Re: Could use your honest replies

[Guest guest]

Hi,

Well, the good thing is ... you are not a nut case. The bad news is ... this could be sarc (or something(s) else). I'm sure the moderator(s) will respond with more info.

Anyway, your legs sound like RLS (Restless Leg Syndrome) which is common with sarc. But, I don't know how that plays into your arms. Maybe this is seizures??

The burning in your back ... burning anywhere from what I have learned is neuropathic pain ... I have what feels like hot burning knives sticking directly in the lower part of my spine and on both sides of my buttocks ... I have a herniated disc with a pinched nerve. ... with me all of my spine problems are Neurosarc related.

Tingling or falling asleep of hands/feet are also neurologic in nature. I've developed carpel tunnel "suddenly" on both arms/hands ... did not have it one day, had it the next day. The same with the feet ... I have peripheral neuropathy which causes the burning and falling asleep of the feet.

Many of the other group members share the loss of hearing you have experienced, as well as some of the other things you have described.

Until I went on methadone for the pain, I was unable to sit, stand, walk ... I went from a cane to walker to wheelchair and back to cane.

The pain in your eyes could also be sarc related. The soarness in your wrists, ankles, knees, etc., ... also sarc related.

Have you ever been dx'ed with any kind of sarcoid? Have you had any MRI's, EMG's on your upper and/or lower extremities? Have you had your eyes checked by an optomologist (a real eye MD)? Have you ever had any chest x-rays or biopsies of lungs or skin or any other area?

When it comes to sarcoid, nothing is too crazy to avoid ... and yet it's all crazy when it comes to sarcoid ...

Please let us know what, if any medical testing you have had done.

Good luck to you and continue writing ... this is a great group of people who are no longer suffering silently like many of us used to do...

Joan

I have had "spells" where when I was talking my throat would have like a fast muscle contraction & my voice would stop momentarily in the middle of a word. In fact that was what bothered me first as an adult. It was embarrasing.Burning in my back for no reason as tho I had a chemical burn on it.Tingling in hands & feet. This I have heard can be due to Sarc.Shaking of one or both legs, one or both hands. (could not hold a cup to drink it was so bad) Some times I will be setting still & a leg will just start up. It is so obvious you cant hide it. Then I want to crawel in a hole. So far I have not found any way to tell when it will start or end. It just happens.Equilibrium suddenly bad. Like the world spins. Some times mild, some times not.I have lost hearing in both ears, maybe that is related.Hip pain.Lower back pain. I cant stand for long or walk far as the back pain will get so bad. While my joints hurt most of the time, it gets worse while they are load bearing.Setting in a recliner helps to ease it. Setting upright agrivates it.Odd, out of no where pain that comes & goes in knees, ankle, wrists, & area between thumbs & index fingers. Not like the arthritis pain that comes with weather changes.I dont know how to discribe this except to say that at times my eyes feel "sore". Always in the same place. Just a spot about the size of the end of my finger. Ok, go ahead & make fun of me. The few things I did tell the Dr. he poked fun at me about.So are any of these Sarcoidosis related or am I just falling apart, hypocondract, nut case?!?

[Guest guest]

I have had "spells" where when I was talking my throat would have

like a fast muscle contraction & my voice would stop momentarily in

the middle of a word. In fact that was what bothered me first as an

adult. It was embarrasing.

Burning in my back for no reason as tho I had a chemical burn on it.

Tingling in hands & feet. This I have heard can be due to Sarc.

Shaking of one or both legs, one or both hands. (could not hold a

cup to drink it was so bad) Some times I will be setting still & a

leg will just start up. It is so obvious you cant hide it. Then I

want to crawel in a hole. So far I have not found any way to tell

when it will start or end. It just happens.

Equilibrium suddenly bad. Like the world spins. Some times mild,

some times not.

I have lost hearing in both ears, maybe that is related.

Hip pain.

Lower back pain. I cant stand for long or walk far as the back pain

will get so bad. While my joints hurt most of the time, it gets

worse while they are load bearing.

Setting in a recliner helps to ease it. Setting upright agrivates it.

