Re: Recently diagnosed with Neurosarcoidosis-What to do about pain?

[Guest guest]

Hi , Yes a lot of these symptoms sound very familiar, I have the pain all over the body, like pins, and the shooting pain as well, My doctor put me on Lyrica, and it had helped a lot, of course I'm on many other drugs as well, restless legs, trouble sleeping do to symptoms, also Plaquanil and Methotrexate to treat the Sarcoid, I am now trying to find a way to get Remicade, the insurance turned us down 3 times, we are now into the 4th appeal, and we've ask the drug company Centacor to help us as well. You have to treat the disease as well as the symptoms!, Good luck, keep at them until they are able to make you feel better. We have several great articles on Sarcoid if you scroll down to the bottom of the page you feel find a link that will lead you to many articles. Please keep us informed. Marla

I've been suffering for about 10 years now with pins & needles from

my toes to my chest and from my fingers to my neck, bone grinding

pain in every joint, especially my hip sockets, stabbing pains

through out every muscle, electrical jolts up and down my spine

through to my legs, arms and head, facial palsy, tremors, urinary

hesitency and urgency, muscle spasams throughout my body, headaches,

blurry vision, buzzing crackle in my ears, burning pain all over my

skin, a strange painful stiffness in my spine and muscles.

Well, at first I was diagnosed as having too much stress in my life;

then diagnosed as depressed and psychotic.

Then I had a seizure, a spinal tap was done and was diagnosed with

neuro-lyme disease, spinal meningites and possible multiple sclerosis.

After a year of IV & oral antibiotics I was still not well. I

continued my search for an answer; which ended up being Multiple

Sclerosis. I was treated with Copaxone with no relief, but many

different doctors didn't want to try anything else because they

questioned my diagnosis, but did nothing to find answers to their

questions.

I've found a new neurologist who has sent me for numerous tests and

he comes up with Multiple Sclerosis with a twist. I also have

neurosarcoidosis. He's been trying to treat the pain with different

anti-seizure, anti-convulsants, diabetic type meds, restless leg

syndrome meds, anti-anxiety and depression meds; to no avail. The

side effects are horrible and cause more problems. Has anyone found

anything the helps with the kinds of pains I've described above?

Thanks,

--

[Guest guest]

hi i was sorry to read yor email you have been throug a lot i have had neurosarcodosis for 5 years i live in england an go to a hospital in london and sothampton your ear problem is i expect tinnutus which i have i am sorry but ther does not seem a cure i have seen a hearing threpist and have purchased a tinntus relaxer that i use at night i take predisolon ,azathioprine,metformine,glicazine,amitriptyline which helps me sleep and 2 300q co-codamol to help me sleep and for the pain i also take provigal to give me energy i feel o.k. in the morning but unwell late afternoon and evenings i am shaking all the time and feel lumps in my back but the buzzing in my head never stops i hope the tinnus relaxer is great i use this evey night and it realy helps i wish you good luck with your sarch for reliefMarla Bramer wrote: Hi , Yes a lot of these symptoms sound very familiar, I have the pain all over the body, like pins, and the shooting pain as well, My doctor put me on Lyrica, and it had helped a lot, of course I'm on many other drugs as well, restless legs, trouble sleeping do to symptoms, also Plaquanil and Methotrexate to treat the Sarcoid, I am now trying to find a way to get Remicade, the insurance turned us down 3 times, we are now into the 4th appeal, and we've ask the drug company Centacor to help us as well. You have to treat the disease as well as the symptoms!, Good luck, keep at them until they are able to make you feel better. We have

several great articles on Sarcoid if you scroll down to the bottom of the page you feel find a link that will lead you to many articles. Please keep us informed. Marla On Wed, May 7, 2008 at 2:22 PM, <gabbycats (AT) yahoo (DOT) com> wrote: I've been suffering for about 10 years now with pins & needles from my toes to my chest and from my fingers to my neck, bone grinding pain in every joint, especially my hip sockets, stabbing pains through out every muscle, electrical jolts up and down my spine through to my legs, arms and head, facial palsy, tremors, urinary hesitency and urgency, muscle spasams throughout my body, headaches, blurry vision, buzzing crackle in my ears, burning pain all over my

