Re: Seizures and sarc

[Guest guest]

). Interesting with the

cyst though, as a cyst was the only noteworthy feature they found in an

MRI of my brain a year ago after a grand mal seizure (that was before I

was diagnosed with sarcoidosis). They've just done a new MRI on my

brain (after a second seizure 2 months ago) and I'm speaking to Neuro on

Monday to get the results. I don't know what I'm more afraid of now -

that they find something unexpected, or that they finally confirm

neurosarcoidosis... I've read several times that neurosarcoidosis

associated with seizures "doesn't have a very good prognosis" - with no

further explanation. Kinda leaves you feeling like a nervous wreck.

Darian,

This is an excellant site that has a great article and treatment advice for NS with Epilepsy and seizures. Print it out and take it with you to your appt on Monday.

http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html

For me, it explains the temperature control issues I have in not being able to regulate my body temperature, as well as some other issues in the "parenchyml (sp) system.

Hope this helps,

Tracie

NS Co-owner/moderator

[Guest guest]

Tracie,I can't regulate my temperature either. Usually in evening or late afternoon I will go from sweats to freezing in a matter of seconds. Varies how long it lasts but is very uncomfortable. I keep a fan and blanket close by.Blessings,Beckytiodaat@... wrote: In a message dated 12/9/06 1:32:38 PM Pacific Standard Time, darian (AT) dajode (DOT) com writes: ). Interesting with the cyst though, as a cyst was the only noteworthy feature they found in an MRI of my brain a year ago after a grand mal seizure (that was before I was diagnosed with sarcoidosis). They've just done a new MRI on my brain (after a second seizure 2 months ago) and I'm speaking to Neuro on Monday to get the results. I don't know what I'm more afraid of now - that they find something unexpected, or that they finally confirm

neurosarcoidosis... I've read several times that neurosarcoidosis associated with seizures "doesn't have a very good prognosis" - with no further explanation. Kinda leaves you feeling like a nervous wreck. Darian, This is an excellant site that has a great article and treatment advice for NS with Epilepsy and seizures. Print it out and take it with you to your appt on Monday. http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html For me, it explains the temperature control issues I have in not being able to regulate my body temperature, as well as some other

issues in the "parenchyml (sp) system. Hope this helps, Tracie NS Co-owner/moderator

Need a quick answer? Get one in minutes from people who know. Ask your question on

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[Guest guest]

Hi Becky, I have had the same issues with the regulation of body temperature, too. I thought it was maybe Premenoposal (sp?) , but I saw the gyno last week and she said it was too early for that. I am freezing cold a lot of the time but then I go to roasting hot the next minute. Go figure.....sarc or what?Debbie T.Co-moderatorMac Tosh wrote: Tracie,I can't regulate my temperature either. Usually in evening or late afternoon I will go from sweats to freezing in a matter of seconds. Varies how long it lasts but is very uncomfortable. I keep a fan and blanket close by.Blessings,Beckytiodaat@... wrote: In a message dated 12/9/06 1:32:38 PM Pacific Standard Time, darian (AT) dajode (DOT) com writes: ). Interesting with the cyst though, as a cyst was the only noteworthy feature they found in an MRI of my brain a

year ago after a grand mal seizure (that was before I was diagnosed with sarcoidosis). They've just done a new MRI on my brain (after a second seizure 2 months ago) and I'm speaking to Neuro on Monday to get the results. I don't know what I'm more afraid of now - that they find something unexpected, or that they finally confirm neurosarcoidosis... I've read several times that neurosarcoidosis associated with seizures "doesn't have a very good prognosis" - with no further explanation. Kinda leaves you feeling like a nervous wreck. Darian, This is an excellant site that has a great article and

treatment advice for NS with Epilepsy and seizures. Print it out and take it with you to your appt on Monday. http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html For me, it explains the temperature control issues I have in not being able to regulate my body temperature, as well as some other issues in the "parenchyml (sp) system. Hope this helps, Tracie NS Co-owner/moderator Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. __________________________________________________

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Hi Debbie,I appreciate your reply. I had a total hysterectomy (inc ovaries) back in 1999 b/c of a large benign intracervical tumor (now I wonder if was sarcoid related). The mass grew so big and so quickly that it embedded my right ureter in it. The gyn oncologist surgeon (large cancer hospital in Tampa, Florida) told me they had never seen one this large in this area that was benign. He told me I was very lucky and to really watch my body and pay attn to any weird things in the future. I was dx with sarcoid in 1994 so already knew about that. I didn't have any hot flashes at all after the surgery. This temp intolerance is strange in that it will literally change in minutes. The latest thing is that I'm noticing the tip of my tongue is numb and tingly feeling. This has been going on for the past several days. Doesn't hurt. But my left buttock and left foot hurt so bad for several hours the past couple of days that I actually cried. I took my vicodin ES and that did take

the edge off. But it was horrendous pain. No pain in my leg...it skips to my foot from my buttock. This doesn't sound like sciatia and I have no shooting pain. It's a deep down inside burning and aching pain. I have been on the Cellcept (now 500mg twice a day) for almost 3 weeks. I'm on Prednisone 20md a day (2 1/2 yrs now). Thanks for listening.Blessings,BeckyDebbie wrote: Hi Becky, I have had the same issues with the regulation of body temperature,

too. I thought it was maybe Premenoposal (sp?) , but I saw the gyno last week and she said it was too early for that. I am freezing cold a lot of the time but then I go to roasting hot the next minute. Go figure.....sarc or what?Debbie T.Co-moderatorMac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Tracie,I can't regulate my temperature either. Usually in evening or late afternoon I will go from sweats to freezing in a matter of seconds. Varies how long it lasts but is very uncomfortable. I keep a fan and blanket close by.Blessings,Beckytiodaat (AT) aol (DOT) com wrote: In a message dated 12/9/06 1:32:38 PM Pacific Standard Time, darian (AT) dajode (DOT) com writes: ). Interesting with the cyst though, as a cyst was the only noteworthy feature they found in an MRI of my brain a year ago after a grand mal seizure (that was before I was diagnosed with sarcoidosis). They've just done a new MRI on my brain (after a second seizure 2

months ago) and I'm speaking to Neuro on Monday to get the results. I don't know what I'm more afraid of now - that they find something unexpected, or that they finally confirm neurosarcoidosis... I've read several times that neurosarcoidosis associated with seizures "doesn't have a very good prognosis" - with no further explanation. Kinda leaves you feeling like a nervous wreck. Darian, This is an excellant site that has a great article and treatment advice for NS with Epilepsy and seizures. Print it out and take it with you to your appt on Monday.

http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html For me, it explains the temperature control issues I have in not being able to regulate my body temperature, as well as some other issues in the "parenchyml (sp) system. Hope this helps, Tracie NS Co-owner/moderator Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. __________________________________________________