Odd, out of no where pain that comes & goes in knees, ankle, wrists,

& area between thumbs & index fingers. Not like the arthritis pain

that comes with weather changes.

I dont know how to discribe this except to say that at times my eyes

feel "sore". Always in the same place. Just a spot about the size

of the end of my finger.

Ok, go ahead & make fun of me. The few things I did tell the Dr. he

poked fun at me about.

So are any of these Sarcoidosis related or am I just falling apart,

hypocondract, nut case?!?

First off, let me say that NO ONE here will make fun of you. We've all had idiot MD's that decided we were hypochondriacs, and nut cases-- only to be corrected with a diagnosis of neurosarcoidosis.

All of these could be sarcoidosis related. The throat seizures can be myoclonus. The pain in your eyes could be high intraocular pressure. Do you have any lose of vision with these episodes? Or have you found that you are loosing peripheral vision? Are you light sensitive? Do you get migraine headaches?

do you have sarcoidosis in your lungs?

Have your MD's done any tests to see why the nerve pain is happening? EMG's, CT's, MRI's. Do you have any problem with compressed discs in your back?==That too can cause all the pain and tingling.

You aren't nuts, your sick and no one is looking deep enough for the answers. In our LINKS is a site connection to all the tests your MD's need to run. The address is at the bottom of this and every email we send out. Just scroll down, and you'll see the site address for our LINKS.

Let us know what more is going on. We'll see what we can do to help you find answers.

Truly,

Tracie

NS Co-owner/moderator

PS. If we don't get back to you right away, we will get back to you. We too are sick with NS--so we have to pace ourselves. WE try to make sure that someone reads and answers the emails daily-- but once in awhile, it may be 24-48 hours.

[Guest guest]

I have many of these symptoms myself. Symptoms like jerking legs, arms and torso even. It can come on without any warning. It definitely happens when I am emotional and or upset about something. And it intensifies as my emotions.I too have the problems with the pain in the back of my eye. I am also deaf, impotent and incontinent from my illness. Although my doctor's are treating me as if it is ns, but we still do not have a tissue biopsy to conclusively confirm ns. Tissue biopsy is the only medical confirmation of neurosarccoidosis.The pain in the back, legs, joints are also symptomatic of my illness. And a reclining chair does help. However, the drawback is trying to get up and out of the recliner! DUH!So, if you have not taken any further steps to help in identifying your underlying problem, I suggest you may want to start with a biopsy or MRI, after you consult with your MD of course. I AM NOT A DOCTOR AND I AM NOT OFFERING M EDICAL ADVICE.But I wuv you anyway!"Ronnie B." Da luv doctor >> > > > > I have had "spells" where when I was talking my throat would have > like a fast muscle contraction & my voice would stop momentarily in > the middle of a word. In fact that was what bothered me first as an > adult. It was embarrasing.> Burning in my back for no reason as tho I had a chemical burn on it.> Tingling in hands & feet. This I have heard can be due to Sarc.> Shaking of one or both legs, one or both hands. (could not hold a > cup to drink it was so bad) Some times I will be setting still & a > leg will just start up. It is so obvious you cant hide it. Then I > want to crawel in a hole. So far I have not found any way to tell > when it will start or end. It just happens.> Equilibrium suddenly bad. Like the world spins. Some times mild, > some times not.> I have lost hearing in both ears, maybe that is related.> Hip pain.> Lower back pain. I cant stand for long or walk far as the back pain > will get so bad. While my joints hurt most of the time, it gets > worse while they are load bearing.> Setting in a recliner helps to ease it. Setting upright agrivates it.> Odd, out of no where pain that comes & goes in knees, ankle, wrists, > & area between thumbs & index fingers. Not like the arthritis pain > that comes with weather changes.> I dont know how to discribe this except to say that at times my eyes > feel "sore". Always in the same place. Just a spot about the size > of the end of my finger. > > Ok, go ahead & make fun of me. The few things I did tell the Dr. he > poked fun at me about.> So are any of these Sarcoidosis related or am I just falling apart, > hypocondract, nut case?!?> > I have had "spells" where when I was talking my throat would have > like a fast muscle contraction & my voice would stop momentarily in > the middle of a word. In fact that was what bothered me first as an > adult. It was embarrasing.> Burning in my back for no reason as tho I had a chemical burn on it.> Tingling in hands & feet. This I have heard can be due to Sarc.> Shaking of one or both legs, one or both hands. (could not hold a > cup to drink it was so bad) Some times I will be setting still & a > leg will just start up. It is so obvious you cant hide it. Then I > want to crawel in a hole. So far I have not found any way to tell > when it will start or end. It just happens.> Equilibrium suddenly bad. Like the world spins. Some times mild, > some times not.> I have lost hearing in both ears, maybe that is related.> Hip pain.> Lower back pain. I cant stand for long or walk far as the back pain > will get so bad. While my joints hurt most of the time, it gets > worse while they are load bearing.> Setting in a recliner helps to ease it. Setting upright agrivates it.> Odd, out of no where pain that comes & goes in knees, ankle, wrists, > & area between thumbs & index fingers. Not like the arthritis pain > that comes with weather changes.> I dont know how to discribe this except to say that at times my eyes > feel "sore". Always in the same place. Just a spot about the size > of the end of my finger. > > Ok, go ahead & make fun of me. The few things I did tell the Dr. he > poked fun at me about.> So are any of these Sarcoidosis related or am I just a falling > apart, hypocondract, nut case?!?>

