Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 , You having been pulling poison ivy up have you? Don't forget the dog can bring it in also, then all you have to do is pet the dog. Take care, Bill Werre ======================== " B. Fisher " wrote: > Wow! I'm not alone with this. Please do let me know if you find any > answers on this. I also get both the little spots. When I've looked at > them closely, it almost appears as if there are small white BBs under my > skin. Talk about itching! Gads it's enough to catch your attention. > > I also occasionally get the larger rashes, as you noted for Chuck. Please > keep us posted, and hope your trip goes well. > > Regards, > =jbf= > > B. Fisher > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 , You having been pulling poison ivy up have you? Don't forget the dog can bring it in also, then all you have to do is pet the dog. Take care, Bill Werre ======================== " B. Fisher " wrote: > Wow! I'm not alone with this. Please do let me know if you find any > answers on this. I also get both the little spots. When I've looked at > them closely, it almost appears as if there are small white BBs under my > skin. Talk about itching! Gads it's enough to catch your attention. > > I also occasionally get the larger rashes, as you noted for Chuck. Please > keep us posted, and hope your trip goes well. > > Regards, > =jbf= > > B. Fisher > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 , You having been pulling poison ivy up have you? Don't forget the dog can bring it in also, then all you have to do is pet the dog. Take care, Bill Werre ======================== " B. Fisher " wrote: > Wow! I'm not alone with this. Please do let me know if you find any > answers on this. I also get both the little spots. When I've looked at > them closely, it almost appears as if there are small white BBs under my > skin. Talk about itching! Gads it's enough to catch your attention. > > I also occasionally get the larger rashes, as you noted for Chuck. Please > keep us posted, and hope your trip goes well. > > Regards, > =jbf= > > B. Fisher > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Yes! That's it. I should stop trying to weed that natural area with those wonderful ivy beds! But they look so wonderful, just overgrown. Nothing a little tender loving care won't fix. (That and some Poison-Ivy-B-Gone!) My dog does occasionally bring in poison ivy. Yuck. Pet the dog and get a souvenir. But this is quite different. Nothing seems to help it. In fact one of my earliest signs (which I ignored at the time) was severe 'allergic' type reactions. Unfortunately we could find NO cause of this. Lots of tests, etc. Doctors just assumed it was (guess what? I'll give a hint: if you can't find the problem, blame the patient) ... anxiety. Real bad symptoms. I would have this wicked reaction all at once, with no common trigger. My face and around my eyes would swell terribly. My arms developed 'hive' type swellings. (Those symptoms would come and go several times a day). And on the palms of my hands, I got those awful small BB under the skin swellings. Oh, some around the base of my skull. Those were the most intense of the itching sites. Though annoying, I could ignore the rest of the symptoms. After about 6 months to a year, everything gradually disappeared. So, I shrugged it off. But the periodic BB shapes near the base of the skull still return during a very severe episode of symptoms. I personally thing there might be some very odd allergic reaction or infection that my body is fighting. None of the doctors can find any underlying cause. I've had LOTS of test to try to determine the cause. So, I'm into the " What-the-Hey! " mode, trying to move forward with life. However, I am obviously interested in the results / thoughts for any other patients. Is it related to MSA? I doubt it, since so few patients mentioned it in the past. Do I even have MSA? Remember, I am the first to admit that all I can say is that I have Primary Cerebellar Dysfunction. It appears to be degenerative. It also appears to be Sporadic (non-hereditary). But there could be an underlying common thread in action. Best wishes Bill. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Yes! That's it. I should stop trying to weed that natural area with those wonderful ivy beds! But they look so wonderful, just overgrown. Nothing a little tender loving care won't fix. (That and some Poison-Ivy-B-Gone!) My dog does occasionally bring in poison ivy. Yuck. Pet the dog and get a souvenir. But this is quite different. Nothing seems to help it. In fact one of my earliest signs (which I ignored at the time) was severe 'allergic' type reactions. Unfortunately we could find NO cause of this. Lots of tests, etc. Doctors just assumed it was (guess what? I'll give a hint: if you can't find the problem, blame the patient) ... anxiety. Real bad symptoms. I would have this wicked reaction all at once, with no common trigger. My face and around my eyes would swell terribly. My