MS for life
07-11-2007, 10:20 AM
Well, yesterday my neurologist gave me the dreaded news I had a hunch was coming. Whereas I only have nine lesions on my MRI, two are quite large and they simply cannot be ignored. He took nine vials of blood, signed me up for another MRI of the neck/spine, an ultrasound for something, an EKG to rule out mini strokes and some test for my hand to be sure I don't have carpal tunnel on top of it. He, however, is leaning towards a diagnosis of MS.
He gave me literature, did quite a few tests in the office and asked me many questions. So we are trying to decide if anything else could be the problem for my symptoms (mainly my hands and feet continually fall asleep at night and during the day, fatigue, trouble concentrating). My Internal Medicine doctor already ran a slew of blood tests to rule out a number of other problems. His "homework" assignment was to find out as much as I could on MS so that I could be informed at our next visit and to discuss starting on medication to keep it from getting worse. I am an incredibly healthy person otherwise. My cholesterol for a 40-year-old is better than most 20-year-olds, my blood pressure, weight, etc. are great. I am hypothyroid, but have had it under control for years.
So, assuming the MS comes back as the main diagnosis, I need to have two questions answered.
1. I own my own business as a transcriptionist with employees under me that count on me for their jobs. I do not want to mislead them or my accounts. Can I continue to type if things start getting worse? And will my concentration/fatigue get better by starting on the drugs or will they just not get worse?
2. I am an avid runner. I don't run fast, but I am currently running three to five miles three to four times a week. I've always wanted to try running a marathon. I made it to a half marathon a few years back and was hoping to try to train for the big one soon. Is this out of the question? Will I have to switch sports soon or can I continue with my running. Those times alone, sweating, are what sometimes keep my hectic life in order.
I'm sure there will be many more, but the two questions in regards to my job and my favorite hobby seem like a good starting point.
He gave me literature, did quite a few tests in the office and asked me many questions. So we are trying to decide if anything else could be the problem for my symptoms (mainly my hands and feet continually fall asleep at night and during the day, fatigue, trouble concentrating). My Internal Medicine doctor already ran a slew of blood tests to rule out a number of other problems. His "homework" assignment was to find out as much as I could on MS so that I could be informed at our next visit and to discuss starting on medication to keep it from getting worse. I am an incredibly healthy person otherwise. My cholesterol for a 40-year-old is better than most 20-year-olds, my blood pressure, weight, etc. are great. I am hypothyroid, but have had it under control for years.
So, assuming the MS comes back as the main diagnosis, I need to have two questions answered.
1. I own my own business as a transcriptionist with employees under me that count on me for their jobs. I do not want to mislead them or my accounts. Can I continue to type if things start getting worse? And will my concentration/fatigue get better by starting on the drugs or will they just not get worse?
2. I am an avid runner. I don't run fast, but I am currently running three to five miles three to four times a week. I've always wanted to try running a marathon. I made it to a half marathon a few years back and was hoping to try to train for the big one soon. Is this out of the question? Will I have to switch sports soon or can I continue with my running. Those times alone, sweating, are what sometimes keep my hectic life in order.
I'm sure there will be many more, but the two questions in regards to my job and my favorite hobby seem like a good starting point.
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duttin
07-11-2007, 10:31 AM
Welcome,
To answer your questions,there's many here that work 40 plus hours a week and have successful jobs.For the typing if it becomes difficult ,there's programs available,Dragon naturally speaking is one.You speak into a micro phone and it types for you.
As for the runnimg,no it won't harm you,the more active the better for you.I wish I could run.My MS has targetted my legs ,PT has helped.
Most with MS don't have to change their life style,yes you'll have some bad days,but heck healthy people have them.
I was Dx'd at 40 also.Would offer more but better get to PT.
You'll find great support here.
To answer your questions,there's many here that work 40 plus hours a week and have successful jobs.For the typing if it becomes difficult ,there's programs available,Dragon naturally speaking is one.You speak into a micro phone and it types for you.
As for the runnimg,no it won't harm you,the more active the better for you.I wish I could run.My MS has targetted my legs ,PT has helped.
Most with MS don't have to change their life style,yes you'll have some bad days,but heck healthy people have them.
I was Dx'd at 40 also.Would offer more but better get to PT.
You'll find great support here.