[Guest guest]

Hi, Chicks! Welcome to the group. It's a crying shame we have to meet because we're sick, but it's a wonderful group of people who are willing to comfort, share info, give advice, or just listen.

I know that some have responded to your message; I'll try not to repeat what they said or asked. Would you mind giving your age & how long you've had these symptoms? Did they all start pretty close together, or over a period of years? Is this doctor you mentioned your primary care doc; if so, is he family practice or an internist? His ignorance of sarcoidosis isn't unusual; his unkind & professional manner is less common, thank goodness. Very few physicians have up-to-date knowledge about sarcoidosis & it's a rare bird indeed who knows anything about neurosarc. So welcome to the trenches. Luckily, there are some doctors who are willing to be educated & guess who gets to do the educating? That's right, little old you! Little old sick you!

Re: the world spinning. That sounds like vertigo, which is often associated with hearing loss. Sarc loves to attack the cranial nerves. #8 is the hearing nerve. How did you lose your hearing? Gradual or sudden? Did you see a doctor or have any kind of hearing tests to determine what caused the hearing loss? Did the vertigo start at the same time? My first sign of neurosarc was hearing loss, altho it wasn't recognized at the time. The hearing loss was blamed on viruses.

One of the frustrating aspects of sarcoidosis is that it can affect any organ system in the body, so that you can have a lot of symptoms that seem unrelated & the doctors think that you are nuts, or a hypochondriac. The fact that symptoms can come & go and you can have all normal tests just confirms it for them. It takes an exceptional doctor (like House on tv, only hopefully you can find one with more compassion!) who will really, really listen, do a very thorough & skilled physical exam, and pull up that little bit of stored info from the dusty corners of their brain--hmm, sarcoidosis. I wonder. . . . then check it out. This, of course, is fantasy. Since you are on a reality show, you get to do the research, take in the info, shop around for a doctor with a working brain, remind him/her that the textbooks are 50 years behind, etc.

Now, here's the good part! You have hit paydirt finding this group! There is a wealth of knowledge, experience, wisdom & compassion here. Give us as much information as you can & we can give you some direction and encouragement. Your symptoms could mean neurosarc, or another neurological disorder, or a collection of problems. A good doctor can sort it out.