arms developed 'hive' type swellings. (Those symptoms would come and go several times a day). And on the palms of my hands, I got those awful small BB under the skin swellings. Oh, some around the base of my skull. Those were the most intense of the itching sites. Though annoying, I could ignore the rest of the symptoms. After about 6 months to a year, everything gradually disappeared. So, I shrugged it off. But the periodic BB shapes near the base of the skull still return during a very severe episode of symptoms. I personally thing there might be some very odd allergic reaction or infection that my body is fighting. None of the doctors can find any underlying cause. I've had LOTS of test to try to determine the cause. So, I'm into the " What-the-Hey! " mode, trying to move forward with life. However, I am obviously interested in the results / thoughts for any other patients. Is it related to MSA? I doubt it, since so few patients mentioned it in the past. Do I even have MSA? Remember, I am the first to admit that all I can say is that I have Primary Cerebellar Dysfunction. It appears to be degenerative. It also appears to be Sporadic (non-hereditary). But there could be an underlying common thread in action. Best wishes Bill. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Yes! That's it. I should stop trying to weed that natural area with those wonderful ivy beds! But they look so wonderful, just overgrown. Nothing a little tender loving care won't fix. (That and some Poison-Ivy-B-Gone!) My dog does occasionally bring in poison ivy. Yuck. Pet the dog and get a souvenir. But this is quite different. Nothing seems to help it. In fact one of my earliest signs (which I ignored at the time) was severe 'allergic' type reactions. Unfortunately we could find NO cause of this. Lots of tests, etc. Doctors just assumed it was (guess what? I'll give a hint: if you can't find the problem, blame the patient) ... anxiety. Real bad symptoms. I would have this wicked reaction all at once, with no common trigger. My face and around my eyes would swell terribly. My arms developed 'hive' type swellings. (Those symptoms would come and go several times a day). And on the palms of my hands, I got those awful small BB under the skin swellings. Oh, some around the base of my skull. Those were the most intense of the itching sites. Though annoying, I could ignore the rest of the symptoms. After about 6 months to a year, everything gradually disappeared. So, I shrugged it off. But the periodic BB shapes near the base of the skull still return during a very severe episode of symptoms. I personally thing there might be some very odd allergic reaction or infection that my body is fighting. None of the doctors can find any underlying cause. I've had LOTS of test to try to determine the cause. So, I'm into the " What-the-Hey! " mode, trying to move forward with life. However, I am obviously interested in the results / thoughts for any other patients. Is it related to MSA? I doubt it, since so few patients mentioned it in the past. Do I even have MSA? Remember, I am the first to admit that all I can say is that I have Primary Cerebellar Dysfunction. It appears to be degenerative. It also appears to be Sporadic (non-hereditary). But there could be an underlying common thread in action. Best wishes Bill. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 -hi, thanks,bll for your thoughts on my breathing problem, i also have noticed these spots that is being talked about they seem to come and go and are sometimes itchy, i get my wife to put a aftersun cream on these places, i get them on my back and arms and legss cheers woody-- In shydrager@y..., Werre wrote: > , > > You having been pulling poison ivy up have you? Don't forget the dog can > bring it in also, then all you have to do is pet the dog. > > Take care, Bill Werre > > ======================== > > " B. Fisher " wrote: > > > Wow! I'm not alone with this. Please do let me know if you find any > > answers on this. I also get both the little spots. When I've looked at > > them closely, it almost appears as if there are small white BBs under my > > skin. Talk about itching! Gads it's enough to catch your attention. > > > > I also occasionally get the larger rashes, as you noted for Chuck. Please > > keep us posted, and hope your trip goes well. > > > > Regards, > > =jbf= > > > > B. Fisher > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 -hi, thanks,bll for your thoughts on my breathing problem, i also have noticed these spots that is being talked about they seem to come and go and are sometimes itchy, i get my wife to put a aftersun cream on these places, i get them on my back and arms and legss cheers woody-- In shydrager@y..., Werre wrote: > , > > You having been pulling poison ivy up have you? Don't forget the dog can > bring it in also, then all you have to do is pet the dog. > > Take care, Bill Werre > > ======================== > > " B. Fisher " wrote: > > > Wow! I'm not alone with this. Please do let me