Exacerbation?
Question:
new or changed symptoms that persist more than 24hrs jkl
Response:
- Hide quoted text — Show quoted text -Lynne wrote: > That’s one of the connections they are studying in the research group that > Jayne posts about (sorry, Jayne, I can’t remember the name right now.) > Kelli and several family members are participating in that. > The ones they are most interested in are Kelli, who has MS, those in my > family w/Rheumatoid Arthritis, and Roger’s nephew w/juvenile diabetes. > Roger and I haven’t been asked to submit any blood samples yet, and we may > not be asked at all as neither of us has been diagnosed with any of the > diseases they are interested in. > I’m sure Jayne will post the information again if anyone is interested. > (Wish I weren’t so brain-dead this morning.) > – Lynne
I’d be interested in that as well. I posted some info a couple of days ago about HHV-6 … and then faxed it to my doctor and his nurse. Haven’t heard anything yet … Kathie – Hide quoted text — Show quoted text -> Roarke <mr.roa…@ntlworld.com> wrote in message > news:aApg8.85130$Ah1.11632313@news2-win.server.ntlworld.com… > > Interesting article some months ago about suspicions that the same virus > > caused both juvenile onset diabetes and MS. In the first case it acted > > immediately, but with MS it laid dormant for some years then appeared. > Both > > appearances are met with destructive autoimmune responses. My brother has > > juvenile onset diabetes. Enough said. Was a good article.
Response:
I have had MS for a little over a year. How do I know what constitutes an exacerbation and what is just more MS discomfort? In particular, for the past couple of days my left leg and bottom feel hot (even though they aren’t actually) and my ability to feel temperature on that side is affected (the shower felt cool on the left and warm or hot on the right). What’s your experience? Anne
Response:
Hi Anne I had the very same question when I first started out w/ this stuff. The best way I figured it out was, unfortunately, through experience. I was cruising through the relapsing / remitting thing every 4 months for about 18 months. Then I noticed that I wasn’t remitting as much but instead had the constant company of all the little nagging symptoms, none too great, but always there…MS discomfort, as you called it, is a good way to describe that. Then in Oct of last year, I got struck w/ a totally new symptom that greatly affected my walking. It clearly defined a relapse to me because it was *new* and *sudden*, rather than the same old stuff nagging me. In December, vision problems cropped up….new and different from anything else I had experienced….bladder problem…again—new, walking problems, tho not new, suddenly worse… anyway….I guess you get what I am trying to say. Anything new and suddenly different from anything you have experienced before is what I call a relapse. What you are experiencing w/ your leg and the temperature sensitivity, if it is totally a new thing, then I would consider that an exacerbation. Be sure to call your doc….he may not recommend any specific treatment, but the new symptoms do need to be recorded in your records. Good luck…Rhonda On Sat, 02 Mar 2002 21:57:06 -0500, Daniel Kazez – Hide quoted text — Show quoted text -<dka…@mail.wittenberg.edu> wrote: >I have had MS for a little over a year. How do I know what constitutes >an exacerbation and what is just more MS discomfort? In particular, for >the past couple of days my left leg and bottom feel hot (even though >they aren’t actually) and my ability to feel temperature on that side is >affected (the shower felt cool on the left and warm or hot on the >right). >What’s your experience? >Anne
Response:
Anne, Rhonda is correct, the best way to tell if you are having an exacerbation versus temporary worsening of symptoms is whether the symptoms are "new" rather than just worsening of existing symptoms. Do call your neuro ASAP — the sooner you can treatment for an exacerbation and get it stopped, the better chance of not having much additional damage. Are you on any of the ABC drugs (Avonex, Betaseron, Copaxone)? Although the NMSS used to say that they don’t need to be started until you get "worse", last year (I think it was 2001) they came out and said that it is best to get started with one of them right after diagnosis to help prevent the damage. I know that the Copaxone has made a huge difference for me. Good luck, and PLEASE call your doctor. JW I may have MS, but MS definitely does not have me. – Hide quoted text — Show quoted text -Daniel Kazez wrote: > I have had MS for a little over a year. How do I know what constitutes > an exacerbation and what is just more MS discomfort? In particular, for > the past couple of days my left leg and bottom feel hot (even though > they aren’t actually) and my ability to feel temperature on that side is > affected (the shower felt cool on the left and warm or hot on the > right). > What’s your experience? > Anne
Response:
On Sat, 02 Mar 2002 21:28:22 -0700, "J. W. Dillingham" <j…@arielnet.cc> wrote: }Rhonda is correct, the best way to tell if you are having an exacerbation }versus temporary worsening of symptoms is whether the symptoms are "new" }rather than just worsening of existing symptoms.
