Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Hi Robin, what meds are you taking? They may or may not be adding to your fatigue. -NYRobin Harwood wrote: hi, everyone. My MS was discovered by accident threeyears ago when I had an MRI done for another purpose. In the past 3 years my symptoms have been minimal, butjust recently have become significantly worse. I havean appointment with a neurologist tomorrow.In the meantime, I find my symptoms rather scary.I feel somewhat dizzy--sort of like I don't know quitewhere my arms and hands are in space--sort of drunk. I am still functional, it is just the sensation.My legs feel very weak. This morning, I had to walkto the plaza (maybe a 7-10 minute walk), push agrocery cart around the store (with a 4 year oldhanging off of it), load the groceries into myhandcart, and pull the cart (walking) back home. Icame home exhausted. I am ambulatory, but it isexhausting.I have a lot of sore muscles in my legs and lowerback.I think this has all come on very gradually over theyears--probably since 1991 or 1992. This is the firsttime that I think I have something resembling an acuteepisode, and perhaps if the MS had not been discoveredby accident 3 years ago, maybe it would be diagnosednow.I wish I had a better sense whether I will recoverfrom this or get gradually worse, and if so, how rapidthe progression will be. I don't have a car here inGermany and so must do a lot of walking--somethingthat seems to have made my symptoms worse. Yesterday,we spent the day at home and I felt stronger--all gonetoday after the grocery shopping.I am the single parent of a 4 year old. I worry abouthow I will care for her.Robin__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 I am not currently on any meds for MS. I was on amantadine for a while for fatigue, but I stopped because it was interfering with my sleep at night. I take trazodone for sleep at night, thyroid meds, and hormone replacement. That's it--except for vitamins. Robin --- ifewith wrote: > Hi Robin, what meds are you taking? They may or may > not be adding to your fatigue. -NY > > Robin Harwood wrote: hi, > everyone. My MS was discovered by accident three > years ago when I had an MRI done for another > purpose. > In the past 3 years my symptoms have been minimal, > but > just recently have become significantly worse. I > have > an appointment with a neurologist tomorrow. > > In the meantime, I find my symptoms rather scary. > > I feel somewhat dizzy--sort of like I don't know > quite > where my arms and hands are in space--sort of drunk. > > I am still functional, it is just the sensation. > > My legs feel very weak. This morning, I had to walk > to the plaza (maybe a 7-10 minute walk), push a > grocery cart around the store (with a 4 year old > hanging off of it), load the groceries into my > handcart, and pull the cart (walking) back home. I > came home exhausted. I am ambulatory, but it is > exhausting. > > I have a lot of sore muscles in my legs and lower > back. > > I think this has all come on very gradually over the > years--probably since 1991 or 1992. This is the > first > time that I think I have something resembling an > acute > episode, and perhaps if the MS had not been > discovered > by accident 3 years ago, maybe it would be diagnosed > now. > > I wish I had a better sense whether I will recover > from this or get gradually worse, and if so, how > rapid > the progression will be. I don't have a car here in > Germany and so must do a lot of walking--something > that seems to have made my symptoms worse. > Yesterday, > we spent the day at home and I felt stronger--all > gone > today after the grocery shopping. > > I am the single parent of a 4 year old. I worry > about > how I will care for her. > > Robin > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Hi Robin, I take Copaxone, Amantadine, Neurontin, Ditropan, St. 's wort, and Synthroid for my thyroid. Also Vitamins. You're lucky, take one day at a time and pace yourself. That's what they tell me, -NYRobin Harwood wrote: I am not currently on any meds for MS. I was onamantadine for a while for fatigue, but I stoppedbecause it was interfering with my sleep at night. Itake trazodone for sleep at night, thyroid meds, andhormone replacement. That's it--except for vitamins.Robin--- ifewith wrote:> Hi Robin, what meds are you taking? They may or may> not be adding to your fatigue. -NY> > Robin Harwood wrote: hi,> everyone. My MS was discovered by accident three> years ago when I had an MRI done for another> purpose. > In the past 3 years my symptoms have been minimal,> but> just recently have become significantly worse. I> have> an appointment with a neurologist tomorrow.> > In the meantime, I find my symptoms rather scary.> > I feel somewhat dizzy--sort of like I don't know> quite> where my arms and hands are in space--sort of drunk.> > I am still functional, it is just the sensation.> > My legs feel very weak. This morning, I had to walk> to the plaza (maybe a 7-10 minute walk), push a> grocery cart around the store (with a 4 year old> hanging off of it), load the groceries into my> handcart, and pull the cart (walking) back home. I> came home exhausted. I am ambulatory, but it is> exhausting.