skin, a strange painful stiffness in my spine and muscles.Well, at first I was diagnosed as having too much stress in my life; then diagnosed as depressed and psychotic.Then I had a seizure, a spinal tap was done and was diagnosed with neuro-lyme disease, spinal meningites and possible multiple sclerosis.After a year of IV & oral antibiotics I was still not well. I continued my search for an answer; which ended up being Multiple Sclerosis. I was treated with Copaxone with no relief, but many different doctors didn't want to try anything else because they questioned my diagnosis, but did nothing to find answers to their questions.I've found a new neurologist who has sent me for numerous tests and he comes up with Multiple Sclerosis with a twist. I also have neurosarcoidosis. He's been trying to treat the pain with different anti-seizure, anti-convulsants, diabetic type meds, restless leg

syndrome meds, anti-anxiety and depression meds; to no avail. The side effects are horrible and cause more problems. Has anyone found anything the helps with the kinds of pains I've described above?Thanks,--

[Guest guest]

hi i was sorry to read yor email you have been throug a lot i have had neurosarcodosis for 5 years i live in england an go to a hospital in london and sothampton your ear problem is i expect tinnutus which i have i am sorry but ther does not seem a cure i have seen a hearing threpist and have purchased a tinntus relaxer that i use at night i take predisolon ,azathioprine,metformine,glicazine,amitriptyline which helps me sleep and 2 300q co-codamol to help me sleep and for the pain i also take provigal to give me energy i feel o.k. in the morning but unwell late afternoon and evenings i am shaking all the time and feel lumps in my back but the buzzing in my head never stops i hope the tinnus relaxer is great i use this evey night and it realy helps i wish you good luck with your sarch for reliefMarla Bramer wrote: Hi , Yes a lot of these symptoms sound very familiar, I have the pain all over the body, like pins, and the shooting pain as well, My doctor put me on Lyrica, and it had helped a lot, of course I'm on many other drugs as well, restless legs, trouble sleeping do to symptoms, also Plaquanil and Methotrexate to treat the Sarcoid, I am now trying to find a way to get Remicade, the insurance turned us down 3 times, we are now into the 4th appeal, and we've ask the drug company Centacor to help us as well. You have to treat the disease as well as the symptoms!, Good luck, keep at them until they are able to make you feel better. We have

several great articles on Sarcoid if you scroll down to the bottom of the page you feel find a link that will lead you to many articles. Please keep us informed. Marla On Wed, May 7, 2008 at 2:22 PM, <gabbycats (AT) yahoo (DOT) com> wrote: I've been suffering for about 10 years now with pins & needles from my toes to my chest and from my fingers to my neck, bone grinding pain in every joint, especially my hip sockets, stabbing pains through out every muscle, electrical jolts up and down my spine through to my legs, arms and head, facial palsy, tremors, urinary hesitency and urgency, muscle spasams throughout my body, headaches, blurry vision, buzzing crackle in my ears, burning pain all over my

skin, a strange painful stiffness in my spine and muscles.Well, at first I was diagnosed as having too much stress in my life; then diagnosed as depressed and psychotic.Then I had a seizure, a spinal tap was done and was diagnosed with neuro-lyme disease, spinal meningites and possible multiple sclerosis.After a year of IV & oral antibiotics I was still not well. I continued my search for an answer; which ended up being Multiple Sclerosis. I was treated with Copaxone with no relief, but many different doctors didn't want to try anything else because they questioned my diagnosis, but did nothing to find answers to their questions.I've found a new neurologist who has sent me for numerous tests and he comes up with Multiple Sclerosis with a twist. I also have neurosarcoidosis. He's been trying to treat the pain with different anti-seizure, anti-convulsants, diabetic type meds, restless leg

syndrome meds, anti-anxiety and depression meds; to no avail. The side effects are horrible and cause more problems. Has anyone found anything the helps with the kinds of pains I've described above?Thanks,--

[Guest guest]

Finally, someone like me!

I was diagnosed with Neurosarcoidosis with Muliple sclerosis features. The doctors are not sure which came first or which is worse.