Usually they want to know if it lasts more than 24 to 48 hours before they consider it an exacerbation. I have lots of burning pains that come and go that I just consider part of the parcel, but when something sets in and shows no signs of leaving I get suspicious. — Joan Watchman = Troll
Response:
I just wanted to add a word abt infections to Rhonda’s very good advice. When I experience a sudden change in my sx, such as increased urinary frequency, my doc has me do a urinalysis to check for treating me for relapse. An infection needs to be treated before you are treated with iv steroids. Jayne
Response:
Big thanks to Rhonda, Jayne, J.W., and Joan for responding so clearly and completely to my message. I was under the impression that it would be bothering my neurologist to call her if I can make it through the discomfort on my own. Okay, Monday I’ll call! So, does everyone automatically treat an exacerbation? I am a Type 1 diabetic, so I’m not thrilled about going on steroids which cause blood sugars to rise dramatically. How ’bout over-the-counter drugs? How do I keep my sanity around my family while I’m so uncomfortable? To answer J.W.’s question, yes… I started on Avonex last May, about 5 months after being diagnosed with MS. I guess this is my first exacerbation. Anne
Response:
Interesting article some months ago about suspicions that the same virus caused both juvenile onset diabetes and MS. In the first case it acted immediately, but with MS it laid dormant for some years then appeared. Both appearances are met with destructive autoimmune responses. My brother has juvenile onset diabetes. Enough said. Was a good article. Roarke <fa.aka…@wittenberg.edu> wrote in message
news:3C821E26.CE3C1005@wittenberg.edu… – Hide quoted text — Show quoted text -> Big thanks to Rhonda, Jayne, J.W., and Joan for responding so clearly and > completely to my message. > I was under the impression that it would be bothering my neurologist to call > her if I can make it through the discomfort on my own. Okay, Monday I’ll > call! > So, does everyone automatically treat an exacerbation? I am a Type 1 > diabetic, so I’m not thrilled about going on steroids which cause blood > sugars to rise dramatically. How ’bout over-the-counter drugs? > How do I keep my sanity around my family while I’m so uncomfortable? > To answer J.W.’s question, yes… I started on Avonex last May, about 5 > months after being diagnosed with MS. I guess this is my first exacerbation. > Anne
Response:
That’s one of the connections they are studying in the research group that Jayne posts about (sorry, Jayne, I can’t remember the name right now.) Kelli and several family members are participating in that. The ones they are most interested in are Kelli, who has MS, those in my family w/Rheumatoid Arthritis, and Roger’s nephew w/juvenile diabetes. Roger and I haven’t been asked to submit any blood samples yet, and we may not be asked at all as neither of us has been diagnosed with any of the diseases they are interested in. I’m sure Jayne will post the information again if anyone is interested. (Wish I weren’t so brain-dead this morning.) – Lynne Roarke <mr.roa…@ntlworld.com> wrote in message
news:aApg8.85130$Ah1.11632313@news2-win.server.ntlworld.com… – Hide quoted text — Show quoted text -> Interesting article some months ago about suspicions that the same virus > caused both juvenile onset diabetes and MS. In the first case it acted > immediately, but with MS it laid dormant for some years then appeared. Both > appearances are met with destructive autoimmune responses. My brother has > juvenile onset diabetes. Enough said. Was a good article. > Roarke > <fa.aka…@wittenberg.edu> wrote in message > news:3C821E26.CE3C1005@wittenberg.edu… > > Big thanks to Rhonda, Jayne, J.W., and Joan for responding so clearly and > > completely to my message. > > I was under the impression that it would be bothering my neurologist to > call > > her if I can make it through the discomfort on my own. Okay, Monday I’ll > > call! > > So, does everyone automatically treat an exacerbation? I am a Type 1 > > diabetic, so I’m not thrilled about going on steroids which cause blood > > sugars to rise dramatically. How ’bout over-the-counter drugs? > > How do I keep my sanity around my family while I’m so uncomfortable? > > To answer J.W.’s question, yes… I started on Avonex last May, about 5 > > months after being diagnosed with MS. I guess this is my first > exacerbation. > > Anne
Response:
chances arent they won’t start steriods now. When I’ve had a flare up, the docs will only start it if i catch it within the first couple of days..or if its a biggie and has seriously affected me. I just had an attack 3 weeks ago..my leg went numb and a bit weak. I called the MS clinic.we talked and they said they wouldn’t start the steriods even if I wanted them (im against steriods). Went to the neuro after the weekend, and he said the same thing. Mine was mostly a sensory attack and he said if it got worse to come back. Well, i just have a little numbness in my feet but everything else is back to normal. Call your neuro on Monday and see what they say. If you don’t feel like this is really affecting you, then steriods may not have to be used. Its still nice to give the neuro a call and tell them whats shakin..that way they can keep track of your attacks. Jen <fa.aka…@wittenberg.edu> wrote in message
news:3C821E26.CE3C1005@wittenberg.edu… – Hide quoted text — Show quoted text -> Big thanks to Rhonda, Jayne, J.W., and Joan for responding so clearly and > completely to my message. > I was under the impression that it would be bothering my neurologist to call > her if I can make it through the discomfort on my own. Okay, Monday I’ll > call! > So, does everyone automatically treat an exacerbation? I am a Type 1 > diabetic, so I’m not thrilled about going on steroids which cause blood > sugars to rise dramatically. How ’bout over-the-counter drugs? > How do I keep my sanity around my family while I’m so uncomfortable? > To answer J.W.’s question, yes… I started on Avonex last May, about 5 > months after being diagnosed with MS. I guess this is my first exacerbation. > Anne
Response:
Hi Anne, I’m so sorry that you have to have MS and Type 1 diabetes. What a cross to carry. I feel like a baby now that I read what you are going through. As far as steroids go my neurologist and nurse both want to put me on them but I told them no way. I will reserve that for something more serious than not being able to play my guitar. My hands are still numb, they may stay numb for all I know but I don’t want steroids. Besides I’m trying to lose weight. <gbg> 
