KAREN,I AM SORRY THAT ARE HURTING SO MUCH.I WANT TO ENCOURAGE YOU TO HOLD ON AND TRY TO BE AS STRONG AS YOU CAN.WHEN YOU CAN'T HOLD ON THAT IS WHAT WE ARE HERE FOR TO HOLD YOU UP,TO LIFT YOU UP IN PRAYER,TO ENCOURAGE YOU AND TO TELL YOU BETTER DAYS ARE COMING.DON'T LET THE SARC MONSTER WIN.YOU CAN MAKE IT.I WILL PRAY FOR YOU TO GET RELIEF FROM YOU PAIN AND I WILL THAT YOU BE GIVEN STRENGTH TO ENDURE AND HOLD ON.DON'T BE AFRAID.GOD CAN GIVE YOU COMFORT LIKE NO OTHER.

HELEN

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]



Are there many people from Canada in this group? We are too.

, would you mind telling me what city you are in? Would love to communicate with you outside the group to understand what your experience has been like trying to get treatment here.

Is there a reason you're trying to get to s Hopkins instead of Mayo or Cleveland Clinic?

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!

Ask a question on any topic and get answers from real people. Go to Yahoo! Answers.

[Guest guest]

Barbara,

The tingling and breathlessness would happen if you do this too fast. It's a full, slow exhale, and a slow complete inhale. If you go too fast, you hyperventilate--- hence the "tingling and breathlessness."

Do you have some 7th nerve palsy, aka Bells Palsy? That can get those facial muscles spasming also. I'm 90% sure that what happened is hyperventilation-- which, btw, is also what happens when we breath shallowly-- and don't empty our lungs.

The effect is the tingling of extremities and numbness-- as well as dizziness.

Just a thought,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Tue, December 1, 2009 3:03:13 PMSubject: Re: Carpal tunnel...of the whole arm????

hi Tracie, i tried your deep breathing and that led to a lot of spasms of the face. i also had some tingling and breathlessness. i have stage one the last i knew! i feel better but i definitely know that there is a correlation with my breathing and oxygen (or lack of i should say!)

From: tracie feldhaus <tiodaat2001@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Tue, December 1, 2009 2:55:15 PMSubject: Re: Carpal tunnel...of the whole arm????

Hi ,

I know too well the whole arm numbness issue-- evn as I sit here this morning, my hands are numb-- and my blood sugar is only 139--- high, but not that bad.

For me, it has been in part diabetic neuropathy, but that is only PARTLY too blame. The other part is that I am not getting enough oxygen circulating to my extremities- so I know that if I go get on my oxygen-- that ALOT of the extremity numbness clears up-- if I'm not using it (right now, I'm not) that this is an issue.

When we don't have enough oxygen or are anemic-- so that we have low red blood cell counts (the red cells carry the o2 thru the body) our body goes into survival mode. It has to keep our vital organs alive, so it cuts back what it is sending out to the extremities.

Try this:

Exhale fully-- like they ask you to do during a pulmonary function test. (PFT).

Inhale deeply and exhale fully again-- do this several times-- and see if as you get the carbon dioxide out of the lungs--- and get more clean air in-- if this doesn't help that numbness.

If it does-- then you need to bring this up with your pulmonologist. This is a VITAL CLUE that you aren't clearing out your lungs of carbon dioxide, and even though the PFT's may show decreased lung volume, but when corrected for the total lung volume (the part of functional lung that is actually working) that it shows that "you're fine"-- they have to look at the DLCO (Diffuse Lung Capacity Oxygenation) without correction. For those of us with ROPD -Restrictive Obstructive Pulmonary Disease, we don't clear our lungs on each breath. That stagnant air is just laying there, taking up the much needed space to get that extra oxygen to our extremities.

For those of us with Stage 2 or 3 or 4 of pulmonary sarcoidosis- - we may need supplemental oxygen to help this-- even just sitting around the house.

Learning to breath correctly and deeply helps, but since our lungs and lung cages (ribs) are so stiffened and scarred from the granulomas, we revert back to shallow breathing.

Most pulmonologists look at the corrected lung volume-- for instance, you have 70% of your lungs working, but if they adjust the PFT numbers to show that 30% loss, then it is possible for them to tell you that the lungs are doing what they should do -- and that everything is in range when you take in the fact you've lost 30% of your lung capacity. They forget to look at the DLCO-- and if it's taken a hit-- and you are short (I'm at 60% of what healthy lungs should be) then there is not enough lung surface to keep my vital organs working without causing numbness in my arms and legs and feet and hands.

The other issue is that anemia and/or dehydration cuts back the number of blood cells capable of getting that oxygen to your extremities. Again, it's the bodies way of keeping the vital organs alive -- at the sacrifice of our extremities.

Hope this helps,== and do print it out and take it with you to your MD-- and discuss it. They may blow you off (they're still breathing fully- sorry, a touch of satire) but if they will seriously look at this-- from this angle, you won't have to suffer as you are!

