tarsal tunnel

[Guest guest]

Has anyone had tarsal tunnel syndrome - that's like carpal tunnel but

in your ankle. I was just diagnosed and don't know much about it.

Can't believe I have yet ANOTHER odd problem. My family doctor can't

believe it either. I wonder if all these inflammatory problems are

related to sarcoidosis or just coincidence?

I'd bet it's sarcoidosis arthritis and granulomas that are impeding the tarsal ligament. Sarc loves our feet, ankles, wrists and fingers. You need a good rheumatologist to help address these issues-- and help get the systemic inflammation down. Yeah, it is all sarc related. Sarc will and can hit any and all body systems.

Some of us have had carpal tunnel surgery, with some success. My Rheumi refused to have it done- since the sarc is so involved. I've had alot of relief from the bone and sarc induced arthritis with the Methotrexate, Plaquenil and Remicade.

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

I saw a book on House in B & N today. The sarc show wanted them to do a Kveim test- (which isn't done anymore) and explained that it takes a month or more to get results, and isn't effective- and they wanted the results "stat." Scary info. Again, not at all realistic.

Tracie

[Guest guest]

Has anyone had tarsal tunnel syndrome - that's like carpal tunnel but

in your ankle. I was just diagnosed and don't know much about it.

Can't believe I have yet ANOTHER odd problem. My family doctor can't

believe it either. I wonder if all these inflammatory problems are

related to sarcoidosis or just coincidence? By the way, did anyone see

the TV show House last night? They thought they had 2 sarcoid

patients. They treated them with methotrexate and were discouraged

that they didn't show improvement after a few hours. Too funny.

-

[Guest guest]

Hi wendy,I saw the last few minutes of House and it was really something. They keep touching on it but this was the first time they actually took it this far. Interesting! As for the tarsal syndrome, I hadn't heard of it. Lots of coincidences though for sarcoid pts. Blessings,Beckywendy_cidp wrote: Has anyone had tarsal tunnel syndrome - that's like carpal tunnel but in your ankle. I was just diagnosed and don't know much about it. Can't believe I have yet ANOTHER odd problem. My family doctor

can't believe it either. I wonder if all these inflammatory problems are related to sarcoidosis or just coincidence? By the way, did anyone see the TV show House last night? They thought they had 2 sarcoid patients. They treated them with methotrexate and were discouraged that they didn't show improvement after a few hours. Too funny. -

Access over 1 million songs - Yahoo! Music Unlimited Try it today.

[Guest guest]

How do they test to see if it is

sarcoidosis arthritis and granulomas?

You need to have an ACE test, as well as ESR and CRP. (Angiotensin Converting Enzyme, E?Sediment Rate, and C-Reactive Protein). These all signify systemic inflammation.

In the LINKS are many articles and tests that can be run to not only diagnosis sarcoidosis- but to rule out any other autoimmune factors. (Sarcoidosis (systemic) is a matter of ruling out all the other things it can be.)

The cysts that the MD took out should have been biopsied-- or they can do muscle biopsies (do they say you have fibromyalgia-the FM hard spots can be good biopsy points) as well as chest xrays -sarc loves lungs, so that is an easy place to go for with a bronchoscopy and determine sarcoidosis.

If you already have a lung diagnosis, and then all these other symptoms are coming up-- it's more than likely that it's all secondary to your sarcoidosis. MD's still don't realize that sarc is so invasive of our whole body.

Many of us have developed diabetes from years of prednisone treatment, and arthritis from the sarcoidosis- as it inflames the joints, ligaments, muscles and even bone and bone marrow. You can even have vasculitis (inflammation of the blood vessels) that can make it so that if you're in flare, you can have intermittent pain. Many of us have the vasculitis in our brains- that impede our cognitive skills, short-term memory, problem solving, personality, sexuality- etc==depending on what area of the brain is not getting the right signals. (Neuropsych testing can show this- even when a CT or MRI doesn't show any problems.)

Eyes are another favorite spot for sarcoidosis. Iritis and Uveitis are big problems, and come with photophobia (light sensitivity) and dry eyes. The inflammation of your eyes can lead to glaucoma- and is not a problem that allows you to sit still and wait to see if it resolves. Take immediate action to see an Ophthalmologist (MD) if your eyes are involved.

All of the sites listed in the LINKS are ok to print out and take with you to your MD's. They probably aren't up on sarcoidosis, and will tend to tell you to take prednisone and let it run it's course. (Once more than one system is involved- you need a combination of immunosupressants.)

Hope this helps,

Tracie

NS Co-owner/moderator

Scroll down to the site address for the LINKS.

[Guest guest]

Oh thank you Tracie. I feel like I am going insane. I tell my GP

these things must be sarcoid related. He shrugs and says he doensn't

think so. I also had 2 cysts removed on my back, 1 a year ago and

another one last week. Turns out sarcoid can cause those too. My

doctors still won't agree that I have sarcoidosis, let alone that it

has gone systemic. As per the request of my neurologist I am getting a

rheumatologist. Hopefully he can set things straight. Thanks again. My

sanity is returning!!!

