Re: New to post

[Guest guest]

Tim,

There is a Mayo Clinic in ville, Florida. The Rochester Neuro team has been ranked number one in the country over the past eight years. They are great at solving riddles. Hang in there!!

Subject: New to postTo: Neurosarcoidosis Date: Sunday, January 17, 2010, 8:11 PM

I had never heard of sarcoid till 11months ago had a heart attack then drs said we need to talk after surgery , stayed in hosputal fo 2 weeks , to only find out i had sarcoid in my lungs and abdomen did biopsy , Ct . pet Ct the usual started treatment on prednisone stayed on it till 9 weeks ago said lungs were clear ok but in the mean time sarcoid came out on skin like gang busters but any way to make a long story short , sarcoid came back in lungs stage 2 found out last month , and in abdomen but since march last year have been having weakness on left side of body in arms and legs also sharp pains on right side of brain that will double me over some time , weakness on left side gets worse and stinging in hands and feet at times but the sharp pains on right side of brain , and headaches are worse my question is Drs in this area don,t seem to know much about neurosarcoidosis , closest hospital with top drs i go to is 78 miles away from my home

so besides running a bunch of tests how do you convince your dr that you have something else going on besides just sarcoid in you chest , also have dropped a ton of weight in march i was wearing a size 42 pants am now in 34 ,s pain in brain at times drives me crazy any advice or direction would be appreciated Tim In Florida -- Crenshaw

[Guest guest]

Dear Tim, I know exactly what you are saying, as I right I have numbness and tingling down my whole left side from  top of head to toes.  You need more then just Pred. it's a good drug and has it's place, I still get it once in awhile, but only IV as the tablets make me crazy.  For the skin, ya I have that too, I found when placed on Plaquanil the skin cleared up for awhile, but is certainly better.  For the neuro part I was put on Methotrexate, along with Plaquanil, and it worked really well for years, then the neuro broke through, I am now on Remicade, and when My liver went crazy, had to stop the Methotrexate, so was on only Plaquanil, and Remicade, My liver was OK, just fatty liver, because like so many of us, I gained a lot of weight fast.  My liver is doing good now, but the Remicade is not holding the symptoms back, I have trouble walking, and it's getting worse, so Doctor agreed to put me back on Methotrexate, but stop Plaquanil, WELL, the skin went crazy especially around my face and neck area worse on the left, but have it all over body, so now I am back on Plaquanil lower dose, Methotrexate, and Remicade, and I pray this does more for me, time will tell.

So what I'm trying to say here, is you need to see someone who is willing to be more aggressive with drug therapy. I am blessed, My Pulmonologist takes really good care of me, for everything.  I hope something will improve, there are many things I still have problems with.  Like the worse head pain lately, if it continues will have to do another CT or MRI. 

Talk to your doctor, if you scroll to the bottom of the emails you will find a place where you can get some facts about this medications, just print them out and take them with you to your Doctor.   I tell my doc a lot of things by just talking with this group. 

I hope I am helpful, and you can find some relief.  God Bless,Marla

 

I had never heard of sarcoid till 11months ago had a heart attack then drs said we need to talk after surgery , stayed in hosputal fo 2 weeks , to only find out i had sarcoid in my lungs and abdomen did biopsy , Ct . pet Ct the usual started treatment on prednisone stayed on it till 9 weeks ago said lungs were clear ok but in the mean time sarcoid came out on skin like gang busters but any way to make a long story short , sarcoid came back in lungs stage 2 found out last month , and in abdomen but since march last year have been having weakness on left side of body in arms and legs also sharp pains on right side of brain that will double me over some time , weakness on left side gets worse and stinging in hands and feet at times but the sharp pains on right side of brain , and headaches are worse my question is Drs in this area don,t seem to know much about neurosarcoidosis , closest hospital with top drs i go to is 78 miles away from my home so besides running a bunch of tests how do you convince your dr that you have something else going on besides just sarcoid in you chest , also have dropped a ton of weight in march i was wearing a size 42 pants am now in 34 ,s pain in brain at times drives me crazy any advice or direction would be appreciated  Tim In Florida  

-- Crenshaw

[Guest guest]

To Marla And Bill

 

Thanks for responding the past months since march have been crazy being blind side by this , its great to talk with others that have been there and know what its like thanks for advise and direction Tim In North Fla

 

Dear Tim, I know exactly what you are saying, as I right I have numbness and tingling down my whole left side from  top of head to toes.  You need more then just Pred. it's a good drug and has it's place, I still get it once in awhile, but only IV as the tablets make me crazy.  For the skin, ya I have that too, I found when placed on Plaquanil the skin cleared up for awhile, but is certainly better.  For the neuro part I was put on Methotrexate, along with Plaquanil, and it worked really well for years, then the neuro broke through, I am now on Remicade, and when My liver went crazy, had to stop the Methotrexate, so was on only Plaquanil, and Remicade, My liver was OK, just fatty liver, because like so many of us, I gained a lot of weight fast.  My liver is doing good now, but the Remicade is not holding the symptoms back, I have trouble walking, and it's getting worse, so Doctor agreed to put me back on Methotrexate, but stop Plaquanil, WELL, the skin went crazy especially around my face and neck area worse on the left, but have it all over body, so now I am back on Plaquanil lower dose, Methotrexate, and Remicade, and I pray this does more for me, time will tell.