Anyway talk to your neurologist and listen to them not me. Then you can make up your mind of what is right for you. Giving ((((U)))) hugs with my numb hands… Oh BTW, What Rhonda said! Take care Anne, Dan W. — "Life can only be understood… in reverse… But must be lived forwards… I’m losing my senses" – Dave Mustaine Make your fingers like a spider and shred! "Daniel Kazez" <dka…@mail.wittenberg.edu> wrote in message
news:3C819102.2C12D710@mail.wittenberg.edu… – Hide quoted text — Show quoted text -> I have had MS for a little over a year. How do I know what constitutes > an exacerbation and what is just more MS discomfort? In particular, for > the past couple of days my left leg and bottom feel hot (even though > they aren’t actually) and my ability to feel temperature on that side is > affected (the shower felt cool on the left and warm or hot on the > right). > What’s your experience? > Anne
Response:
Thanks Joan, you explained that quiete well. I had often wandered what exacerbation really meant. Dora – Hide quoted text — Show quoted text -Joan Carter wrote: > On Sat, 02 Mar 2002 21:28:22 -0700, "J. W. Dillingham" > <j…@arielnet.cc> wrote: > }Rhonda is correct, the best way to tell if you are having an exacerbation > }versus temporary worsening of symptoms is whether the symptoms are "new" > }rather than just worsening of existing symptoms. > Usually they want to know if it lasts more than 24 to 48 hours before > they consider it an exacerbation. I have lots of burning pains that > come and go that I just consider part of the parcel, but when > something sets in and shows no signs of leaving I get suspicious. > — > Joan > Watchman = Troll
– http://urdangerous.tripod.com When opportunity knocks…don’t miss the dance.
Response:
Big thanks to Jennifer and Dan for their timely and very kind responses. I ended up telephoning my neurologist tonight because I have been so awfully uncomfortable. She was none too pleased to hear from me… said there was nothing she could do while driving her kids around! She suggested that I come in to see her Tuesday morning. I said okay, but I’m wondering now whether I should just tough it out and wait until the appointment I already have scheduled in early April. Please advise! Are steroids the only way to treat exacerbations? Besides the high blood sugars they can cause and the unpleasant weight gain, are there other reasons people avoid them? Does anyone have problems with nausea? Is that MS? I am totally new to newsgroups, so forgive me if I’m asking too many questions and being annoying. Anne – Hide quoted text — Show quoted text –
Response:
Hi Anne, I believe we all have questions and by asking questions you might help someone else who could not express their query. The nausea could be a reaction to some of your medication. Again speak to your neuro. Her job is to help YOU to get better or cope with your issues. Not the other way around! <fa.aka…@wittenberg.edu> wrote in message
news:3C82CCB1.F37D4FD1@wittenberg.edu… – Hide quoted text — Show quoted text -> Big thanks to Jennifer and Dan for their timely and very kind responses. > I ended up telephoning my neurologist tonight because I have been so awfully > uncomfortable. She was none too pleased to hear from me… said there was > nothing she could do while driving her kids around! She suggested that I > come in to see her Tuesday morning. I said okay, but I’m wondering now > whether I should just tough it out and wait until the appointment I already > have scheduled in early April. Please advise! > Are steroids the only way to treat exacerbations? Besides the high blood > sugars they can cause and the unpleasant weight gain, are there other reasons > people avoid them? > Does anyone have problems with nausea? Is that MS? > I am totally new to newsgroups, so forgive me if I’m asking too many > questions and being annoying. > Anne
Response:
steriods can cause bone density loss and can be nasty on your kidneys and liver. For me, I had massive mood swings as well as insane insomnia. The risks outweigh the benefits for me. If the doc offers you steriods..ask what side effects there are. Education is the key..glad to have you around, though sorry your here because of MS JEn <fa.aka…@wittenberg.edu> wrote in message
news:3C82CCB1.F37D4FD1@wittenberg.edu… – Hide quoted text — Show quoted text -> Big thanks to Jennifer and Dan for their timely and very kind responses. > I ended up telephoning my neurologist tonight because I have been so awfully > uncomfortable. She was none too pleased to hear from me… said there was > nothing she could do while driving her kids around! She suggested that I > come in to see her Tuesday morning. I said okay, but I’m wondering now > whether I should just tough it out and wait until the appointment I already > have scheduled in early April. Please advise! > Are steroids the only way to treat exacerbations? Besides the high blood > sugars they can cause and the unpleasant weight gain, are there other reasons > people avoid them? > Does anyone have problems with nausea? Is that MS? > I am totally new to newsgroups, so forgive me if I’m asking too many > questions and being annoying. > Anne
Response:
Hi Anne, I’m so sorry that you have to have MS and Type 1 diabetes. What a cross to carry. I feel like a baby now that I read what you are going through. As far as steroids go my neurologist and nurse both want to put me on them but I told them no way. I will reserve that for something more serious than not being able to play my guitar. My hands are still numb, they may stay numb for all I know but I don’t want steroids. Besides I’m trying to lose weight. <gbg> Anyway talk to your neurologist and listen to them not me. Then you can make up your mind of what is right for you. Giving ((((U)))) hugs with my numb hands… Oh BTW, What Rhonda said! Take care Anne, Dan W. Dan about your hands. The first thing I ever really noticed (ie it took me to the doctor) was numbness in my feet. That was in about May of last year. I have only just recovered the bulk of sensation. Anyway, I wanted you to know to hang in there. It has taken me a long time to get my feet back to normal but it has happened! I am a bit like you. Reseving steroids until absolutely necessary.