-

>

> In a message dated 11/1/06 7:41:46 PM Pacific Standard Time,

> wendy_cidp@... writes:

>

>

> > Has anyone had tarsal tunnel syndrome - that's like carpal tunnel but

> > in your ankle. I was just diagnosed and don't know much about it.

> > Can't believe I have yet ANOTHER odd problem. My family doctor can't

> > believe it either. I wonder if all these inflammatory problems are

> > related to sarcoidosis or just coincidence?

>

> I'd bet it's sarcoidosis arthritis and granulomas that are impeding the

> tarsal ligament. Sarc loves our feet, ankles, wrists and fingers.

You need a good

> rheumatologist to help address these issues-- and help get the systemic

> inflammation down. Yeah, it is all sarc related. Sarc will and can

hit any and

> all body systems.

>

> Some of us have had carpal tunnel surgery, with some success. My Rheumi

> refused to have it done- since the sarc is so involved. I've had

alot of relief

> from the bone and sarc induced arthritis with the Methotrexate,

Plaquenil and

> Remicade.

>

> Take care,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

Hi Tracie. Thanks for the reply. How do they test to see if it is

sarcoidosis arthritis and granulomas? I have had carpal tunnel for

about 6 years. Surgery was suggested at the time but I avoid doctors,

tests, etc... if at all possible (LOL). So I never had it done. It's

been flaring up recently too, in addition to this new ankle problem. I

thought it was from taking up knitting, but perhaps not? How does one

know what causes what? These issues all must be taken into account

when dealing with my insurance company. If the doctors don't agree,

well, what a mess.

-

>

> In a message dated 11/1/06 7:41:46 PM Pacific Standard Time,

> wendy_cidp@... writes:

>

>

> > Has anyone had tarsal tunnel syndrome - that's like carpal tunnel but

> > in your ankle. I was just diagnosed and don't know much about it.

> > Can't believe I have yet ANOTHER odd problem. My family doctor can't

> > believe it either. I wonder if all these inflammatory problems are

> > related to sarcoidosis or just coincidence?

>

> I'd bet it's sarcoidosis arthritis and granulomas that are impeding the

> tarsal ligament. Sarc loves our feet, ankles, wrists and fingers.

You need a good

> rheumatologist to help address these issues-- and help get the systemic

> inflammation down. Yeah, it is all sarc related. Sarc will and can

hit any and

> all body systems.

>

> Some of us have had carpal tunnel surgery, with some success. My Rheumi

> refused to have it done- since the sarc is so involved. I've had

alot of relief

> from the bone and sarc induced arthritis with the Methotrexate,

Plaquenil and

> Remicade.

>

> Take care,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

Hi , I will be following along to see how the visit to the rheumatologist goes for you. I have been trying to find one here in Yakima, Wa. who will treat sarcoidosis and so far the two listed in the phone book say they don't treat symptoms that include sarcoidosis. I wish you the best of luck with it and I know what being told "You don't have systemic sarcoidosis let alone neuro type. How could the doctor know that from just taking a blood test and reading my vitals? I don't have insurance, medicaid, so pay as I go so some options I can't aford or some doctors will not accept people who are not insured anyway. Everyone says I look the picture of health. Yeh, right. Someday hopefully there will be better care for all of us. I pray every day for it to be sooner than later. Clare wendy_cidp wrote: Oh thank you Tracie. I feel like I am going insane. I tell my GPthese things must be sarcoid related. He shrugs and says he doensn'tthink so. I also had 2 cysts removed on my back, 1 a year ago andanother one last week. Turns out sarcoid can cause those too. Mydoctors still won't agree that I have sarcoidosis, let alone that ithas gone systemic. As per the request of my neurologist I am getting arheumatologist. Hopefully he can set things straight. Thanks again. Mysanity is returning!!!->> > > > > Has anyone had tarsal tunnel syndrome - that's like carpal tunnel but> > in your ankle. I was just diagnosed and don't know much about it.> > Can't believe I have yet ANOTHER odd problem. My family doctor can't> > believe it either. I wonder if all these inflammatory problems are> > related to sarcoidosis or just coincidence?> > I'd bet it's sarcoidosis arthritis and granulomas that are impeding the > tarsal ligament. Sarc loves our feet, ankles, wrists and fingers. You need a good > rheumatologist to help address these issues-- and help get the systemic > inflammation down. Yeah, it is all sarc related. Sarc will and canhit any and

> all body systems. > > Some of us have had carpal tunnel surgery, with some success. My Rheumi > refused to have it done- since the sarc is so involved. I've hadalot of relief > from the bone and sarc induced arthritis with the Methotrexate,Plaquenil and > Remicade. > > Take care,> Tracie> NS Co-owner/moderator>

Check out the New Yahoo! Mail - Fire up a more powerful email and get things done faster.

