Re: Better days

[Guest guest]

nicolelam4tweety,

You are not alone I have Neurosarcoidosis and have had butterflies in my chest. They gone away since I have been doing cardio training 6 days a week for 30 min to an Hour a day. Its been hard to due it lately due to joint pain, but I soldier on due to cardio work outs helps to keep my Blood Sugar and Blood Pressure in control and of course a good low sugar and low starch diet. I understand the weight gain for I went from 198 lbs to 280 in weeks 5' 8" tall. Well cardio training and diet has got me down to 255 avg. but it has been a long fight to get there and I am still fighting that fight. I have some nice clothes that I want to wear again out to dinner with someone special. Wish I could still fit in my uniform.

As for the muscle twitching I would use MSM powder which I do to support my joints and muscles. Still get a little twitching after workout due to old drill Sgt in me keeps pushing me to do more and more. O well men and our egos. I guess I our egos are the only thing bigger then our imagination. I wish you blessings and may you soon know days of wellness and pain-free full of joy and compassion.

Greg aka Krumdawg

From: nicolelam4tweety

Sent: Tuesday, August 25, 2009 7:29 PM

To: Neurosarcoidosis

Subject: Better days

This support group is wonderful. For 13 years I have been alone living with Neuro-sarcoidosis in fear that it will flare up again. I have been fine for the past I'd say, 9-10 years with no official signs that the neurosarcoidosis has resurfaced. I live in Montgomery, AL and all of my doctors are in Birmingham, AL. On May 26 1996 at the age of 12, I woke up completely deaf in both ears. After being seen my over 15 "specialist" I was finally given a biopsy after more than 5 spinal taps, 15 MRIs/CTs, blood test etc...a on duty x-ray physician noticed a small inflamed area near my right ear. It was the size of a "pin tip" so it's a miracle he saw it. The biopsy was done and after a year of testing, I was diagnosed with Neuro sarcoidosis. Initially doctors were convinced I had meningitis since I'd woken up deaf and was having facial paralysis and muscle weakness. All test came back clean of meningitis yet they continued to test for it (horrible experience). Anyway, at the time I was the youngest patient my doctors had ever heard (that was still living) that was diagnosed with neurosarcoidosis and they put me on the highest adult dose of Prednisone, Methotrexate, Folic Acid, Zinc, and other medications b/c they did not know how to treat this in children. I went from a tiny 98lbs (I'm only 4'11") to a staggering 140something pounds in a matter of WEEKs not months. I could barely walk and could not stand for more than 10 minutes or my legs would literally give out. The Prednisone made me blow up so quickly that I FELT every painful stretch mark. I would reach for something and feel my skin split. It was a horrible experience I never want to experience again. I am still deaf and have since learned sign language but also got a cochlear implant a year later which I can hear extremely well with. So far I've been doing very will and no signs of the sarcoid, however, there are some things that bother me so much that I don't know what to do. I have muscle twitching EVERYwhere at any given time. I mean they are so strong and can last for so long. They can also be painful-sharp pain like a stabbing as well at times. I don't know nor do doctors if this is related to the neurosarcoidosis. Does anyone else experience this?? I also feel what I call "heart flutters" like there's a butterfly in my heart from time to time. Cardiologist have been unable to catch this episode as well. Am I alone or does anyone else experience "heart flutters", muscle twitching (that can be painful at times), and sharp stabbing/needle stick sudden quick pains throughout the body?

[Guest guest]

Wow 12 years old, I can't imagine, I have a niece diagnosed with Juvenile Rheumatoid Arthritis atage 2, and was sad to hear that, but NS at 12.  I am glad to hear that you have not had any more problems for years, that's great.

However, the symptoms you are talking about, I do have, the muscle twitching, and the stabbing pain, yes.  I will sometimes have the stabbing pain in the same place all day, and the next day wake up and it's gone. The twitching is worse when I relax.

I also find that if I don't drink enough water during the day the twitching is worse. I also take Calcium and Magnesium which helps, and MSM capsules.  The stabbing pain, I can't relate to anything, it just comes and goes.  I don't have heart flutters, and

have had my heart checked out, and they tell me it's OK, no sign of Sarcoid there.I would however talk to your doctors, if you are having symptoms of NS again, they should get you on something, not necessarily Prednisone, there are other treatments.

I am on Remicade right now.  I would at least check it out.   Marla

 

This support group is wonderful. For 13 years I have been alone living with Neuro-sarcoidosis in fear that it will flare up again. I have been fine for the past I'd say, 9-10 years with no official signs that the neurosarcoidosis has resurfaced. I live in Montgomery, AL and all of my doctors are in Birmingham, AL. On May 26 1996 at the age of 12, I woke up completely deaf in both ears. After being seen my over 15 " specialist " I was finally given a biopsy after more than 5 spinal taps, 15 MRIs/CTs, blood test etc...a on duty x-ray physician noticed a small inflamed area near my right ear. It was the size of a " pin tip " so it's a miracle he saw it. The biopsy was done and after a year of testing, I was diagnosed with Neuro sarcoidosis. Initially doctors were convinced I had meningitis since I'd woken up deaf and was having facial paralysis and muscle weakness. All test came back clean of meningitis yet they continued to test for it (horrible experience). Anyway, at the time I was the youngest patient my doctors had ever heard (that was still living) that was diagnosed with neurosarcoidosis and they put me on the highest adult dose of Prednisone, Methotrexate, Folic Acid, Zinc, and other medications b/c they did not know how to treat this in children. I went from a tiny 98lbs (I'm only 4'11 " ) to a staggering 140something pounds in a matter of WEEKs not months. I could barely walk and could not stand for more than 10 minutes or my legs would literally give out. The Prednisone made me blow up so quickly that I FELT every painful stretch mark. I would reach for something and feel my skin split. It was a horrible experience I never want to experience again.