So what I'm trying to say here, is you need to see someone who is willing to be more aggressive with drug therapy. I am blessed, My Pulmonologist takes really good care of me, for everything.  I hope something will improve, there are many things I still have problems with.  Like the worse head pain lately, if it continues will have to do another CT or MRI. 

Talk to your doctor, if you scroll to the bottom of the emails you will find a place where you can get some facts about this medications, just print them out and take them with you to your Doctor.   I tell my doc a lot of things by just talking with this group. 

I hope I am helpful, and you can find some relief.  God Bless,Marla

 

I had never heard of sarcoid till 11months ago had a heart attack then drs said we need to talk after surgery , stayed in hosputal fo 2 weeks , to only find out i had sarcoid in my lungs and abdomen did biopsy , Ct . pet Ct the usual started treatment on prednisone stayed on it till 9 weeks ago said lungs were clear ok but in the mean time sarcoid came out on skin like gang busters but any way to make a long story short , sarcoid came back in lungs stage 2 found out last month , and in abdomen but since march last year have been having weakness on left side of body in arms and legs also sharp pains on right side of brain that will double me over some time , weakness on left side gets worse and stinging in hands and feet at times but the sharp pains on right side of brain , and headaches are worse my question is Drs in this area don,t seem to know much about neurosarcoidosis , closest hospital with top drs i go to is 78 miles away from my home so besides running a bunch of tests how do you convince your dr that you have something else going on besides just sarcoid in you chest , also have dropped a ton of weight in march i was wearing a size 42 pants am now in 34 ,s pain in brain at times drives me crazy any advice or direction would be appreciated  Tim In Florida  

-- Crenshaw

-- Crenshaw

[Guest guest]

Tim,

Sarcoidosis is a diagnosis of elimination once it's past the pulmonary stage. What they are doing right now is making sure you don't have any other autoimmune processes going on-- ie. MS, Lupus, RA, etc. It is possible to have more than one issue going on.

Once they have a handle on what is going on in your brain they will be better able to offer different treatment options.

Neurontin and Lyrica seem to help the nerve pain-- but do take some time to build up in your system. In the meantime, you want to be looking at a couple of issues that can add to those problems.

Everyone in the group will tell you this is where I get into my hydration and sugar issues. Dehydration (we run a low grade fever constantly, and so we are constantly on the edge of dehydration) is a huge insult to our nerves and joints and ligaments and muscles. When our electrolytes are out of balance in the smallest amount, our bodies over react, and we are thrown into a pain cycle. Our muscles and ligaments are covered with a myelin sheath, and with sarc,= that sheath breaks down generally at the extremities and goes up to the brain, where in MS it goes from the spine to the extremities. If there isn't the right balance of electrolytes-- then the sheath or the ligaments and muscles rub against the sheath-- instead of being cushioned by it-- and the muscle spasms and shooting pain intensifies.

Our joints need to float in synovial fluid. We aren't floaters...

High blood sugars, refined sugar, gluten, high fructose corn syrup, and red meat-- all add to inflammation. Tilapia, the new "wonder" fish-- is loaded with Omega 6-- a PRO-inflammatory, so it's a no go. Salmon, Halibut, Trout are all anti-inflammatory. If you can afford it, get range free chicken or turkey. Corn fed beef and pork is ok in small amounts. If you can cut back or eliminate dairy (too many hormones and additives, as well as high lactaid acid content) will help the body and joint pain.

It helps to cut out one thing at a time, and see if you respond by feeling better. I started with dairy, and then cut back on the red meat, then the sweets. After a huge improvement in my pain levels, I started to reintroduce small amounts of red meat and dairy. I can handle small amounts, but if I overdo it-- I know right away! I just did another post on Milk Thistle and probiotics-- you'll want to read the posts-- and this info is in many posts in the MESSAGE ARCHIVES. The link is at the bottom section of this email page in a section called Neurosarcoidosis Community. You are welcome to search by topic, and also there are links to various medical articles that you can share with your MD's.

I so wish we didn't have any need to welcome you to our "family"-- but since we do- know you've found a bunch of people that can help you with your questions and with your journey.