TXChica70
07-11-2007, 10:46 AM
Don't let MS change your life until you have to. Keep working, keep running, keep doing what you do. The worst thing you can do is start to let a dx of MS change your life because that's when depression sets in and stress and nothing is worse for MS than stress.
As for the drugs, they won't help the symptoms you're already experiencing but there's a good chance your symptoms will go away on their own. If you have RRMS, then this is most likely the case. The drugs will help to slow down the progression of the disease and hopefully keep future attacks from happening sooner and maybe make the next attack not so bad. Can be years between attacks to so having MS isn't necessarily the worst thing. I would certainly rather have MS than a brain tumor.
Good luck and keep posting.
As for the drugs, they won't help the symptoms you're already experiencing but there's a good chance your symptoms will go away on their own. If you have RRMS, then this is most likely the case. The drugs will help to slow down the progression of the disease and hopefully keep future attacks from happening sooner and maybe make the next attack not so bad. Can be years between attacks to so having MS isn't necessarily the worst thing. I would certainly rather have MS than a brain tumor.
Good luck and keep posting.
PghGuy00
07-11-2007, 01:25 PM
Just keep doing what you're doing?!!!! I was a bodybuilder when I was probable DXd 3 years ago, Fully Dxd, last year. I still am a bodybuilder. 5-6x week pumping iron!! I am a fully-employed professionsal (translation 45+ hrs per week the norm). I have great days and not-so great days. When I was on Avonex, feeling like crap, I still pushed myself. PUshing oneself is a great motivator in this MS world. Also, there is something to be said for denial. 95% of the time I am in denial about this MS crap and I'm very happy for that.
BTW, Provigil has done wonderful things for my fatigue. Definately check it out.
BTW, Provigil has done wonderful things for my fatigue. Definately check it out.
PghGuy00
07-11-2007, 03:27 PM
Oh BTW, I do some running at times for cardio, but last week I did 6 miles at one time!! Never did that before, ever!!
rachel4123
07-11-2007, 04:15 PM
PghGuy00
- Can I ask if you are currently on meds? You said when you were on Avonex...are you still?
I am in dx limboland. Have had dizziness / imbalance for 2.5 years. Drs stumped. MS was mentioned. but I don't have anything on MRI to show.
Was just wondering how you get your energy becasue I heard the meds kick your butt.
Sounds like you are doing great. What were your initial symptoms and what do you have now?
thanks. Rachel
- Can I ask if you are currently on meds? You said when you were on Avonex...are you still?
I am in dx limboland. Have had dizziness / imbalance for 2.5 years. Drs stumped. MS was mentioned. but I don't have anything on MRI to show.
Was just wondering how you get your energy becasue I heard the meds kick your butt.
Sounds like you are doing great. What were your initial symptoms and what do you have now?
thanks. Rachel
PghGuy00
07-11-2007, 10:51 PM
HIya Rachel,
I was on Avonex for almost 10 months. I got sick as hell from it and my body never did adjust to it. Currently I am only taking Provigil 200mg/2 per day. My symptoms have been mostly minor annoyances but have had vision probs in my right eye for nearly 20 yrs. (Never thought of it being MS related until 3 yrs ago) I get the needle and pins feelings that come and go along with fingers and arms locking up at times. But those go away. I go get fatigue and the heat does bother me at times. (especially these past few weeks here in Pittsburgh). The Provigil has really helped combat the fatigue and I notice that mentally I am back to normal. ( I didnt realize that I was having problems with mental fatigue until I started taking Provigil. That's when I realized WOW, I'm my old self again).
I have been asked by my neuro to participate in the FTY720 trials and I am scheduled to start in mid-Aug.
I was on Avonex for almost 10 months. I got sick as hell from it and my body never did adjust to it. Currently I am only taking Provigil 200mg/2 per day. My symptoms have been mostly minor annoyances but have had vision probs in my right eye for nearly 20 yrs. (Never thought of it being MS related until 3 yrs ago) I get the needle and pins feelings that come and go along with fingers and arms locking up at times. But those go away. I go get fatigue and the heat does bother me at times. (especially these past few weeks here in Pittsburgh). The Provigil has really helped combat the fatigue and I notice that mentally I am back to normal. ( I didnt realize that I was having problems with mental fatigue until I started taking Provigil. That's when I realized WOW, I'm my old self again).