[Guest guest]

Hi Clare. I saw my neurologist yesterday. She agrees that my ankle is

not tarsal tunnel, but an inflammatory condition related to my

" disease. " Her opinion is that this is another symptom which is slowly

revealing the true nature of the disease. Guess this has officially

gone systemic. She again mentioned going to a rheumatologist. One is

now consulting closely with my internist to oversee the remicade,

which I start tomorrow or Monday. I think Tracie's explaination of the

ankle fits in the best in terms of what could be happening. I am going

to send a copy of her post to mey internist. Thanks to you and Tracie

for bolstering my confidence to keep pushing. And wish me luck. I am

VERY excited about the remicade. Couldn't ask for a better Christmas

present.

[Guest guest]

,

This is excellant news. I'm glad you'll be able to start the Remicade. For me, it has been a godsend. I will say that for others, it's been a nightmare with allergic reaction. That is one of the reasons they start you at a low dose, and do the infusion over 2-3 hours initially. Even now, after being on it for over a year, they still take the full 2 hours to infuse me.

For me, it has really helped with the sarcoidosis induced arthritis, in my spine, in my ribcage, my hands and feet. It hasn't slowed down the cartlidge deformation that is happening in my fingers and feet-- but at least the pain is gone.

It's also made it possible for me to get off my oxygen during the day.

You will need to be on Methotrexate with it--they work hand in hand. You will also need Folic Acid 1mg daily, so that you don't develop anemias.

It's essential to get a CBC monthly, so that they know if you start having any signs of leukemia or lymphoma-- as well as an LFT- liver function tests each month. That way if a problem starts to develop- it can be addressed before it gets out of hand.

I do want to stress-- if you feel you are getting sick, a cold, respiratory infection, the flu-- get in to see the MD. When they blow you off and tell you to see how you're doing in a couple of days--explain that you are under intense imunosuppressant drug treatment, and that you can't wait to see what happens in a day or two. If you put it off, you can develop serious infections. My MD has me keep an antibiotic, as well as the one for the flu--on hand--so that if I get sick on a Friday, I can start treatment, and get into her on Monday.

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi Tracie. Tomorrow morning I start. I've been crying all day, since I

heard of the appointment. I am so hopeful the feelings are

overwhelming me I think. They didn't put me on methotrexate because I

am already on-- and have been for a while-- imuran. Talk about a lot

of immunospressant therapy! I have been taking folic acid for years.

My neuro asked me to take it as soon as I began being treated by her.

Again, thanks. I'll keep you posted.

>

> ,

>

> This is excellant news. I'm glad you'll be able to start the

Remicade. For

> me, it has been a godsend. I will say that for others, it's been a

nightmare

> with allergic reaction. That is one of the reasons they start you

at a low

> dose, and do the infusion over 2-3 hours initially. Even now, after

being on it

> for over a year, they still take the full 2 hours to infuse me.

> For me, it has really helped with the sarcoidosis induced arthritis,

in my

> spine, in my ribcage, my hands and feet. It hasn't slowed down the

cartlidge

> deformation that is happening in my fingers and feet-- but at least

the pain is

> gone.

> It's also made it possible for me to get off my oxygen during the day.

> You will need to be on Methotrexate with it--they work hand in hand.

You

> will also need Folic Acid 1mg daily, so that you don't develop anemias.

> It's essential to get a CBC monthly, so that they know if you start

having

> any signs of leukemia or lymphoma-- as well as an LFT- liver

function tests each

> month. That way if a problem starts to develop- it can be addressed

before

> it gets out of hand.

> I do want to stress-- if you feel you are getting sick, a cold,

respiratory

> infection, the flu-- get in to see the MD. When they blow you off

and tell you

> to see how you're doing in a couple of days--explain that you are under

> intense imunosuppressant drug treatment, and that you can't wait to

see what

> happens in a day or two. If you put it off, you can develop serious

infections. My

> MD has me keep an antibiotic, as well as the one for the flu--on

hand--so

> that if I get sick on a Friday, I can start treatment, and get into

her on

> Monday.

>

> Take care,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

Yea, I love it because they talk about sarcoid, but you notice that is never the final diagnosis. You know why don't you.....it isn't curable///////////Conniewendy_cidp wrote: Has anyone had tarsal tunnel syndrome - that's like carpal tunnel butin your ankle. I was just diagnosed and don't know much about it.Can't believe I have yet ANOTHER odd problem. My family doctor can'tbelieve it either. I wonder if all these inflammatory problems arerelated to sarcoidosis or just coincidence?

By the way, did anyone seethe TV show House last night? They thought they had 2 sarcoidpatients. They treated them with methotrexate and were discouragedthat they didn't show improvement after a few hours. Too funny.- __________________________________________________