As for wondering if you're a nut case, when my neurologist first told me he thought I had neurosarcoidosis over 4 years ago, I asked him, "So I'm not nuts?" And he said with a smile, "Well, you might be, but you have this too!" So that's always a possibility.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Could use your honest repliesDate: Sun, 20 Nov 2005 17:56:57 -0000I have had "spells" where when I was talking my throat would have like a fast muscle contraction & my voice would stop momentarily in the middle of a word. In fact that was what bothered me first as an adult. It was embarrasing.Burning in my back for no reason as tho I had a chemical burn on it.Tingling in hands & feet. This I have heard can be due to Sarc.Shaking of one or both legs, one or both hands. (could not hold a cup to drink it was so bad) Some times I will be setting still & a leg will just start up. It is so obvious you cant hide it. Then I want to crawel in a hole. So far I have not found any way to tell when it will start or end. It just happens.Equilibrium suddenly bad. Like the world spins. Some times mild, some times not.I have lost hearing in both ears, maybe that is related.Hip pain.Lower back pain. I cant stand for long or walk far as the back pain will get so bad. While my joints hurt most of the time, it gets worse while they are load bearing.Setting in a recliner helps to ease it. Setting upright agrivates it.Odd, out of no where pain that comes & goes in knees, ankle, wrists, & area between thumbs & index fingers. Not like the arthritis pain that comes with weather changes.I dont know how to discribe this except to say that at times my eyes feel "sore". Always in the same place. Just a spot about the size of the end of my finger. Ok, go ahead & make fun of me. The few things I did tell the Dr. he poked fun at me about.So are any of these Sarcoidosis related or am I just falling apart, hypocondract, nut case?!?I have had "spells" where when I was talking my throat would have like a fast muscle contraction & my voice would stop momentarily in the middle of a word. In fact that was what bothered me first as an adult. It was embarrasing.Burning in my back for no reason as tho I had a chemical burn on it.Tingling in hands & feet. This I have heard can be due to Sarc.Shaking of one or both legs, one or both hands. (could not hold a cup to drink it was so bad) Some times I will be setting still & a leg will just start up. It is so obvious you cant hide it. Then I want to crawel in a hole. So far I have not found any way to tell when it will start or end. It just happens.Equilibrium suddenly bad. Like the world spins. Some times mild, some times not.I have lost hearing in both ears, maybe that is related.Hip pain.Lower back pain. I cant stand for long or walk far as the back pain will get so bad. While my joints hurt most of the time, it gets worse while they are load bearing.Setting in a recliner helps to ease it. Setting upright agrivates it.Odd, out of no where pain that comes & goes in knees, ankle, wrists, & area between thumbs & index fingers. Not like the arthritis pain that comes with weather changes.I dont know how to discribe this except to say that at times my eyes feel "sore". Always in the same place. Just a spot about the size of the end of my finger. Ok, go ahead & make fun of me. The few things I did tell the Dr. he poked fun at me about.So are any of these Sarcoidosis related or am I just a falling apart, hypocondract, nut case?!?~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hey Chicks - Just a little quick note - I was told it was "all in my head" and literally it is. I was able to prove it because I have a neurogenic bladder - the bladder and the brain don't coordinate - so now I have proof. I would love to give that particular doc a piece of my mind.

Terri

That deserves a really big . . . UFFFFFFFF!!!!

(That is the Kuwaitee way of ... Screeeeaammm!!!! ... or Siiiggghhh! ... or Grrrrrrrr! ... Kim taught us that!)

[Guest guest]

I guess I'm older than dirt, because I'll be 57 in February! I'll answer more later. Have a good day!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Could use your honest repliesDate: Wed, 23 Nov 2005 04:35:27 -0000Would you mind giving your age & how long you've had these symptoms? My age is one day before dirt OR 55 years LOL I was diagnosed with Sarcoidosis 5 years ago.I had a chronic chough for about 20 years that I blamed on allergies & Dr.s nodded & accepted that.Five years ago I got a swollen painful foot @ work. After several reaccurances, many Xrays, several antiboitics I developed what looked like a HUGE case of mumps. As I had already had them I went to the Dr. An MRI was ordered & what "could be Sarcoidosis" or several other things was found in glands near my ears. Later a chest Xray found what they thought was Cancer in the upper lobe of my left lung.When the biopsy came back it was Sarcoidosis. From that time on life has been a Real trip. The pain has caused elevated blood pressure so on that they have beleived me. All other tests (mostly blood work) have not had diffinative results. As I understand it in most cases of Sarc. they dont though.Did they all start pretty close together, or over a period of years? First came the voice "spazims" maybe 5 years prior to my diagnosis. Is this doctor you mentioned your primary care doc; if so, is he family practice or an internist?Beleive it or not, the DR. is a Rhuematologist (sp). Supposed to be one of the best in my area. How did you lose your hearing? Gradual or sudden? gradualy( I think) lost hearing in right ear. Had hearing tests & they can Rx me a hearing aid but as I have allergies to plastics & they are not cheap....then I realised that I was having problems hearing in my left ear.Did you see a doctor or have any kind of hearing tests to determine what caused the hearing loss? yes saw Dr he sent me for hearing test then no mention of it again (Sarc.?)shrug Did the vertigo start at the same time? hard to say but yes around the time my hearing started fading I beleive As to my sanity, or lack there of, I blame that on having raised 4 kids thru the teen years. ROFL~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