I have been asked by my neuro to participate in the FTY720 trials and I am scheduled to start in mid-Aug.
rachel4123
07-12-2007, 03:39 PM
Hi Lorna -
Thanks for responding and I would like to know what you do. As well as what were your first symptoms that dx you and what do you have now? How old are you?
Sorry for all the questions.
I take Omega fatty acids which i heard are good, but I have taken them for a few years. I don;t know what is wrong with me, so I don;t know what to take...
Thanks for responding and I would like to know what you do. As well as what were your first symptoms that dx you and what do you have now? How old are you?
Sorry for all the questions.
I take Omega fatty acids which i heard are good, but I have taken them for a few years. I don;t know what is wrong with me, so I don;t know what to take...
MS for life
07-13-2007, 12:06 AM
Okay, had my nerve conductivity test today to see if I have carpal tunnel and everything came out fine, he said I definitely did not have that on top of the possible MS. That was a relief. He did ask if I had done my homework on reading up on MS and the medications. I said yes, however thought it funny he never mentioned the word injection to me at our first visit. He apologized, then asked if my husband could help. So at dinner today, I told my usually very sweet and helpful husband and he looked like he was going to faint at the idea. My 17-year-old son who loved disecting a cat last year in his HS Anatomy class stated he would be happy to learn. I'm thinking I should try to do it on my own, any suggestions?
Tomorrow I go to have another MRI, this time of my spine and an ultrasound as I have a history of a miscarriage and this is supposed to rule out something, and I cannot remember. The only other test after that will be an EKG to be sure my spots on the MRI are not mini strokes. The doctor told me I am a VERY healthy 43-year-old and to consider jumping right in and attacking this disease head on by starting the medication if the tests turn out the way he thinks they might.
So, today is a much more positive day than yesterday, but I'm sure there will be many more ups and downs. My only concern is still the adjusting to the Betaseron during the first few months. My life is very busy and hectic and I know this is probably another hint from God to slow things down, but I'm not sure how quickly I can get that done. I'm not sure I'm really looking for responses, but more the chance to put what's going on in my head down on paper.
Tomorrow I go to have another MRI, this time of my spine and an ultrasound as I have a history of a miscarriage and this is supposed to rule out something, and I cannot remember. The only other test after that will be an EKG to be sure my spots on the MRI are not mini strokes. The doctor told me I am a VERY healthy 43-year-old and to consider jumping right in and attacking this disease head on by starting the medication if the tests turn out the way he thinks they might.
So, today is a much more positive day than yesterday, but I'm sure there will be many more ups and downs. My only concern is still the adjusting to the Betaseron during the first few months. My life is very busy and hectic and I know this is probably another hint from God to slow things down, but I'm not sure how quickly I can get that done. I'm not sure I'm really looking for responses, but more the chance to put what's going on in my head down on paper.
PghGuy00
07-13-2007, 05:55 AM
Hmmm, sorta surprised at Betaseron and not avonex or rebif, but I guess each Dr has their preference. Doing shots is actually easy and slick. When you do your first one, you'll say to yourself, "Why did I worry about this"
MS for life
07-13-2007, 02:16 PM
Hmmm, sorta surprised at Betaseron and not avonex or rebif, but I guess each Dr has their preference. Doing shots is actually easy and slick. When you do your first one, you'll say to yourself, "Why did I worry about this"
I still have a few weeks before starting the medications. Why would you say one over the other? I have not started my homework there yet, so if you could get me started, it would be appreciated. Thanks.
I still have a few weeks before starting the medications. Why would you say one over the other? I have not started my homework there yet, so if you could get me started, it would be appreciated. Thanks.
PghGuy00
07-14-2007, 08:02 AM
Hey MS4Life
Well it sorta sounds like you are where I am. The symptoms are there, but theyre not severe and it sounds like you lead a pretty healthy, active life and the MS does not seem to interfere. I believe Betaseron is an inject done on every other day, whereas Avonex is once a week and Rebif 3x week. My neuro had me on Avonex based upon it being only 1x/week and my symptoms were only minor. I will tell you though, I did not have a pleasant time with it. It was unpredictable as to its impact on me that week. One week I could be fine (maybe only sick for a 1day or 1 1/2 days, then sometimes it could go for 3+ days) After 10 months of that yooyoo, I decided NO MORE!! However, my neuro explained that some people just never build up a tolerance for it and that it flushes out of their system, so each week is like the first time all over again. The once a week inject is convenient. I used to do mine around 6pm on Saturday, then I had about a 5 hour window of opportunity to go out to dinner, drinks etc, before I felt it's effects kicking in.