I am still deaf and have since learned sign language but also got a cochlear implant a year later which I can hear extremely well with.

So far I've been doing very will and no signs of the sarcoid, however, there are some things that bother me so much that I don't know what to do. I have muscle twitching EVERYwhere at any given time. I mean they are so strong and can last for so long. They can also be painful-sharp pain like a stabbing as well at times. I don't know nor do doctors if this is related to the neurosarcoidosis. Does anyone else experience this?? I also feel what I call " heart flutters " like there's a butterfly in my heart from time to time. Cardiologist have been unable to catch this episode as well.

Am I alone or does anyone else experience " heart flutters " , muscle twitching (that can be painful at times), and sharp stabbing/needle stick sudden quick pains throughout the body?

[Guest guest]

Stil here in San Francisco. thought it was just me as I am a newbee. Started treatment this weekand my 17 yr old came down with swine flu! What are the odds? Only in a sarc life ha!To: Neurosarcoidosis Sent: Tuesday, August 25, 2009 6:55:41

PMSubject: Re: Better days

nicolelam4tweety,

You are not alone I have Neurosarcoidosis and have had butterflies in my chest. They gone away since I have been doing cardio training 6 days a week for 30 min to an Hour a day. Its been hard to due it lately due to joint pain, but I soldier on due to cardio work outs helps to keep my Blood Sugar and Blood Pressure in control and of course a good low sugar and low starch diet. I understand the weight gain for I went from 198 lbs to 280 in weeks 5' 8" tall. Well cardio training and diet has got me down to 255 avg. but it has been a long fight to get there and I am still fighting that fight. I have some nice clothes that I want to wear again out to dinner with someone special. Wish I could still fit in my uniform.

As for the muscle twitching I would use MSM powder which I do to support my joints and muscles. Still get a little twitching after workout due to old drill Sgt in me keeps pushing me to do more and more. O well men and our egos. I guess I our egos are the only thing bigger then our imagination. I wish you blessings and may you soon know days of wellness and pain-free full of joy and compassion.

Greg aka Krumdawg

From: nicolelam4tweety

Sent: Tuesday, August 25, 2009 7:29 PM

To: Neurosarcoidosis@ yahoogroups. com

Subject: Better days

This support group is wonderful. For 13 years I have been alone living with Neuro-sarcoidosis in fear that it will flare up again. I have been fine for the past I'd say, 9-10 years with no official signs that the neurosarcoidosis has resurfaced. I live in Montgomery, AL and all of my doctors are in Birmingham, AL. On May 26 1996 at the age of 12, I woke up completely deaf in both ears. After being seen my over 15 "specialist" I was finally given a biopsy after more than 5 spinal taps, 15 MRIs/CTs, blood test etc...a on duty x-ray physician noticed a small inflamed area near my right ear. It was the size of a "pin tip" so it's a miracle he saw it. The biopsy was done and after a year of testing, I was diagnosed with Neuro sarcoidosis. Initially doctors were convinced I had meningitis since I'd woken up deaf and was having facial paralysis and muscle weakness. All test came back clean of meningitis yet they continued to test for it (horrible experience). Anyway, at the time I was the youngest patient my doctors had ever heard (that was still living) that was diagnosed with neurosarcoidosis and they put me on the highest adult dose of Prednisone, Methotrexate, Folic Acid, Zinc, and other medications b/c they did not know how to treat this in children. I went from a tiny 98lbs (I'm only 4'11") to a staggering 140something pounds in a matter of WEEKs not months. I could barely walk and could not stand for more than 10 minutes or my legs would literally give out. The Prednisone made me blow up so quickly that I FELT every painful stretch mark. I would reach for something and feel my skin split. It was a horrible experience I never want to experience again. I am still deaf and have since learned sign language but also got a cochlear implant a year later which I can hear extremely well with. So far I've been doing very will and no signs of the sarcoid, however, there are some things that bother me so much that I don't know what to do. I have muscle twitching EVERYwhere at any given time. I mean they are so strong and can last for so long. They can also be painful-sharp pain like a stabbing as well at times. I don't know nor do doctors if this is related to the neurosarcoidosis. Does anyone else experience this?? I also feel what I call "heart flutters" like there's a butterfly in my heart from time to time. Cardiologist have been unable to catch this episode as well. Am I alone or does anyone else experience "heart flutters", muscle twitching (that can be painful at times), and sharp stabbing/needle stick sudden quick pains throughout the body?