,

I was totally unable to void. They kept filling and I kept holding.

I finally told them they just had to cath me cause I couldn't take

anymore. Are you taking any meds for it? I am using Detrol and it

seems to be working. What about you?

Terri

>

> >

> > Hey Chicks - Just a little quick note - I was told

> > it was " all in my head " and literally it is. I was

> > able to prove it because I have a neurogenic bladder

> > - the bladder and the brain don't coordinate - so

> > now I have proof. I would love to give that

> > particular doc a piece of my mind.

> >

> > Terri =P~

> >

> >

> Me too! They didn't believe me & I had a miserable

> test where they shot water up in my bladder & asked me

> to hold it. They became believers when that water came

> out as fast as they could pump it in.

>

> grannylunatic@y...

> grannylunaticd@a...

>

>

>

>

> __________________________________

> Yahoo! Music Unlimited

> Access over 1 million songs. Try it free.

> http://music.yahoo.com/unlimited/

>

[Guest guest]

Hi . I had problems with incontinence myself. They put me on oxybutyin or a generic of Detrol and it has taken care of that issue completely. Just putting my two cents in! Debbiemosaicgirl1 wrote: ,I was totally unable to void. They kept filling and I kept holding. I finally told them they just had to cath me cause I couldn't take anymore. Are you taking any meds for it? I am using Detrol and it seems to be working. What about you?Terri> > > > > Hey Chicks - Just a little quick note - I

was told> > it was "all in my head" and literally it is. I was> > able to prove it because I have a neurogenic bladder> > - the bladder and the brain don't coordinate - so> > now I have proof. I would love to give that> > particular doc a piece of my mind.> > > > Terri =P~> > > > > Me too! They didn't believe me & I had a miserable> test where they shot water up in my bladder & asked me> to hold it. They became believers when that water came> out as fast as they could pump it in.> > grannylunatic@y...> grannylunaticd@a...> > > > > __________________________________ > Yahoo! Music Unlimited > Access over 1 million songs. Try it free. > http://music.yahoo.com/unlimited/>

[Guest guest]

Hi Terri

They started me on Ditropan then I switched to the

generic Oxybutenin? something like that. It helps

during the day but when I hit the hay it's Depends

Woman. I just don't wake up.

--- mosaicgirl1 mosaicgirl1@...> wrote:

> ,

>

> I was totally unable to void. They kept filling and

> I kept holding.

> I finally told them they just had to cath me cause I

> couldn't take

> anymore. Are you taking any meds for it? I am

> using Detrol and it

> seems to be working. What about you?

>

> Terri

>

> >

> > >

> > > Hey Chicks - Just a little quick note - I was

> told

> > > it was " all in my head " and literally it is. I

> was

> > > able to prove it because I have a neurogenic

> bladder

> > > - the bladder and the brain don't coordinate -

> so

> > > now I have proof. I would love to give that

> > > particular doc a piece of my mind.

> > >

> > > Terri =P~

> > >

> > >

> > Me too! They didn't believe me & I had a miserable

> > test where they shot water up in my bladder &

> asked me

> > to hold it. They became believers when that water

> came

> > out as fast as they could pump it in.

> >

> > grannylunatic@y...

> >

> >

> > __________________________________

> > Yahoo! Music Unlimited

> > Access over 1 million songs. Try it free.

> > http://music.yahoo.com/unlimited/

> >

>

>

>

>

> Hi

grannylunatic@...

__________________________________

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