Blessings,

Tracie

NS Co-owner/moderator

From: Helen <hmwalker9 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Tue, December 1, 2009 10:57:52 AMSubject: Re: Carpal tunnel...of the whole arm????

HI KAREN,I AM SORRY THAT ARE HURTING SO MUCH.I WANT TO ENCOURAGE YOU TO HOLD ON AND TRY TO BE AS STRONG AS YOU CAN.WHEN YOU CAN'T HOLD ON THAT IS WHAT WE ARE HERE FOR TO HOLD YOU UP,TO LIFT YOU UP IN PRAYER,TO ENCOURAGE YOU AND TO TELL YOU BETTER DAYS ARE COMING.DON'T LET THE SARC MONSTER WIN.YOU CAN MAKE IT.I WILL PRAY FOR YOU TO GET RELIEF FROM YOU PAIN AND I WILL THAT YOU BE GIVEN STRENGTH TO ENDURE AND HOLD ON.DON'T BE AFRAID.GOD CAN GIVE YOU COMFORT LIKE NO OTHER.

HELEN

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]

, what medications are you on, maybe it's time to do some adjusting of meds. we don't need to give into the Sarc monster, we always have to keep on doing what ever we can, I have pain like that too, and I know it's the NS, it comes and goes. right now the pain in my hips and legs doesn't allow me much time to sit and type, so I have to get up and down, can't sit long, or stand long, etc. but I just keep moving.  I have trouble walking to far too, in fact I can't I take my wheelchair with me where ever I go.  Hang in there, and talk to your doc about

doing something different with your meds.  Marla

 

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 to take plaqunil but I am also on Methotrexate and predisone. It helps me I seem to be doing pretty good. I use a walker but hey once I couldn't walk at all.

Thoughts are with you for some relief.

Jackie

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

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

[Guest guest]

Marla,

Thank you for praying for me. I believe all the drugs I am on are just "bandaid" drugs...that is why I want to go to s Hopkins so that they can devise a treatment plan for me...I would be thrilled not to have to use a cane. Apparently, the doctor thinks that is why I have developed mild-severe carpal tunnel. And of course, my doctor didn't think to suggest ways to treat my arm...I think he is tired of hearing me complain about all my pain

Guess I will have to wait until my next visit with my new neurologist in Jan.

I will just wait here...in pain...and losing my mind. I am getting soooo forgetful. I hate it. I feel like such a fool sometimes.

But God doesn't give us more than we can handle...I am just so afraid of anything else happening...I only have my left arm that is ok...I am running out of body parts for the sarcoid monster to consume.

I will bring up those drugs (remicade etc) when I see my doctor next.

Take care and thank you again for the prayers.

from the centre of Canada

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]

Hi Matt. I am so sorry to hear about your Mom. My Mom also had lung cancer

however surgery was not an option for her and we lost her last April after a

very hard struggle for 23 months. I will say a prayer for your Mom.

As for my carpal tunnel, the nerve conduction study I had done identified it as

the problem. Mild to severe carpal tunnel in my right hand and mild in my left.

My family doctor said that surgery would not be performed unless it progressed

to severe. I do not want surgery. However my family doctor neglected to

suggest any treatment options. I will be seeing my new neurologist in Jan,

perhaps he will give me guidance.

If there is anything you can suggest in the meantime Matt, I would appreciate

any help.

Take care,

from the centre of Canada

>

>

> ,

>

> I'm sorry I started to read your message but I'm in NY because my mother had

to have surgery and turns out has lung cancer and had to have half her lung

removed.

>

> i am an expert in Carpel Tunnel and have never had to send 1 patient for

surgery in 21 years in practice, I somehow lost your message. if you want send

me exactly what's going on and i will try and help you anyway i can.

>

> mitch

>

[Guest guest]

Good luck with your appointment, I will continue to pray for you.

Marla

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

Marla,

Thank you for praying for me.  I believe all the drugs I am on are just

" bandaid " drugs...that is why I want to go to s Hopkins so that they can

devise a treatment plan for me...I would be thrilled not to have to use a cane. 

Apparently, the doctor thinks that is why I have developed mild-severe carpal

tunnel.  And of course, my doctor didn't think to suggest ways to treat my

arm...I think he is tired of hearing me complain about all my pain

Guess I will have to wait until my next visit with my new neurologist in Jan. 

I will just wait here...in pain...and losing my  mind.  I am getting soooo

forgetful.  I hate it.  I feel like such a fool sometimes. 

But God doesn't give us more than we can handle...I am just so afraid of

anything else happening...I only have my left arm that is ok...I am running out

of body parts for the sarcoid monster to consume.

I will bring up those drugs (remicade etc) when I see my doctor next. 