Response:
Big thanks to Jennifer and Dan for their timely and very kind responses. I ended up telephoning my neurologist tonight because I have been so awfully uncomfortable. She was none too pleased to hear from me… said there was nothing she could do while driving her kids around! She suggested that I come in to see her Tuesday morning. I said okay, but I’m wondering now whether I should just tough it out and wait until the appointment I already have scheduled in early April. Please advise! Are steroids the only way to treat exacerbations? Besides the high blood sugars they can cause and the unpleasant weight gain, are there other reasons people avoid them? Does anyone have problems with nausea? Is that MS? I am totally new to newsgroups, so forgive me if I’m asking too many questions and being annoying. Anne Anne Do go and see your Neurologist! I had problems with nausea too during an attack. I just kept Maxolons on hand and took them if needed.
Response:
Anne, > come in to see her Tuesday morning. I said okay, but I’m wondering now > whether I should just tough it out and wait until the appointment I already > have scheduled in early April. Please advise!
GO, GO, GO. The idea of stopping an exacerbation is to LIMIT long term damage. And you want to STOP it as fast as possible. So please do go on Tuesday morning (tomorrow). > Are steroids the only way to treat exacerbations? Besides the high blood > sugars they can cause and the unpleasant weight gain, are there other reasons > people avoid them?
There are a lot of different side effects, some long term and some short term. And, yes, I have heard that there are other ways than steroids to stop a major exacerbation — but since I have never used them I can’t give you any advice here. > Does anyone have problems with nausea? Is that MS?
Nausea can definitely be caused by MS, but it can also be caused by a LOT of other things. The most common cause of nausea is middle ear infection. Another thing to talk to your neuro about tomorrow. I’ve had nausea for years since the MS damaged my "balance processing center" in my brain, but I understand that that is fairly rare. There are drugs you can take to handle this if it turns into a long term problem. By the way, some people, including me, have nausea as a side effect from certain drugs. > I am totally new to newsgroups, so forgive me if I’m asking too many > questions and being annoying.
That is what we are here for, to help each other, so ask away. JW I may have MS, but MS definitely does not have me.
Response:
On Sun, 03 Mar 2002 07:59:19 -0500, fa.aka…@wittenberg.edu wrote: >I was under the impression that it would be bothering my neurologist to call >her if I can make it through the discomfort on my own. Okay, Monday I’ll >call!
One should never feel they are a nuisance to their physician. It is what we pay them for, after all, to *care* for our health. The best way for any doctor to treat any illness is for the patient to be forthright about symptoms. >So, does everyone automatically treat an exacerbation? I am a Type 1 >diabetic, so I’m not thrilled about going on steroids which cause blood >sugars to rise dramatically. How ’bout over-the-counter drugs?
I don’t think all exacerbations have to be treated. I recently chose the steroids treatment because everything, all at once, seemed out-of-control and I was feeling a bit desperate. Just treating the symptoms w/ rx meds wasn’t working…so I chose the "bomb". The doctor may choose to do nothing except make a notation in your chart. That, in and of itself, is important stuff. Down the road, you could face disability issues w/ insurance and/or gov’t aid facilities. It would be in your best interest to have had documentation. Certainly over-the-counter medications have their place. If pain is not too severe, Motrin is helpful. There have been times that I have taken Benadryl to relax me and help me w/ the business of getting rested. Certainly, tho, any OTC medication you take, because of your diabetes, would have to be carefully considered. ( I am sure you knew that, tho, already <g> ) >How do I keep my sanity around my family while I’m so uncomfortable?