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Mon, January 18, 2010 8:11:15 PMSubject: Re: New to post

To Marla And Bill

Thanks for responding the past months since march have been crazy being blind side by this , its great to talk with others that have been there and know what its like thanks for advise and direction Tim In North Fla

On Mon, Jan 18, 2010 at 10:01 AM, Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:

Dear Tim, I know exactly what you are saying, as I right I have numbness and tingling down my whole left side from top of head to toes. You need more then just Pred. it's a good drug and has it's place, I still get it once in awhile, but only IV as the tablets make me crazy. For the skin, ya I have that too, I found when placed on Plaquanil the skin cleared up for awhile, but is certainly better. For the neuro part I was put on Methotrexate, along with Plaquanil, and it worked really well for years, then the neuro broke through, I am now on Remicade, and when My liver went crazy, had to stop the Methotrexate, so was on only Plaquanil, and Remicade, My liver was OK, just fatty liver, because like so many of us, I gained a lot of weight fast. My liver is doing good now, but the Remicade is not holding the symptoms back, I have trouble walking, and it's getting worse, so Doctor agreed to put me back on Methotrexate, but

stop Plaquanil, WELL, the skin went crazy especially around my face and neck area worse on the left, but have it all over body, so now I am back on Plaquanil lower dose, Methotrexate, and Remicade, and I pray this does more for me, time will tell. So what I'm trying to say here, is you need to see someone who is willing to be more aggressive with drug therapy. I am blessed, My Pulmonologist takes really good care of me, for everything. I hope something will improve, there are many things I still have problems with. Like the worse head pain lately, if it continues will have to do another CT or MRI. Talk to your doctor, if you scroll to the bottom of the emails you will find a place where you can get some facts about this medications, just print them out and take them with you to your Doctor. I tell my doc a lot of things by just talking with this group. I hope I am helpful, and you can find some

relief. God Bless,Marla

On Sun, Jan 17, 2010 at 7:11 PM, Tim Crenshaw <tim4343 (AT) gmail (DOT) com> wrote:

I had never heard of sarcoid till 11months ago had a heart attack then drs said we need to talk after surgery , stayed in hosputal fo 2 weeks , to only find out i had sarcoid in my lungs and abdomen did biopsy , Ct . pet Ct the usual started treatment on prednisone stayed on it till 9 weeks ago said lungs were clear ok but in the mean time sarcoid came out on skin like gang busters but any way to make a long story short , sarcoid came back in lungs stage 2 found out last month , and in abdomen but since march last year have been having weakness on left side of body in arms and legs also sharp pains on right side of brain that will double me over some time , weakness on left side gets worse and stinging in hands and feet at times but the sharp pains on right side of brain , and headaches are worse my question is Drs in this area don,t seem to know much about neurosarcoidosis , closest hospital with top drs i go to is 78 miles away from my home so

besides running a bunch of tests how do you convince your dr that you have something else going on besides just sarcoid in you chest , also have dropped a ton of weight in march i was wearing a size 42 pants am now in 34 ,s pain in brain at times drives me crazy any advice or direction would be appreciated Tim In Florida -- Crenshaw

-- Crenshaw

[Guest guest]

Are you still on any type of steroids such as Prednisone. Although this medicine will give you some relief it does come with some nasty side effects. Talk with your doctor regarding Remicaide. My husband had lesions on his face, bad inflammation (everywhere), and what he called "brain pain." The Remicaide has been a blessing to my husband because he skin lesions affected his self esteem. Many insurance companies will not approve this treatmen; however, there is no real treatment for this disease. It is unfortunate that there are not enough sarc specialists. Try the prednisone and it will help but you may gain back the weight. Good luck and God bless.

Subject: New to postTo: Neurosarcoidosis Date: Sunday, January 17, 2010, 9:11 PM

I had never heard of sarcoid till 11months ago had a heart attack then drs said we need to talk after surgery , stayed in hosputal fo 2 weeks , to only find out i had sarcoid in my lungs and abdomen did biopsy , Ct . pet Ct the usual started treatment on prednisone stayed on it till 9 weeks ago said lungs were clear ok but in the mean time sarcoid came out on skin like gang busters but any way to make a long story short , sarcoid came back in lungs stage 2 found out last month , and in abdomen but since march last year have been having weakness on left side of body in arms and legs also sharp pains on right side of brain that will double me over some time , weakness on left side gets worse and stinging in hands and feet at times but the sharp pains on right side of brain , and headaches are worse my question is Drs in this area don,t seem to know much about neurosarcoidosis , closest hospital with top drs i go to is 78 miles away from my home

so besides running a bunch of tests how do you convince your dr that you have something else going on besides just sarcoid in you chest , also have dropped a ton of weight in march i was wearing a size 42 pants am now in 34 ,s pain in brain at times drives me crazy any advice or direction would be appreciated Tim In Florida -- Crenshaw