Take care and thank you again for the prayers. 

from the centre of Canada

 

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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with the All-new Yahoo! Mail

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[Guest guest]

karen,

i've been walked on a lot in my life, but it's Mitch not Matt lol. I am a Chiropractor, i have been in practice for 21 years and 4 years clinical residency before that. i have never sent 1 that's right "ONE" patient for CT surgery. You need to find a Chiropractor in your area, ask if they do 'extremities' if they do go. I have treated over a thousand people with CTS and not one person sent to surgery and each of them leads a normal painfree life. If is one of the easiest things in the world to fix. if you need help finding someone just ask. i will explain more when i have a minute, just got back from ny (my Mom got her stitches out)

Thank you for askng about my Mom, I'm so sorry about your's I lost my Dad to NHL 3.5 years ago

Mitch

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

Hi Matt. I am so sorry to hear about your Mom. My Mom also had lung cancer however surgery was not an option for her and we lost her last April after a very hard struggle for 23 months. I will say a prayer for your Mom.

As for my carpal tunnel, the nerve conduction study I had done identified it as the problem. Mild to severe carpal tunnel in my right hand and mild in my left. My family doctor said that surgery would not be performed unless it progressed to severe. I do not want surgery. However my family doctor neglected to suggest any treatment options. I will be seeing my new neurologist in Jan, perhaps he will give me guidance.

If there is anything you can suggest in the meantime Matt, I would appreciate any help.

Take care,

from the centre of Canada

>

>

> ,

>

> I'm sorry I started to read your message but I'm in NY because my mother had to have surgery and turns out has lung cancer and had to have half her lung removed.

>

> i am an expert in Carpel Tunnel and have never had to send 1 patient for surgery in 21 years in practice, I somehow lost your message. if you want send me exactly what's going on and i will try and help you anyway i can.

>

> mitch

>

[Guest guest]

OMG Mitch...sorry about the name mix up....I totally thought you were a Mitch so I have no clue why I said Matt! Must have had my nephew on my mind. Anyway. I do have a good friend who is a chiropractor and I will chat with him as soon as the holidays are over. Thanks for your input and your Mom is lucky having a son like you. Thanks again! Happy holidays!

Subject: Re: Re: Carpal tunnel...of the whole arm????To: Neurosarcoidosis Received: Thursday, December 17, 2009, 12:38 AM

karen,

i've been walked on a lot in my life, but it's Mitch not Matt lol. I am a Chiropractor, i have been in practice for 21 years and 4 years clinical residency before that. i have never sent 1 that's right "ONE" patient for CT surgery. You need to find a Chiropractor in your area, ask if they do 'extremities' if they do go. I have treated over a thousand people with CTS and not one person sent to surgery and each of them leads a normal painfree life. If is one of the easiest things in the world to fix. if you need help finding someone just ask. i will explain more when i have a minute, just got back from ny (my Mom got her stitches out)

Thank you for askng about my Mom, I'm so sorry about your's I lost my Dad to NHL 3.5 years ago

Mitch

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

Hi Matt. I am so sorry to hear about your Mom. My Mom also had lung cancer however surgery was not an option for her and we lost her last April after a very hard struggle for 23 months. I will say a prayer for your Mom.As for my carpal tunnel, the nerve conduction study I had done identified it as the problem. Mild to severe carpal tunnel in my right hand and mild in my left. My family doctor said that surgery would not be performed unless it progressed to severe. I do not want surgery. However my family doctor neglected to suggest any treatment options. I will be seeing my new neurologist in Jan, perhaps he will give me guidance.If there is anything you can suggest in the meantime Matt, I would appreciate any help. Take care, from the centre of Canada>> > ,> > I'm sorry I started to read your message but I'm in NY because my mother had to have surgery and turns out has lung cancer and had to have half her lung removed. > > i am an expert in Carpel Tunnel and have never had to send 1 patient for surgery in 21 years in practice, I somehow lost your message. if you want send me exactly what's going on and i will try and help you anyway i can.> > mitch>

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[Guest guest]

If you need me to talk to him to make sure he does what yu need I would be happy to. Don't worry about the name I've been called worse (much worse)

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

Hi Matt. I am so sorry to hear about your Mom. My Mom also had lung cancer however surgery was not an option for her and we lost her last April after a very hard struggle for 23 months. I will say a prayer for your Mom.

As for my carpal tunnel, the nerve conduction study I had done identified it as the problem. Mild to severe carpal tunnel in my right hand and mild in my left. My family doctor said that surgery would not be performed unless it progressed to severe. I do not want surgery. However my family doctor neglected to suggest any treatment options. I will be seeing my new neurologist in Jan, perhaps he will give me guidance.

If there is anything you can suggest in the meantime Matt, I would appreciate any help.

Take care,

from the centre of Canada

>

>

> ,

>

> I'm sorry I started to read your message but I'm in NY because my mother had to have surgery and turns out has lung cancer and had to have half her lung removed.

>

> i am an expert in Carpel Tunnel and have never had to send 1 patient for surgery in 21 years in practice, I somehow lost your message. if you want send me exactly what's going on and i will try and help you anyway i can.

>

> mitch

>

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