Guest guest Posted April 12, 2010 Report Share Posted April 12, 2010 Seems like I have been away for awhile. I have missed birthday wishes and updates on the group. I am finally catching up on e-mails. Been a rough patch here since Easter for . Seems the meds may have gone into a failure and she had a series of seizures. The question still remains as to whether that marvelous time of the month for women caused any of the problem. It may just be a coincidence but the two issues seemed to arrive together. We are a bit better now, but the whole situation has made me a bit edgy as to what we do. The doctor did not seem to connect the two when I notified them of the problems and they have taken a wait & see attitude. I am just afraid that if it is a brewing issue then we can expect more of the same in a few weeks and I do not want her to suffer in this manner. Hope everyone is doing ok. At least the weather here on the East coast is starting to be spring like.Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2010 Report Share Posted April 12, 2010 Matt, Here is a site that you need to visit. The artiicle is by epilepsy specialists, and is about seizures and sarcoidosis. http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html This is a must read for both you and 's specialists. When I was working for an internal medicine MD years back-- we had a patient that came in daily for 2 1/2 wks out of each month-- for severe migraine and cluster headaches. They gave her all the seizure meds, the pain meds, the injectables-- and nothing would break the cycle. She ended up suffering from rebound headaches caused by the meds as they wore off. She and her husband owned an auto repair business in town, and the primary high voltage power lines -- the ones on the towers! ran directly over their shop. They finally moved from that shop and her headaches ceased. In the meantime, all her docs had decided it was "hormonal" and a hysterectomy would cure them. It didn't. With , have the docs done a spinal tap to make sure she doesn't have meningitis or encephalitis? That is one of the effects that sarc can create with NS. I do hope that you find some answers-- and my heart goes out to the both of you. I know that my husband hates it when I am suffering-- and he can't fix me. Men are programmed to fix-- whatever-- and the havoc that is on your soul when these things are happening I know has to be heart wrenching. Take care, Tracie NS Co-owner/moderator To: Neuro Sarc <Neurosarcoidosis >Sent: Mon, April 12, 2010 7:11:17 PMSubject: Catching Up Seems like I have been away for awhile. I have missed birthday wishes and updates on the group. I am finally catching up on e-mails. Been a rough patch here since Easter for . Seems the meds may have gone into a failure and she had a series of seizures. The question still remains as to whether that marvelous time of the month for women caused any of the problem. It may just be a coincidence but the two issues seemed to arrive together. We are a bit better now, but the whole situation has made me a bit edgy as to what we do. The doctor did not seem to connect the two when I notified them of the problems and they have taken a wait & see attitude. I am just afraid that if it is a brewing issue then we can expect more of the same in a few weeks and I do not want her to suffer in this manner. Hope everyone is doing ok. At least the weather here on the East coast is starting to be spring like.Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 Thanks for the information. Yes the docotors have done spinal tap on three separate occasions and have ruled out encepahlitis and menegitis. I will copy the article, read it and then give it to her doctors. It seems we were doing fairly well and then this. At first I thought it was maybe holiday stress of packing it off to the family for a whirlwind visit but that does not seem to be it, although it may have contributed. As you say men have to try to fix things and yes that would be so good if I could. This is one of those things I cant fix. Thanks again.MattSubject: Re: Catching UpTo: Neurosarcoidosis Date: Monday, April 12, 2010, 11:52 PM Matt, Here is a site that you need to visit. The artiicle is by epilepsy specialists, and is about seizures and sarcoidosis. http://professional s.epilepsy. com/page/ inflammatory_ sardcoidosis. html This is a must read for both you and 's specialists. When I was working for an internal medicine MD years back-- we had a patient that came in daily for 2 1/2 wks out of each month-- for severe migraine and cluster headaches. They gave her all the seizure meds, the pain meds, the injectables- - and nothing would break the cycle. She ended up suffering from rebound headaches caused by the meds as they wore off. She and her husband owned an auto repair business in town, and the primary high voltage power lines -- the ones on the towers! ran directly over their shop. They finally moved from that shop and her headaches ceased. In the meantime, all her docs had decided it was "hormonal" and a hysterectomy would cure them. It didn't. With , have the docs done a spinal tap to make sure she doesn't have meningitis or encephalitis? That is one of the effects that sarc can create with NS. I do hope that you find some answers-- and my heart goes out to the both of you. I know that my husband hates it when I am suffering-- and he can't fix me. Men are programmed to fix-- whatever-- and the havoc that is on your soul when these things are happening I know has to be heart wrenching. Take care, Tracie NS Co-owner/moderator From: D. <dmatt1960 (AT) yahoo (DOT) com>To: Neuro Sarc <Neurosarcoidosis@ yahoogroups. com>Sent: Mon, April 12, 2010 7:11:17 PMSubject: Catching Up Seems like I have been away for awhile. I have missed birthday wishes and updates on the group. I am finally catching up on e-mails. Been a rough patch here since Easter for . Seems the meds may have gone into a failure and she had a series of seizures. The question still remains as to whether that marvelous time of the month for women caused any of the problem. It may just be a coincidence but the two issues seemed to arrive together. We are a bit better now, but the whole situation has made me a bit edgy as to what we do. The doctor did not seem to connect the two when I notified them of the problems and they have taken a wait & see attitude. I am just afraid that if it is a brewing issue then we can expect more of the same in a few weeks and I do not want her to suffer in this manner. Hope everyone is doing ok. At least the weather here on the East coast is starting to be spring like.Matt Quote Link to comment Share on other sites More sharing options...
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