I have already been treated for the depression and I take Prozac every day to keep it at bay.

I am on Cellcept and IV Immunoglobulins once a month to control my immune problems. I get B-12 injections every 3 weeks and I take Topamax for the headaches. The muscle and bone pain did not get better until I had been taking the IVIG for about 2 months and it slowly went away. I am working full time now and my vision is back to baseline.

You just have to get the right combination of drugs that work for you. It took 2 years of mixtures and combinations for us to get it right. So many pills, so much steroids! I was on IV steroids for almost 3 years straight! I was just weaned off in January.

I am sorry to hear of your pain. I have taken Neurontin in the past when the pain was the worse and I hear that Lyrica is good for the nerve pain as well. Cymbalta works for a friend of mine who has tried everything on the market. She is finally happy with it.

Thanks for your posting, . I don't feel like such an outcast anymore. Thank you, thank you, karla

Recently diagnosed with Neurosarcoidosis-What to do about pain?

I've been suffering for about 10 years now with pins & needles from my toes to my chest and from my fingers to my neck, bone grinding pain in every joint, especially my hip sockets, stabbing pains through out every muscle, electrical jolts up and down my spine through to my legs, arms and head, facial palsy, tremors, urinary hesitency and urgency, muscle spasams throughout my body, headaches, blurry vision, buzzing crackle in my ears, burning pain all over my skin, a strange painful stiffness in my spine and muscles.Well, at first I was diagnosed as having too much stress in my life; then diagnosed as depressed and psychotic.Then I had a seizure, a spinal tap was done and was diagnosed with neuro-lyme disease, spinal meningites and possible multiple sclerosis.After a year of IV & oral antibiotics I was still not well. I continued my search for an answer; which ended up being

Multiple Sclerosis. I was treated with Copaxone with no relief, but many different doctors didn't want to try anything else because they questioned my diagnosis, but did nothing to find answers to their questions.I've found a new neurologist who has sent me for numerous tests and he comes up with Multiple Sclerosis with a twist. I also have neurosarcoidosis. He's been trying to treat the pain with different anti-seizure, anti-convulsants, diabetic type meds, restless leg syndrome meds, anti-anxiety and depression meds; to no avail. The side effects are horrible and cause more problems. Has anyone found anything the helps with the kinds of pains I've described above?Thanks,

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[Guest guest]

Hi, Jackie. I've been taking some time off the group due to a number of personal problems, but I've been trying to read the daily digests. I wondered if you were aware of the Neurosarcoidosis support group in the UK? Here is the web address if you are interested:

www.NeurosarcoidosisUK@.... I very sorry that you have also met the Sarc Monster, but this group will help you in the battle. Rose in Indiana

> I've been suffering for about 10 years now with pins & needles from > my toes to my chest and from my fingers to my neck, bone grinding > pain in every joint, especially my hip sockets, stabbing pains > through out every muscle, electrical jolts up and down my spine > through to my legs, arms and head, facial palsy, tremors, urinary > hesitency and urgency, muscle spasams throughout my body, headaches, > blurry vision, buzzing crackle in my ears, burning pain all over my > skin, a strange painful stiffness in my spine and muscles.> > Well, at first I was diagnosed as having too much stress in my life; > then diagnosed as depressed and psychotic.> > Then I had a seizure, a spinal tap was done and was diagnosed with > neuro-lyme disease, spinal meningites and possible multiple sclerosis.> > After a year of IV & oral antibiotics I was still not well. I > continued my search for an answer; which ended up being Multiple > Sclerosis. I was treated with Copaxone with no relief, but many > different doctors didn't want to try anything else because they > questioned my diagnosis, but did nothing to find answers to their > questions.> > I've found a new neurologist who has sent me for numerous tests and > he comes up with Multiple Sclerosis with a twist. I also have > neurosarcoidosis. He's been trying to treat the pain with different > anti-seizure, anti-convulsants, diabetic type meds, restless leg > syndrome meds, anti-anxiety and depression meds; to no avail. The > side effects are horrible and cause more problems. Has anyone found > anything the helps with the kinds of pains I've described above?> > Thanks,> > > > > > > > > > > > -->