> > I have a lot of sore muscles in my legs and lower> back.> > I think this has all come on very gradually over the> years--probably since 1991 or 1992. This is the> first> time that I think I have something resembling an> acute> episode, and perhaps if the MS had not been> discovered> by accident 3 years ago, maybe it would be diagnosed> now.> > I wish I had a better sense whether I will recover> from this or get gradually worse, and if so, how> rapid> the progression will be. I don't have a car here in> Germany and so must do a lot of walking--something> that seems to have made my symptoms worse. > Yesterday,> we spent the day at home and I felt stronger--all> gone> today after the grocery shopping.> > I am the single parent of a 4 year old. I worry> about> how I will care for her.> > Robin> > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 well, I am not on any meds because I have not received any medical treatment, not because it might not have been useful for me to receive them. Robin --- ifewith wrote: > Hi Robin, I take Copaxone, Amantadine, Neurontin, > Ditropan, St. 's wort, and Synthroid for my > thyroid. Also Vitamins. You're lucky, take one day > at a time and pace yourself. That's what they tell > me, -NY > > Robin Harwood wrote: I > am not currently on any meds for MS. I was on > amantadine for a while for fatigue, but I stopped > because it was interfering with my sleep at night. > I > take trazodone for sleep at night, thyroid meds, and > hormone replacement. That's it--except for > vitamins. > > Robin __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 I hope that you get medical treatment SOON! Sure sounds like Ms to me! Get an MRI or two, spinal tap to check for oligoclonal bands in the spine, and even ask for evoked potentials, especially in the brain stem. Nothing pushy about me, love, n Re: symptoms well, I am not on any meds because I have not receivedany medical treatment, not because it might not havebeen useful for me to receive them. Robin--- ifewith wrote:> Hi Robin, I take Copaxone, Amantadine, Neurontin,> Ditropan, St. 's wort, and Synthroid for my> thyroid. Also Vitamins. You're lucky, take one day> at a time and pace yourself. That's what they tell> me, -NY> > Robin Harwood wrote: I> am not currently on any meds for MS. I was on> amantadine for a while for fatigue, but I stopped> because it was interfering with my sleep at night. > I> take trazodone for sleep at night, thyroid meds, and> hormone replacement. That's it--except for> vitamins.> > Robin__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 thanks! I am glad to know there are others who experience these symptoms! Robin --- n Rojas wrote: > I hope that you get medical treatment SOON! Sure > sounds like Ms to me! > Get an MRI or two, spinal tap to check for > oligoclonal bands in the spine, > and even ask for evoked potentials, especially in > the brain stem. Nothing > pushy about me, love, n > Re: symptoms > > > well, I am not on any meds because I have not > received > any medical treatment, not because it might not > have > been useful for me to receive them. > > Robin > > --- ifewith wrote: > > > Hi Robin, I take Copaxone, Amantadine, > Neurontin, > > Ditropan, St. 's wort, and Synthroid for my > > thyroid. Also Vitamins. You're lucky, take one > day > > at a time and pace yourself. That's what they > tell > > me, -NY > > > > Robin Harwood wrote: > I > > am not currently on any meds for MS. I was on > > amantadine for a while for fatigue, but I > stopped > > because it was interfering with my sleep at > night. > > I > > take trazodone for sleep at night, thyroid meds, > and > > hormone replacement. That's it--except for > > vitamins. > > > > Robin > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Hi Robin ~ I'm really glad to hear you have your appt. already. It must be very hard on you to be in a foreign country & have to depend on others to help. I know exactly what you mean about walking becoming exhausting. I get cramps in my legs & hips & lower back as well - and I absolutely HATE steps...I also have that nerve-burn pain all across the tops of my shoulders - even when I'm just sitting here - but give me something to carry & it's 10 times worse. From our parking lot to the apartment feels like a mile when I have groceries. I know you're unsure of how you will manage with your 4 year old, but I think with the proper medication you'll be ok - but it might be good to have someone to watch her on days that you don't feel so hot - maybe a neighbor you trust, or something, because I know there may be those kinds of days, and it IS hard with a little one. I really wish good things for you - it breaks my heart that you're having such a rough time...but seeing the doctor is #1 - and then maybe finding a way to rest & not have to worry about your little one - at least for a few hours may help, also. I send you my best kharma and I'll pray for you that things look up. Sorry I blabbed on forever, I just feel your pain, and wish it would go away for you. Good luck & God bless you & your daughter. debbie>> hi, everyone. My MS was discovered by accident three> years ago when I had an MRI done for another purpose. > In the past 3 years my symptoms have been minimal, but> just recently have become significantly worse. I have> an appointment with a neurologist tomorrow.