know if you find any > > answers on this. I also get both the little spots. When I've looked at > > them closely, it almost appears as if there are small white BBs under my > > skin. Talk about itching! Gads it's enough to catch your attention. > > > > I also occasionally get the larger rashes, as you noted for Chuck. Please > > keep us posted, and hope your trip goes well. > > > > Regards, > > =jbf= > > > > B. Fisher > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 -john, i like your thoughts on a under lying infection i really think that having these illneses we all call msa (which is fine) but its a broad sheet to many a brain type of illness, a slide rule if you like with msa being at the centre and parkinson's at one end and psp at the other, but wereever we are on that slide rule we are prone to underlying illness. i think if i we find it hard to fight off even the simplest of viris and therefore end up with not only the msa-type problems but also these other funny/akward even anoying events -- In shydrager@y..., " B. Fisher " wrote: > Yes! That's it. I should stop trying to weed that natural area with those > wonderful ivy beds! But they look so wonderful, just overgrown. Nothing a > little tender loving care won't fix. (That and some Poison-Ivy-B- Gone!) > > My dog does occasionally bring in poison ivy. Yuck. Pet the dog and get a > souvenir. But this is quite different. Nothing seems to help it. In fact > one of my earliest signs (which I ignored at the time) was severe 'allergic' > type reactions. Unfortunately we could find NO cause of this. Lots of > tests, etc. Doctors just assumed it was (guess what? I'll give a hint: if > you can't find the problem, blame the patient) ... anxiety. > > Real bad symptoms. I would have this wicked reaction all at once, with no > common trigger. My face and around my eyes would swell terribly. My arms > developed 'hive' type swellings. (Those symptoms would come and go several > times a day). And on the palms of my hands, I got those awful small BB > under the skin swellings. Oh, some around the base of my skull. Those > were the most intense of the itching sites. Though annoying, I could ignore > the rest of the symptoms. > > After about 6 months to a year, everything gradually disappeared. So, I > shrugged it off. But the periodic BB shapes near the base of the skull > still return during a very severe episode of symptoms. I personally thing > there might be some very odd allergic reaction or infection that my body is > fighting. > > None of the doctors can find any underlying cause. I've had LOTS of test to > try to determine the cause. So, I'm into the " What-the-Hey! " mode, trying > to move forward with life. However, I am obviously interested in the > results / thoughts for any other patients. > > Is it related to MSA? I doubt it, since so few patients mentioned it in the > past. > > Do I even have MSA? Remember, I am the first to admit that all I can say is > that I have Primary Cerebellar Dysfunction. It appears to be degenerative. > It also appears to be Sporadic (non-hereditary). But there could be an > underlying common thread in action. > > Best wishes Bill. > > > Regards, > =jbf= > > B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 -john, i like your thoughts on a under lying infection i really think that having these illneses we all call msa (which is fine) but its a broad sheet to many a brain type of illness, a slide rule if you like with msa being at the centre and parkinson's at one end and psp at the other, but wereever we are on that slide rule we are prone to underlying illness. i think if i we find it hard to fight off even the simplest of viris and therefore end up with not only the msa-type problems but also these other funny/akward even anoying events -- In shydrager@y..., " B. Fisher " wrote: > Yes! That's it. I should stop trying to weed that natural area with those > wonderful ivy beds! But they look so wonderful, just overgrown. Nothing a > little tender loving care won't fix. (That and some Poison-Ivy-B- Gone!) > > My dog does occasionally bring in poison ivy. Yuck. Pet the dog and get a > souvenir. But this is quite different. Nothing seems to help it. In fact > one of my earliest signs (which I ignored at the time) was severe 'allergic' > type reactions. Unfortunately we could find NO cause of this. Lots of > tests, etc. Doctors just assumed it was (guess what? I'll give a hint: if > you can't find the problem, blame the patient) ... anxiety. > > Real bad symptoms. I would have this wicked reaction all at once, with no > common trigger. My face and around my eyes would swell terribly. My arms > developed 'hive' type swellings. (Those symptoms would come and go several > times a day). And on the palms of my hands, I got those awful small BB > under the skin swellings. Oh, some around the base of my skull. Those > were the most intense of the itching sites. Though annoying, I could ignore > the rest of the symptoms. > > After about 6 months to a year, everything