Now for Rebif, I dont know if people have the same side-effects. I'm told that due to it being 3x/wk the tolerance builds up faster and that any side-effects go away after a short period of time. Maybe someone on here who is on Rebif can opine.
Well it sorta sounds like you are where I am. The symptoms are there, but theyre not severe and it sounds like you lead a pretty healthy, active life and the MS does not seem to interfere. I believe Betaseron is an inject done on every other day, whereas Avonex is once a week and Rebif 3x week. My neuro had me on Avonex based upon it being only 1x/week and my symptoms were only minor. I will tell you though, I did not have a pleasant time with it. It was unpredictable as to its impact on me that week. One week I could be fine (maybe only sick for a 1day or 1 1/2 days, then sometimes it could go for 3+ days) After 10 months of that yooyoo, I decided NO MORE!! However, my neuro explained that some people just never build up a tolerance for it and that it flushes out of their system, so each week is like the first time all over again. The once a week inject is convenient. I used to do mine around 6pm on Saturday, then I had about a 5 hour window of opportunity to go out to dinner, drinks etc, before I felt it's effects kicking in.
Now for Rebif, I dont know if people have the same side-effects. I'm told that due to it being 3x/wk the tolerance builds up faster and that any side-effects go away after a short period of time. Maybe someone on here who is on Rebif can opine.
MS for life
07-14-2007, 08:45 AM
PGYGuy00, what are you on now? Did you stop the Avonex? I don't like the part about never getting used to it. I do like the once a week injection.
I weigh in at 110 pounds on a good day, meaning less more often. I am 5'3" and I am also on medication for hypothyroidism and Mitral Valve Prolaspe. Other than these two issues which are under control, I would consider myself a very healthy person. My cholesterol is better than most 20 year olds (I'm 43) and my blood pressure is very low. My GP even laughs that most people start having their labs get worse once they turn 40, and mine keep getting better.
So that said, I do have a sensitive stomach and the side effects are sounding really crummy right now. I guess I will keep reading. Thanks for the input.
I weigh in at 110 pounds on a good day, meaning less more often. I am 5'3" and I am also on medication for hypothyroidism and Mitral Valve Prolaspe. Other than these two issues which are under control, I would consider myself a very healthy person. My cholesterol is better than most 20 year olds (I'm 43) and my blood pressure is very low. My GP even laughs that most people start having their labs get worse once they turn 40, and mine keep getting better.
So that said, I do have a sensitive stomach and the side effects are sounding really crummy right now. I guess I will keep reading. Thanks for the input.
PghGuy00
07-14-2007, 10:13 AM
Right now, I am not on anything except Provigil for fatigue. Ive been off Avonex for appox 3 months. I feel great. Though I have noticed that the heat seems to bother me more this year than last and I sometimes do get a bit more worn-out than I used to before. I am an exercise freak and I do workout hard and also took up kickboxing 6 months ago. I have to admit I am in better health and shape now than ever in my life.
I will be starting the FTY720 (fingolimod) clinical trial next month. Of course I will not know if I get the real thing or the placebo, but I thought that being I am in decent health and that my symptoms are minimal, I would try the trial with the hopes that maybe I will have helped anyone in the future who develops MS.
I will be starting the FTY720 (fingolimod) clinical trial next month. Of course I will not know if I get the real thing or the placebo, but I thought that being I am in decent health and that my symptoms are minimal, I would try the trial with the hopes that maybe I will have helped anyone in the future who develops MS.
hayshe
07-15-2007, 10:38 AM
Wow, exercising and kickboxing, I can't even imagine that. Great for you. I try to use a stationary air bike to exercise my legs some, but must be very careful how much I do. As far as those clinical trials, I have heard nothing but great news on this new treatment. Take Care
DENNISE12
07-17-2007, 06:04 PM
Try Looking Up Ldn For Ms Low Dose Naltexone My Son Has Just Started On It, Only Been Taking It For 7 Days Feels Better Already
moore170
07-20-2007, 05:39 PM
LDN did not do anything for me but I have read many good reports. This is why I tried it. YOGA seems to be the best exercise as far as my body is concerned. I think exercise, whatever is best for you, is essential.
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