> > In the meantime, I find my symptoms rather scary.> > I feel somewhat dizzy--sort of like I don't know quite> where my arms and hands are in space--sort of drunk. > I am still functional, it is just the sensation.> > My legs feel very weak. This morning, I had to walk> to the plaza (maybe a 7-10 minute walk), push a> grocery cart around the store (with a 4 year old> hanging off of it), load the groceries into my> handcart, and pull the cart (walking) back home. I> came home exhausted. I am ambulatory, but it is> exhausting.> > I have a lot of sore muscles in my legs and lower> back.> > I think this has all come on very gradually over the> years--probably since 1991 or 1992. This is the first> time that I think I have something resembling an acute> episode, and perhaps if the MS had not been discovered> by accident 3 years ago, maybe it would be diagnosed> now.> > I wish I had a better sense whether I will recover> from this or get gradually worse, and if so, how rapid> the progression will be. I don't have a car here in> Germany and so must do a lot of walking--something> that seems to have made my symptoms worse. Yesterday,> we spent the day at home and I felt stronger--all gone> today after the grocery shopping.> > I am the single parent of a 4 year old. I worry about> how I will care for her.> > Robin> > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2006 Report Share Posted April 4, 2006 thanks for your kind words, Deborah! I had my appt yesterday but don't know how helpful it was. The fax of my medical records had not arrived yet so the doctor had basically no info from previous MRIs. He did a very brief neurological exam and said that everything was in the normal range. He suggested that the trazodone I take at night for sleep might contribute to fatigue but didn't want to make any med changes. In fact, he did not want to do anything but see me back in several weeks after he's received the fax from the states. So, I felt as though I had wasted my own time and the time of the friend who drove me there. Robin --- Deborah wrote: > Hi Robin ~ I'm really glad to hear you have your > appt. already. It > must be very hard on you to be in a foreign country > & have to depend on > others to help. I know exactly what you mean about > walking becoming > exhausting. I get cramps in my legs & hips & lower > back as well - and I > absolutely HATE steps...I also have that nerve-burn > pain all across the > tops of my shoulders - even when I'm just sitting > here - but give me > something to carry & it's 10 times worse. From our > parking lot to the > apartment feels like a mile when I have groceries. > I know you're unsure > of how you will manage with your 4 year old, but I > think with the proper > medication you'll be ok - but it might be good to > have someone to watch > her on days that you don't feel so hot - maybe a > neighbor you trust, or > something, because I know there may be those kinds > of days, and it IS > hard with a little one. I really wish good things > for you - it breaks > my heart that you're having such a rough time...but > seeing the doctor is > #1 - and then maybe finding a way to rest & not have > to worry about your > little one - at least for a few hours may help, > also. I send you my > best kharma and I'll pray for you that things look > up. Sorry I blabbed > on forever, I just feel your pain, and wish it would > go away for you. > Good luck & God bless you & your daughter. debbie > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2006 Report Share Posted April 5, 2006 Robin, That is so frustrating! My goodness. What was holding up the fax, I wonder? I do agree with the doctor on one point though. I used to take Trazodone also. I hated the stuff. With the MS, I was already fatigued enough. That stuff just turned me into a zombie. It's one thing to not be able to sleep at night, but to not be able to function during the day, is unbearable for me. Now, even though I have problems sleeping at night, I take an over the counter sleepaid. Usually about 100mgs. and drink a cup of hot camomile tea before retiring. Doesn't always work, but most of the Time it's better than not doing anything at all. I have always wondered why it takes a neurologist so long to see their patients. I called 2 Days ago to make an appt. They set it for May 10th. Don't do like I did,though. As frustrating as this may be, you still need to keep your appts. I know it seems like a waste of time. Oh boy, do I. But, this is important. It's your life. I'll close for now. Have a blessed day.... -- Re: Re: symptoms thanks for your kind words, Deborah! I had my apptyesterday but don't know how helpful it was. The faxof my medical records had not arrived yet so thedoctor had basically no info from previous MRIs. Hedid a very brief neurological exam and said thateverything was in the normal range. He suggested thatthe trazodone I take at night for sleep mightcontribute to fatigue but didn't want to make any medchanges. In fact, he did not want to do anything butsee me back in several