gradually disappeared. So, I > shrugged it off. But the periodic BB shapes near the base of the skull > still return during a very severe episode of symptoms. I personally thing > there might be some very odd allergic reaction or infection that my body is > fighting. > > None of the doctors can find any underlying cause. I've had LOTS of test to > try to determine the cause. So, I'm into the " What-the-Hey! " mode, trying > to move forward with life. However, I am obviously interested in the > results / thoughts for any other patients. > > Is it related to MSA? I doubt it, since so few patients mentioned it in the > past. > > Do I even have MSA? Remember, I am the first to admit that all I can say is > that I have Primary Cerebellar Dysfunction. It appears to be degenerative. > It also appears to be Sporadic (non-hereditary). But there could be an > underlying common thread in action. > > Best wishes Bill. > > > Regards, > =jbf= > > B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 -john, i like your thoughts on a under lying infection i really think that having these illneses we all call msa (which is fine) but its a broad sheet to many a brain type of illness, a slide rule if you like with msa being at the centre and parkinson's at one end and psp at the other, but wereever we are on that slide rule we are prone to underlying illness. i think if i we find it hard to fight off even the simplest of viris and therefore end up with not only the msa-type problems but also these other funny/akward even anoying events -- In shydrager@y..., " B. Fisher " wrote: > Yes! That's it. I should stop trying to weed that natural area with those > wonderful ivy beds! But they look so wonderful, just overgrown. Nothing a > little tender loving care won't fix. (That and some Poison-Ivy-B- Gone!) > > My dog does occasionally bring in poison ivy. Yuck. Pet the dog and get a > souvenir. But this is quite different. Nothing seems to help it. In fact > one of my earliest signs (which I ignored at the time) was severe 'allergic' > type reactions. Unfortunately we could find NO cause of this. Lots of > tests, etc. Doctors just assumed it was (guess what? I'll give a hint: if > you can't find the problem, blame the patient) ... anxiety. > > Real bad symptoms. I would have this wicked reaction all at once, with no > common trigger. My face and around my eyes would swell terribly. My arms > developed 'hive' type swellings. (Those symptoms would come and go several > times a day). And on the palms of my hands, I got those awful small BB > under the skin swellings. Oh, some around the base of my skull. Those > were the most intense of the itching sites. Though annoying, I could ignore > the rest of the symptoms. > > After about 6 months to a year, everything gradually disappeared. So, I > shrugged it off. But the periodic BB shapes near the base of the skull > still return during a very severe episode of symptoms. I personally thing > there might be some very odd allergic reaction or infection that my body is > fighting. > > None of the doctors can find any underlying cause. I've had LOTS of test to > try to determine the cause. So, I'm into the " What-the-Hey! " mode, trying > to move forward with life. However, I am obviously interested in the > results / thoughts for any other patients. > > Is it related to MSA? I doubt it, since so few patients mentioned it in the > past. > > Do I even have MSA? Remember, I am the first to admit that all I can say is > that I have Primary Cerebellar Dysfunction. It appears to be degenerative. > It also appears to be Sporadic (non-hereditary). But there could be an > underlying common thread in action. > > Best wishes Bill. > > > Regards, > =jbf= > > B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 , We think you can claim probable or possible MSA like many here. Best to accept that you may never have an exact diagnoses and go on with treating the symptoms as best you can. With the recent heat wave here in the East, it could certainly be some sort of heat rash, an allergic reaction, or even a side effect of some medicine. I agree with whoever told you yesterday, if it stays more than a couple of days, see a dermatologist. Your doctors are the safest bet with MSA. And you know by now that you can't ignore the small stuff once you have MSA and you need to form a team with your doctors. Charlotte did get heat rash especially during warm periods on any moist area where skin rubbed skin. So in warm weather: I gave her more showers; dryed her very carefully; and powered her with the medicated powder. She did get small bumps (smaller than a BB however) and I think it was poison ivy as we have fought it for 28 years here. The dog brings it in and everyone has it at some time during the summer. If it is hives however, you need to consider side effects. Has the doctor actually seen the rash? If it will not last until you get to the doctor take a Polaroid of it and take that to them. Hives are generally slightly raised (but don't have to be) red splotches of various sizes, which itch and if you scratch them they grow. Note, anxiety can cause hives also. Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 , We think you can claim probable or possible MSA like many here. Best to accept that you may never have an exact diagnoses and go on with treating the symptoms as best you can. With the recent heat wave here in the East, it could certainly be some sort of heat rash, an allergic reaction, or even a side effect of some medicine. I agree with whoever told you yesterday, if it stays more than a couple of days, see a dermatologist. Your doctors are the safest bet with MSA. And you know by now that you can't ignore the small stuff once you have MSA and you need to form a team with your doctors. Charlotte did get heat rash especially during warm periods on any moist area where skin rubbed skin. So in warm weather: I gave her more showers; dryed her very carefully; and powered her with the medicated powder. She did get small bumps (smaller than a BB however) and I think it was poison ivy as we have fought it for 28 years here. The dog brings it in and everyone has it at some time during the summer. If it is hives however, you need to consider side effects. Has the doctor actually seen the rash? If it will not last until you get to the doctor take a Polaroid of it and take that to them. Hives are generally slightly raised (but don't have to be) red splotches of various sizes, which itch and if you scratch them they grow. Note, anxiety can cause hives also. Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 , We think you can claim probable or possible MSA like many here. Best to accept that you may never have an exact diagnoses and go on with treating the symptoms as best you can. With the recent heat wave here in the East, it could certainly be some sort of heat rash, an allergic reaction, or even a side effect of some medicine. I agree with whoever told you yesterday, if it stays more than a couple of days, see a dermatologist. Your doctors are the safest bet with MSA. And you know by now that you can't ignore the small stuff once you have MSA and you need to form a team with your doctors. Charlotte did get heat rash especially during warm periods on any moist area where skin rubbed skin. So in warm weather: I gave her more showers; dryed her very carefully; and powered her with the medicated powder. She did get small bumps (smaller than a BB however) and I think it was poison ivy as we have fought it for 28 years here. The dog brings it in and everyone has it at some time during the summer. If it is hives however, you need to consider side effects. Has the doctor actually seen the rash? If it will not last until you get to the doctor take a Polaroid of it and take that to them. Hives are generally slightly raised (but don't have to be) red splotches of various sizes, which itch and if you scratch them they grow. Note, anxiety can cause hives also. Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2002 Report Share Posted April 26, 2002 Greetings Belinda! I am open to any and all suggestions. I was not taking any medications at the time (unlike now). No changes in my schedule (good or bad). Decreased stress if anything. Like I say, never did figure it out. It was VERY bad for a few days. But it mostly cleared up on it's own. I can outlast / ignore most of it at this point. But thanks for the suggestion. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2002 Report Share Posted April 26, 2002 , Anne is using a drug against itching. Helps very well. Called Tavegil here. Will see if I can find more details on it. Regards, Timo > > I am open to any and all suggestions. I was not taking any medications at > the time (unlike now). No changes in my schedule (good or bad). Decreased > stress if anything. Like I say, never did figure it out. It was VERY bad > for a few days. But it mostly cleared up on it's own. I can outlast / > ignore most of it at this point. > > But thanks for the suggestion. > > > Regards, > =jbf= > > B. Fisher > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 A week or so ago I put out a query on this subject. The resulting responses have been quite varied and not suggestive of a specific theme. For what it is worth, I have cut and pasted from the digests below ten of the responses all together in one long message so you can draw your own conclusions. Thanks to all who responded to my query. Message: 25 Date: Mon, 22 Apr 2002 16:23:47 -0500 Subject: RE: Rashes and MSA , I think I've heard that the parasympathetic system is affected in MSA and that this can contribute to a condition my brother frequently experiences, which is a red, rash appearance on his hands and extremities. Jerry Cash Message: 24 Date: Mon, 22 Apr 2002 17:21:17 -0400 Subject: Re: Rashes and MSA , I think the major source of this is not so much a rash as dry skin. Dehydration can play a big role here. The other thing is the lack of movement, if I did not wash Charlotte often she would get a heat rash