Be honest w/ them….tell them you are not feeling well and explain to them *how* you are not feeling well. My husband always sees it but to my children I just say " Mommy is having a bad day"….or " this is a no-driving-day today" and they get it. Suddenly they become much more resilient in their own pursuits ) Good luck, Anne….this is a difficult time for you and your family. Best to learn some patience for yourself and teach the others the fine art of tolerance Rhonda
Response:
nope…go in….have yourself looked over. The doc may do absolutely nothing but go "hmm" and " I see" but the visit will be documented, you will have further established your relationship as patient/doctor, and there may actually be something in the way of treatment that could help you manage the symptoms. Not necessarily steroids, but something else. Steroid treatment is quite different for each person. The steroids have sent some people on the group into la-la land…others into hyper-zones…and still others ( like me ) into sleepy-mode. Unfortunately, the only way to know how you will react is to try them and , unfortunately again, if you react poorly, it is too late….the drug in is your system. In your case, it would probably require hospitalization to monitor your blood sugar levels, least that is the procedure at my MS office. And asking questions is never annoying…you are trying to learn, and by asking questions, we all benefit:) Rhonda – Hide quoted text — Show quoted text -On Sun, 03 Mar 2002 20:24:02 -0500, fa.aka…@wittenberg.edu wrote: >Big thanks to Jennifer and Dan for their timely and very kind responses. >I ended up telephoning my neurologist tonight because I have been so awfully >uncomfortable. She was none too pleased to hear from me… said there was >nothing she could do while driving her kids around! She suggested that I >come in to see her Tuesday morning. I said okay, but I’m wondering now >whether I should just tough it out and wait until the appointment I already >have scheduled in early April. Please advise! >Are steroids the only way to treat exacerbations? Besides the high blood >sugars they can cause and the unpleasant weight gain, are there other reasons >people avoid them? >Does anyone have problems with nausea? Is that MS? >I am totally new to newsgroups, so forgive me if I’m asking too many >questions and being annoying. >Anne
Response:
<fa.aka…@wittenberg.edu> wrote in message
news:3C821E26.CE3C1005@wittenberg.edu… – Hide quoted text — Show quoted text -> Big thanks to Rhonda, Jayne, J.W., and Joan for responding so clearly and > completely to my message. > I was under the impression that it would be bothering my neurologist to call > her if I can make it through the discomfort on my own. Okay, Monday I’ll > call! > So, does everyone automatically treat an exacerbation? I am a Type 1 > diabetic, so I’m not thrilled about going on steroids which cause blood > sugars to rise dramatically. How ’bout over-the-counter drugs? > How do I keep my sanity around my family while I’m so uncomfortable? > To answer J.W.’s question, yes… I started on Avonex last May, about 5 > months after being diagnosed with MS. I guess this is my first exacerbation. > Anne
Try what I do – do nothing because you have no medical care. And deal with pain quietly – again – because you don’t have any other choice. Life with M.S. is a joy. Kathy K. – Hide quoted text — Show quoted text –
Response:
Hi group, Lucky me, I have been on Avonex for 5 months (yes, I am still count ‘em – 20 injections so far – left leg this week). I find that I am still having new symptoms on a weekly basis. For the last month I have had loss of feeling in the left arm, first on the top of the bicep, moving down to the inside of the forearm, and ending on the tip of the left thumb. It is not numb, just doesn’t feel normal (I feel heat, pressure, sharp, dull – but at times, I just want to scream if anything touches the areas!). The feeling just has not gone away for 30+ days, and the Neurontin I am taking doesn’t touch this strange feeling. I have learned to deal with the transient sensations; burning on the face, feeling of pressure simultaneously on the ears (like someone has grabbed my head at the ears with an ice tongs), or general tingling to enumerate on a few. Is this numbness in my arm an exacerbation that should be treated by steroids or other means, or is this just one of the benefits of MS? Should I just keep quiet and deal with it, because loss of sensation is minor side effect of the disease? (It could be a lot worse). I have read that the Avonex will reduce the number of exacerbations after a period of time…. The PID graph shows after six months the people taking the medication have fewer exacerbations than those not taking the medication. I am still taking the medication, but deep in my heart, I believe it is causing me more problems than it is helping to reduce. All of these weird sensations listed above and more were not experienced prior to beginning Avonex. Perhaps they would have shown up, or perhaps not. Who really knows? I’ll keep administering it…. at least for now…. Has anyone any recommendations for neurologists specializing in MS in the Washington, DC area? I am looking for a change because I am not certain my current doctor is everything I want in a neurologist (his specialty is optics, not MS). and it might be to my benefit to look further. Thanks group. I may not post very often, but I read most posts and learn daily. Debby "Dan Weed" <sh…@comcast.netNS> wrote in message