weeks after he's received thefax from the states. So, I felt as though I hadwasted my own time and the time of the friend whodrove me there.Robin--- Deborah wrote:> Hi Robin ~ I'm really glad to hear you have your> appt. already. It> must be very hard on you to be in a foreign country> & have to depend on> others to help. I know exactly what you mean about> walking becoming> exhausting. I get cramps in my legs & hips & lower> back as well - and I> absolutely HATE steps...I also have that nerve-burn> pain all across the> tops of my shoulders - even when I'm just sitting> here - but give me> something to carry & it's 10 times worse. From our> parking lot to the> apartment feels like a mile when I have groceries. > I know you're unsure> of how you will manage with your 4 year old, but I> think with the proper> medication you'll be ok - but it might be good to> have someone to watch> her on days that you don't feel so hot - maybe a> neighbor you trust, or> something, because I know there may be those kinds> of days, and it IS> hard with a little one. I really wish good things> for you - it breaks> my heart that you're having such a rough time...but> seeing the doctor is> #1 - and then maybe finding a way to rest & not have> to worry about your> little one - at least for a few hours may help,> also. I send you my> best kharma and I'll pray for you that things look> up. Sorry I blabbed> on forever, I just feel your pain, and wish it would> go away for you. > Good luck & God bless you & your daughter. debbie> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2006 Report Share Posted April 5, 2006 that is interesting! I think I will stop the trazodone. I didn't take it last night. I did have trouble sleeping, but I feel less 'drugged' today. maybe I should look into chamomile tea as well! RObin --- Valene wrote: > Robin, > That is so frustrating! My goodness. What was > holding up the fax, I > wonder? I do agree with the doctor on one point > though. I used to take > Trazodone also. I hated the stuff. With the MS, I > was already fatigued > enough. That stuff just turned me into a zombie. > It's one thing to not be > able to sleep at night, but to not be able to > function during the day, is > unbearable for me. Now, even though I have problems > sleeping at night, I > take an over the counter sleepaid. Usually about > 100mgs. and drink a cup of > hot camomile tea before retiring. Doesn't always > work, but most of the Time > it's better than not doing anything at all. > I have always wondered why it takes a neurologist > so long to see their > patients. I called 2 Days ago to make an appt. They > set it for May 10th. > Don't do like I did,though. As frustrating as this > may be, you still need > to keep your appts. I know it seems like a waste of > time. Oh boy, do I. But, > this is important. It's your life. > I'll close for now. Have a blessed day.... > > > > -- Re: Re: symptoms > > thanks for your kind words, Deborah! I had my appt > yesterday but don't know how helpful it was. The > fax > of my medical records had not arrived yet so the > doctor had basically no info from previous MRIs. He > did a very brief neurological exam and said that > everything was in the normal range. He suggested > that > the trazodone I take at night for sleep might > contribute to fatigue but didn't want to make any > med > changes. In fact, he did not want to do anything > but > see me back in several weeks after he's received the > fax from the states. So, I felt as though I had > wasted my own time and the time of the friend who > drove me there. > > Robin > > --- Deborah wrote: > > > Hi Robin ~ I'm really glad to hear you have your > > appt. already. It > > must be very hard on you to be in a foreign > country > > & have to depend on > > others to help. I know exactly what you mean > about > > walking becoming > > exhausting. I get cramps in my legs & hips & > lower > > back as well - and I > > absolutely HATE steps...I also have that > nerve-burn > > pain all across the > > tops of my shoulders - even when I'm just sitting > > here - but give me > > something to carry & it's 10 times worse. From > our > > parking lot to the > > apartment feels like a mile when I have groceries. > > > I know you're unsure > > of how you will manage with your 4 year old, but I > > think with the proper > > medication you'll be ok - but it might be good to > > have someone to watch > > her on days that you don't feel so hot - maybe a > > neighbor you trust, or > > something, because I know there may be those kinds > > of days, and it IS > > hard with a little one. I really wish good things > > for you - it breaks > > my heart that you're having such a rough > time...but > > seeing the doctor is > > #1 - and then maybe finding a way to rest & not > have > > to worry about your > > little one - at least for a few hours may help, > > also. I send you my > > best kharma and I'll pray for you that things look > > up. Sorry I blabbed > > on forever, I just feel your pain, and wish it > would > > go away for you. > > Good luck & God bless you & your daughter. debbie > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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