[Guest guest]

Greg/Krumdawg,

I feel sooo much better knowing that I am not alone. For years doctors told me

that there was nothing " wrong " with my heart and I was just imagining what I was

feeling. I know what I was feeling and they were real. They can be so scary at

times b/c they can last long (quite a few seconds) or can be very quick (one

second or less). Other doctors would tell me, " Oh well, if you eat chocolate or

drink a lot of coffee or soda, that can causes it so you just need to cut down " .

Of course I'd just look back at them and honestly tell them I do not drink soda

(I have a sensitive mouth so it burns, coffee makes me sleepy so I stay away

from it (I know, weird but coffee has the opposite affect on me) and I'm lactose

intolerant so I don't eat dairy (chocolate included). With that being said, the

doctor would proceed to say that maybe I was just imagining the

" flutters/butterflies " . I felt so horrible for years that I just tried to stop

talking about them. It's been since I was 12yrs old, since I was diagnosed with

neuro-sarcoidosis that I've had these chain of events and to have doctors pretty

much tell you it's all in your head, you start to wonder if it's true since no

one else seems to understand. Thank you so much for responding to my message. I

now have the confirmation that I do not have to ignore this " imaginary " symptoms

b/c they are there and I'm not alone. I used to keep myself so busy to the point

of exhaustion to keep the flutters away, but it works. In college I was dancing

with two dance companies and doing advanced gymnastics all back to back,

literally. My parents didn't understand why I kept myself so busy and involved

with these activities but I just felt I couldn't explain. No one understood. It

kept the " flutters/butterflies " away.

>

> nicolelam4tweety,

>

> You are not alone I have Neurosarcoidosis and have had butterflies in my

chest. They gone away since I have been doing cardio training 6 days a week for

30 min to an Hour a day. Its been hard to due it lately due to joint pain, but I

soldier on due to cardio work outs helps to keep my Blood Sugar and Blood

Pressure in control and of course a good low sugar and low starch diet. I

understand the weight gain for I went from 198 lbs to 280 in weeks 5' 8 " tall.

Well cardio training and diet has got me down to 255 avg. but it has been a long

fight to get there and I am still fighting that fight. I have some nice clothes

that I want to wear again out to dinner with someone special. Wish I could still

fit in my uniform.

> As for the muscle twitching I would use MSM powder which I do to support my

joints and muscles. Still get a little twitching after workout due to old drill

Sgt in me keeps pushing me to do more and more. O well men and our egos. I guess

I our egos are the only thing bigger then our imagination. I wish you blessings

and may you soon know days of wellness and pain-free full of joy and compassion.

>

>

> Greg aka Krumdawg

>

>

>

> From: nicolelam4tweety

> Sent: Tuesday, August 25, 2009 7:29 PM

> To: Neurosarcoidosis

> Subject: Better days

>

>

> This support group is wonderful. For 13 years I have been alone living with

Neuro-sarcoidosis in fear that it will flare up again. I have been fine for the

past I'd say, 9-10 years with no official signs that the neurosarcoidosis has

resurfaced. I live in Montgomery, AL and all of my doctors are in Birmingham,

AL. On May 26 1996 at the age of 12, I woke up completely deaf in both ears.

After being seen my over 15 " specialist " I was finally given a biopsy after more

than 5 spinal taps, 15 MRIs/CTs, blood test etc...a on duty x-ray physician

noticed a small inflamed area near my right ear. It was the size of a " pin tip "

so it's a miracle he saw it. The biopsy was done and after a year of testing, I

was diagnosed with Neuro sarcoidosis. Initially doctors were convinced I had

meningitis since I'd woken up deaf and was having facial paralysis and muscle

weakness. All test came back clean of meningitis yet they continued to test for

it (horrible experience). Anyway, at the time I was the youngest patient my

doctors had ever heard (that was still living) that was diagnosed with

neurosarcoidosis and they put me on the highest adult dose of Prednisone,

Methotrexate, Folic Acid, Zinc, and other medications b/c they did not know how

to treat this in children. I went from a tiny 98lbs (I'm only 4'11 " ) to a

staggering 140something pounds in a matter of WEEKs not months. I could barely

walk and could not stand for more than 10 minutes or my legs would literally

give out. The Prednisone made me blow up so quickly that I FELT every painful

stretch mark. I would reach for something and feel my skin split. It was a

horrible experience I never want to experience again.

>

> I am still deaf and have since learned sign language but also got a cochlear

implant a year later which I can hear extremely well with.

>

> So far I've been doing very will and no signs of the sarcoid, however, there

are some things that bother me so much that I don't know what to do. I have

muscle twitching EVERYwhere at any given time. I mean they are so strong and can

last for so long. They can also be painful-sharp pain like a stabbing as well at

times. I don't know nor do doctors if this is related to the neurosarcoidosis.

Does anyone else experience this?? I also feel what I call " heart flutters " like

there's a butterfly in my heart from time to time. Cardiologist have been unable

to catch this episode as well.

>

> Am I alone or does anyone else experience " heart flutters " , muscle twitching

(that can be painful at times), and sharp stabbing/needle stick sudden quick

pains throughout the body?

>