news:aVtg8.34745$Dh.3558354@bin2.nnrp.aus1.giganews.com… – Hide quoted text — Show quoted text -> Hi Anne, > I’m so sorry that you have to have MS and Type 1 diabetes. > What a cross to carry. I feel like a baby now that I read what > you are going through. As far as steroids go my neurologist and > nurse both want to put me on them but I told them no way. I will > reserve that for something more serious than not being able to play > my guitar. My hands are still numb, they may stay numb for all I know > but I don’t want steroids. Besides I’m trying to lose weight. <gbg> > Anyway talk to your neurologist and listen to them not me. > Then you can make up your mind of what is right for you. > Giving ((((U)))) hugs with my numb hands… > Oh BTW, What Rhonda said! > Take care Anne, > Dan W. > — > "Life can only be understood… in reverse… > But must be lived forwards… > I’m losing my senses" – Dave Mustaine > Make your fingers like a spider and shred! > "Daniel Kazez" <dka…@mail.wittenberg.edu> wrote in message > news:3C819102.2C12D710@mail.wittenberg.edu… > > I have had MS for a little over a year. How do I know what constitutes > > an exacerbation and what is just more MS discomfort? In particular, for > > the past couple of days my left leg and bottom feel hot (even though > > they aren’t actually) and my ability to feel temperature on that side is > > affected (the shower felt cool on the left and warm or hot on the > > right). > > What’s your experience? > > Anne
Response:
On Fri, 17 May 1996 00:16:05 GMT, "McQ’S" <mcqu…@LUMINET.NET> wrote: >of their P.T. I just started P.T. last week and WOW what a difference. It
Just what is meant by P.T. please? (my English may be poor ) forgive me.) Thanks
Response:
At 05:36 PM 5/21/96 GMT, Edward Aloskofis wrote: >Just what is meant by P.T. please? (my English may be poor ) >forgive me.) >Thanks
Physical therapist. Gary
Response:
At 10:38 AM 5/20/96 -0700, you wrote: >Hi Cheryl, >I called my nuero and he did return my call. I told him my symptoms and >he said that it did sound like I was having an exacerbation snip >doing. I am going to do the Avonex. I did tell him to document it in my >records so that when I do apply for SSDI it would help me out. >Dolores
Dolores, I think I am going to break down and call mine too. I want to check out Avonex as well but I need to let him know what is happening with me. I just hate wasting my time and his when I know that there is nothing he can do for me. I also do not want to take the steroids unless it is really necessary. You will probably start the Avonex befroe I will. I need to get a referal to my neuro from my Primary Care doc, he then needs to prescribe the Avonex, then my PC doc needs to get approval from my insurrance company. And of course their doctors will know best whether I am a candidate for this drug as they have never seen me but have access to all the medical records that are truely necessary to make such a decision (sarcasm). So I may have a long wait. You’ll have to let us know how it goes for you. Take care and I will be hoping this exacerbation passes quickly for both of us. CL Spuhler _________________________ | ~ ^ ^ | Cheryl and Dana Spuhler | ~ ()() /( | spuh…@bright.net | ~ / / | / ( | Beware of Dragons | ~00/ | |___/ ( | | ^^ | ( | |____________________(___|
Response:
Gary L. Stone (gst…@GENESEE.FREENET.ORG) wrote: : At 05:36 PM 5/21/96 GMT, Edward Aloskofis wrote: : >Just what is meant by P.T. please? (my English may be poor ) : >forgive me.) : >Thanks : Physical therapist. Or if you are going to one its Pain and Torture 
Bill in New Mexico
Response:
Hi Cheryl, I called my nuero and he did return my call. I told him my symptoms and he said that it did sound like I was having an exacerbation and there was nothing we could do except try steroids. I told him I did not want to try them because I am overweight already and do not want to put on extra pounds. He told me to rest and hope that it would go away soon. I told him about Avonex being approved and he did not know anything about it, yet. He did tell me to call him in a week and let him know how I am doing. I am going to do the Avonex. I did tell him to document it in my records so that when I do apply for SSDI it would help me out. Dolores On Fri, 17 May 1996, Dana & Cheryl Spuhler wrote: – Hide quoted text — Show quoted text -> At 04:16 PM 5/16/96 -0700, you wrote: > >Hi all, > >I am not sure, but I think I am having an exacerbation. > snip > >cane. What do I do? I have not experienced any change in my symptoms > >for 2 years and 5 months. > snip > Dolores, > I understand what you are going through. I am having trouble with my arms > right now that I believe may be another exacerbation, but it is not so bad > that I want to waste my time going to the neuro and here him offer me steroids > that I won’t take until I am worse anyway. I am never sure if I should go or > not when I know that there is nothing more they can do for me. I have assumed > lately that a phone call to keep him updated is enough. If I thought he could > do more for me I would go see him but until Avonex is released there is’t > anything else I can get from him yet. I also use a cane but may need to move > to a scooter or electric chair if my arms continue to worsen. If you have > used steroids before with good results or think they might help now, a trip to > the neuro is in line. I hope it eases up for you soon. It is not a fun way to > move into summer. Take care and let us know how you are. > CL Spuhler > _________________________ > | ~ ^ ^ | > Cheryl and Dana Spuhler | ~ ()() /( | > spuh…@bright.net | ~ / / | / ( | > Beware of Dragons | ~00/ | |___/ ( | > | ^^ | ( | > |____________________(___|