when the skin was constantly moist, especially in summer. Take care, Bill Message: 24 Date: Mon, 22 Apr 2002 22:35:56 -0500 Subject: Re: Rashes and MSA What kind of rash are you talking about. Elmer had red splotches on his face which was like a dry eczema. I think I've got a picture that shows it well if you want me to send it to you so you can compare if you need to. Just let me know. Sally Message: 1 Date: Mon, 22 Apr 2002 21:58:14 -0700 Subject: Jerry- rashes ; pro-vigil; travelling Jerry - the rash you describe happens to me whenever I become too warm and is often the only way I know that I am too warm. It is not itchy but it feels odd as though my skin is on too tight - nothing relieves this but taking the time to cool down. Since the MSa I have not had any rashes even when in contact with items that would ordinarily have given me contact dermatitis - insect bites do not redden and swell into a bump, wounds too are devoid of the usual reddening around the edges. The signals that (I am guessing) ordinarily are sent out in reaction to irritation and pain do not seem to be responded too, or even sensed in the first place. In regard to the dry skin Bill is absolutely right, I have not perspired as a normal person would in over four years, making my skin very dry, without moisturizing or bathing I can only go 24 hours at most, then it itches unbearably (without any visible reddening). So I have to bathe orr shower using glycerine soap (coats skina and holds in moisturizer) and I moisturize generously with a very fatted (oily) moisturizer without completely towel drying. Every few days I soak in a warm tub of water with generous amounts of sea salt added (without perspiration, skin lacks the usual salt). The skin also exfoliates even less without perspiration, so I loofah vigorously (can't feel it much anyway) until my skin starts to pink up a bit. I do try to come to a more uniform skin colour (red, white and blue going in) but also watch my heart rate does not go over 100bpm, otherwise I tend to pass out withing minutes of getting out of the tub. I discussed Pro-vigil as an alternative to Dex-amphetamine for waking up, there are fewer side effects with the Dex-amphetamine, and Pro-vigil is not available in Canada. I'd also been told here and there that Duvoid would not be a good drug for long-term (I've taken it 6 mos), but there is a lack of any reason for that in published articles and am doing very well with it. I think it worth mentioning again that drinking more water raises blood pressure, that is now my standard reaction to that sinking/faint feeling and works very well, and there are no side effects to water. My BP does shoot up when lying down, so those nights it is very erratic I sleep sitting up (reclined), since I don't move when I sleep, this is not the least bit difficult (no side effects here either). - " keep it simple stupid " and " if it hurts don't do that " are always the best way to go. About travelling with MSA - bottom line - no one knows because no two of us are the same - if it makes life worthwhile to travel - for Pete's sake, do it! Illness is not a reason to hold back on enjoying what you can in life. I'm not nearly as frightened of dying as I am of not living. Take care of mind, body and spirit - just because you have this illness does not mean you neglect two out of three - and don't let anyone tell you to take it easy if you don't feel like it. You'll find clever ways to deal with your symptoms. aletta mes vancouver, bc Canada web: http://aletta.0catch.com Message: 4 Date: Tue, 23 Apr 2002 06:41:59 -0700 (PDT) Subject: Re: Rashes and MSA I am also very interested in finding out this same information. I have been fighting reoccuring rashes since my dilantin reaction since February. Right now, I look like I have poison oak/ivy covering my body, especially on my face and chest. Deborah aka Tenacity Charlotte, NC. Delivered-To: perrys@... Reply-To: " Sally Lesline " slesline@...> To: " Sennewald " perrys@...> Subject: Re: MSA and Rashes Date: Wed, 24 Apr 2002 21:50:08 -0500 X-Mailer: Microsoft Outlook Express 6.00.2600.0000 X-Note: This E-mail was scanned for spam & viruses by the servers at WTC Communications, Inc. If it's the dry scaly, but yet pimples, it may be contact dermatitis or MSA related. I think most have skin trouble but don't know if it's from being wet, clothing caught in folds, laying in one place to long, etc. The dry scale that looks like eczema is mostly on the face around the mouth. Scales in the hair is also common but again, it's hard to tell what it's from. Elmer had patches on his face, ears, and in his hair. We used cortisone on his face and behind his ears and shampooed his hair with a dandruff shampoo as often as we could. Just like everything else, the body controls have gone haywire for the skin. Also most don't get out in the sun and fresh air much so you know that's part of it. Could she be having a reaction to a drug. I've forgotten now which one but Elmer used to get rashes from one of his