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Hi Mimi, I am currently in P.T. to try to compensate for a foot drop (R). My P.T. wants to try regaining the strength before I get fitted for a leg brace. I’d appreciate hearing your idea if you would share. Especially if it’s something I could use short term until I get the muscles built back up. Thank you. Tare At 03:41 PM 5/17/96 -0400, you wrote: – Hide quoted text — Show quoted text ->On Fri, 17 May 1996, Mimi Heyman wrote: >> Yesterday, when I saw my neurolgist, he noticed that I was still using >> my "invention" instead of an AFO. He said it might actually be better >> than the leg brace…and said that I should patent the idea. I told him >> that I will happily donate the idea to anyone who has M S and a "dropped >> foot". >> I bought a heavy duty theraband from a P T office (color blue thanks >> to David Reiss’s suggestion about different weights of therabands) and >Mimi, > Thanks for the plug. I am glad that your invention is working out so >well for you. I have always believed that we are are a very resourceful >group ans I am always on the lookout for posts which describe simple >solutions to common problems. Thanks for sharing this one. >David Reiss
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HI, Sounds like, went through similar 4 yr ago. Redoulbed exercizes, (felt better mentally) but did not fix prob. CHAULKED IT UP TO NEVER-EVER LAND BILL
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At 04:16 PM 5/16/96 -0700, you wrote: >Hi all, >I am not sure, but I think I am having an exacerbation. snip >cane. What do I do? I have not experienced any change in my symptoms >for 2 years and 5 months.
snip Dolores, I understand what you are going through. I am having trouble with my arms right now that I believe may be another exacerbation, but it is not so bad that I want to waste my time going to the neuro and here him offer me steroids that I won’t take until I am worse anyway. I am never sure if I should go or not when I know that there is nothing more they can do for me. I have assumed lately that a phone call to keep him updated is enough. If I thought he could do more for me I would go see him but until Avonex is released there is’t anything else I can get from him yet. I also use a cane but may need to move to a scooter or electric chair if my arms continue to worsen. If you have used steroids before with good results or think they might help now, a trip to the neuro is in line. I hope it eases up for you soon. It is not a fun way to move into summer. Take care and let us know how you are. CL Spuhler _________________________ | ~ ^ ^ | Cheryl and Dana Spuhler | ~ ()() /( | spuh…@bright.net | ~ / / | / ( | Beware of Dragons | ~00/ | |___/ ( | | ^^ | ( | |____________________(___|
Response:
On Thu, 16 May 1996, dolores carmona wrote: > I am not sure, but I think I am having an exacerbation. For the past two > weeks my weak leg, is getting weaker. It is really dragging. It is hard > to lift up when I walk. I also notice my balance is off a little more > than usual. Is this the time I go see my neuro so he can log my symptoms > in my records? I do not have any tingling or numbness. I do walk with a > cane. What do I do? I have not experienced any change in my symptoms > for 2 years and 5 months.
Dolores, IMHO, this _is_ the time for you to call your neuro and ask to be seen as soon as possible. You do want to keep your doctor informed of possible progression and there may be some action whihc will limit the exarcerbation if there is one. Other possibilities such which may affect your symtoms should also be ruled out. Are you running a mild fever? Is the weather affecting you? For the first few years after diagnosis I was nowhere as sensitive to heat as I am now. David Reiss
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> I am not sure, but I think I am having an exacerbation. For the past two > weeks my weak leg, is getting weaker. It is really dragging. It is hard
Yesterday, when I saw my neurolgist, he noticed that I was still using my "invention" instead of an AFO. He said it might actually be better than the leg brace…and said that I should patent the idea. I told him that I will happily donate the idea to anyone who has M S and a "dropped foot". I bought a heavy duty theraband from a P T office (color blue thanks to David Reiss’s suggestion about different weights of therabands) and I cut it and tied it so that when it’s hooked on the handle of my walker, it brings my foot up to the desired height. It snaps my foot up so that it doesn’t drag and impede my ability to walk. Of course one must have a walker to attach it to. There are days when I simply could not ambulate without it. In effect, it’s like a large rubberband. Mimi
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On Fri, 17 May 1996, Mimi Heyman wrote: > Yesterday, when I saw my neurolgist, he noticed that I was still using > my "invention" instead of an AFO. He said it might actually be better > than the leg brace…and said that I should patent the idea. I told him > that I will happily donate the idea to anyone who has M S and a "dropped > foot". > I bought a heavy duty theraband from a P T office (color blue thanks > to David Reiss’s suggestion about different weights of therabands) and
Mimi, Thanks for the plug. I am glad that your invention is working out so well for you. I have always believed that we are are a very resourceful group ans I am always on the lookout for posts which describe simple solutions to common problems. Thanks for sharing this one. David Reiss
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Hi Mimi, I think I am going to try it! Anything is better than one side laging behind when I walk. I put a call in to the nuero today and hope he gets back to me soon. Thanks Dolores hfoao…@csun.edu – Hide quoted text — Show quoted text -On Fri, 17 May 1996, Mimi Heyman wrote: > > I am not sure, but I think I am having an exacerbation. For the past two > > weeks my weak leg, is getting weaker. It is really dragging. It is hard > Yesterday, when I saw my neurolgist, he noticed that I was still using > my "invention" instead of an AFO. He said it might actually be better > than the leg brace…and said that I should patent the idea. I told him > that I will happily donate the idea to anyone who has M S and a "dropped > foot". > I bought a heavy duty theraband from a P T office (color blue thanks > to David Reiss’s suggestion about different weights of therabands) and > I cut it and tied it so that when it’s hooked on the handle of my walker, > it brings my foot up to the desired height. It snaps my foot up so that > it doesn’t drag and impede my ability to walk. Of course one must have > a walker to attach it to. There are days when I simply could not ambulate > without it. In effect, it’s like a large rubberband. > Mimi
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Hi all, I am not sure, but I think I am having an exacerbation. For the past two weeks my weak leg, is getting weaker. It is really dragging. It is hard to lift up when I walk. I also notice my balance is off a little more than usual. Is this the time I go see my neuro so he can log my symptoms in my records? I do not have any tingling or numbness. I do walk with a cane. What do I do? I have not experienced any change in my symptoms for 2 years and 5 months. Thanks in advance! Dolores hfoao…@csun.edu
Response:
Reply to message from hfoao…@DEWEY.CSUN.EDU of Thu, 16 May – Hide quoted text — Show quoted text ->Hi all, >I am not sure, but I think I am having an exacerbation. For the past two >weeks my weak leg, is getting weaker. It is really dragging. It is hard >to lift up when I walk. I also notice my balance is off a little more >than usual. Is this the time I go see my neuro so he can log my symptoms >in my records? I do not have any tingling or numbness. I do walk with a >cane. What do I do? I have not experienced any change in my symptoms >for 2 years and 5 months. >Thanks in advance! >Dolores hfoao…@csun.edu
Hi Dolores! I would suggest that you call your doctor – neurologist, if you have one! I tend to wait a couple weeks before I call my doctor. This time, I called immediately. Since I wasn’t able to the doctor, it was decided to see if it gets worse. Well, it isn’t getting worse, so I’ll ride it out. At least I know what the doctor can suggest. None of us can see you, and most are not doctors. Call tomorrow! It will put your mind at ease! Love ‘n hugs, Jill — A smile is a light on your face that lets people know your heart is home. - Author unknown –
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Dolores, Yes, if the symptoms have lasted for 2 weeks I would say you should call your neuro. The change could be caused by the change in weather (is it getting hot where you are) or it could be caused by something else. Just to let your neuro know what is going on is a good idea. And if it should be an exacerbation, then you would need to talk to him/her about alternative treatments to get it stopped. Cyberhugs and cyberlicks, JW and Ginger email jdill…@abwam.com I may have MS, but MS definitely does not have me. – Hide quoted text — Show quoted text ->Hi all, >I am not sure, but I think I am having an exacerbation. For the past two >weeks my weak leg, is getting weaker. It is really dragging. It is hard >to lift up when I walk. I also notice my balance is off a little more >than usual. Is this the time I go see my neuro so he can log my symptoms >in my records? I do not have any tingling or numbness. I do walk with a >cane. What do I do? I have not experienced any change in my symptoms >for 2 years and 5 months. >Thanks in advance! >Dolores hfoao…@csun.edu
Response:
Hi Dolores,’ What you’re explaining could very well be an ex. or maybe not. There are a lot of things to consider. (Just the very nature of MS who ever knows for sure whats going on?) I would check with your neuorologist but I would also question if you have a physical therapist? I’ve for about a year and a half been experiencing symptoms similar to what you are. Then I asked about a P.T. No one in the medical field had ever suggested it to me. It seemes that so many people spoke so well of what they’d accomplished with the help of their P.T. I just started P.T. last week and WOW what a difference. It only makes sense I was using those muscles less and less. It get’s frustrating trying to know when to call the Dr., Neuro, P.T. I guess it’s important to find one that you believe in. Also watching & learning from this support group is a helpful. I wish you good luck in finding someone who can help you with this. Tare At 04:16 PM 5/16/96 -0700, you wrote: – Hide quoted text — Show quoted text ->Hi all, >I am not sure, but I think I am having an exacerbation. For the past two >weeks my weak leg, is getting weaker. It is really dragging. It is hard >to lift up when I walk. I also notice my balance is off a little more >than usual. Is this the time I go see my neuro so he can log my symptoms >in my records? I do not have any tingling or numbness. I do walk with a >cane. What do I do? I have not experienced any change in my symptoms >for 2 years and 5 months. >Thanks in advance! >Dolores hfoao…@csun.edu