drugs. If I can help, please ask. I'm home with my baby grandson all day now but don't always get to the computer. By the time I pick up the 6 year old after school, it's all over for me. I think I'm getting old :>) Sally Message: 2 Date: Thu, 25 Apr 2002 02:07:22 -0500 Subject: Rashes and MSA In response to the question re rashes. I have recently posted about Chuck's little insect-bite like spots that itch like crazy, and stay red for a long time. Now, in one day, he developed two saucer-sized areas that look like bruises but have rough skin that also itch. These are on his legs, and the skin below it feels downright weird---sort of spongy. Right above the cute little subcutaneous muscle twitches. We are going to Mayo's this weekend so I hope someone can give him an answer other than that he has been " bitten by an arthropod " (pathologist report). As my son says, that means he could have been bitten by a shrimp! I suppose now they would say he has been kicked by a porcupine. Thanks for the question, Barbara Woodford (in Illinois) Message: 8 Date: Wed, 24 Apr 2002 22:04:11 -0000 Subject: Re: Rashes and MSA Barbara, The rash you describe sounds like hives. This MIGHT be caused by an allergy to one of the medications Chuck is taking. Be on the look out for other signs of medication allergy, especially throat tightening, which might be a sign of a serious reaction requiring immediate medical attention. Although Rob's the one with MSA, I had a rash similar to the first one you described Chuck having. I was in the hospital after a knew replacement and, of course, had been given tons of meds. The rash was like mosquito bites -- very itchy. It ultimately did go away and they never figured out what caused it. But it was VERY uncomfortable. Carol & Rob Message: 21 Date: Wed, 24 Apr 2002 22:35:00 -0400 Subject: RE: Rashes and MSA Wow! I'm not alone with this. Please do let me know if you find any answers on this. I also get both the little spots. When I've looked at them closely, it almost appears as if there are small white BBs under my skin. Talk about itching! Gads it's enough to catch your attention. I also occasionally get the larger rashes, as you noted for Chuck. Please keep us posted, and hope your trip goes well. Regards, =jbf= B. Fisher Message: 23 Date: Wed, 24 Apr 2002 22:59:11 -0400 Subject: Re: Rashes and MSA I'm not a doctor, but I read rashes in general can indicate problems of liver function, which should be checked out. Will be interested to see what they say on this. Cindy B. Message: 11 Date: Thu, 25 Apr 2002 04:52:22 -0000 Subject: Re: Rashes and MSA -hi, thanks,bll for your thoughts on my breathing problem, i also have noticed these spots that is being talked about they seem to come and go and are sometimes itchy, i get my wife to put a aftersun cream on these places, i get them on my back and arms and legss cheers woody-- In shydrager@y..., Message: 15 Date: Thu, 25 Apr 2002 15:47:01 -0400 Subject: Re: Rash and MSA Hi, I just got back from the doctor's office. I was told that my rash is because of my MSA, specifically that my immune system is not functioning correctly. I was advised not to even go in our hot tub (which I just got back into working order day before yesterday) or even a swimming pool because I am likely to have a reaction to the chemicals in it. He said that the MSA is causing a lot of the different major organ systems in my body to not work right. (Reality check from him because of my denial) He is a very kind doctor. He always spends a lot of time with me and answers any questions that I have. He looked truly sad when he told me that he doesn't have any magic answers. He ordered a number of blood tests and increased the dosing on 2 of my meds but is being very cautious with adding any additional medications until after the blood work comes back because he is afraid that I might get an even worse reaction. I don't know why, by now, I haven't figured out when I go to the doctor they are not going to give me some magic pill that will make me well. Because of the botched DBS and the resulting infections that I had earlier this year, they cannot even give me anything to " make me more comfortable. " Taking 1 darvocette for the pain 3 weeks ago necessitated me going back on steroids for a week. I'm glad ya'll are here. I have to admit something to all of you so that I can have the courage to face it myself. I won't be able to have the DBS redone for my MSA. I was scheduled for July 10 (penciled in) but the reality is that the MSA is progressing, I'm not getting over what my body went through from the brain infection in January and if I can't even take a darvocette...I would never live through general anesthesia. Once again, I find myself back to that point of having to accept that this is as good as it is going to get and I'm going to have to deal with it. (Denial is so much more fun than reality)! Deborah aka Tenacity Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
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