colleen2165
11-14-2008, 03:26 AM
Hi all,
Dxn june 2002. Things seemed to go fine until this year. Oh what pain. How it all effects your life. Pain around my torso(ms hug????) for the last 7 months. Nero then thought it could be something other than M.S. What? more tests, mri, spinal tap etc. Now they say yes it is M.S.! now taking 2400mg day gabapentin and 25mg amitriptyline increasing by 100mg gabapentin til i'm up to 3600mg. Is this working. I feel like a zombie and just want to feel good again.@#!%$. so frustrated. And what damage is all these drugs doing? Sorry for venting.!!!
Dxn june 2002. Things seemed to go fine until this year. Oh what pain. How it all effects your life. Pain around my torso(ms hug????) for the last 7 months. Nero then thought it could be something other than M.S. What? more tests, mri, spinal tap etc. Now they say yes it is M.S.! now taking 2400mg day gabapentin and 25mg amitriptyline increasing by 100mg gabapentin til i'm up to 3600mg. Is this working. I feel like a zombie and just want to feel good again.@#!%$. so frustrated. And what damage is all these drugs doing? Sorry for venting.!!!
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MSJayhawk
11-14-2008, 10:17 AM
I hear you. MS can be frustrating. I do not know about the meds because I am med free (26 years). I have found that my pain tolerances have increased and, though I am disabled by MS, I laugh off the MS. That is, I choose to lock my MS in the hallway closet. I find that if I take the focus off of my condition and target other things to do or others to help, my MS becomes only a minor inconvenience.
stormonto57
11-14-2008, 02:31 PM
Hi I am on 1800 mg of Gabapentin a day and I was told by my MS nurse to increase it by 100 mg a day until the pain went. It went at 1800mg and I feel fine. I don't take Amitryptoline and from what I've heard from a friend of mine who is on it, it makes you tired the next day. She only takes half a tablet at night now. You don't have to feel like a zombie when you're on medication, just adjust it to suit you. I'm in England and we have the MS nurse who supports and prescribes, do you have anyone like that who can help you? Good luck.
colleen2165
11-15-2008, 05:23 AM
Thanks for writting me back.
First of all, Good for you for not having to take any meds msjayhawk. It sounds like you have a GREAT attitude.
RE: Stormonto. Thanks for replying to me. Did you start off only taking 100mg a day or did you start at 1800mg. Does this med take time for your body to adjust? I started off at 1600 mg a day for the first week and then jumping right to 2400mg for the 2nd week and then Dr. wanted me to increase it by an extra 100mg a day til I reached 3600mg. I still have a lot of pain it's just not so intense. I have alot of lesions on my spine which is causing me spasms,itching, burning pain on my back and front. Where is your pain? How long have you had MS? Are you on any of the injections? I'm on Copaxone which is a every day injection.
Nice chatting with you both, and again thank you for replying.
Take care
First of all, Good for you for not having to take any meds msjayhawk. It sounds like you have a GREAT attitude.
RE: Stormonto. Thanks for replying to me. Did you start off only taking 100mg a day or did you start at 1800mg. Does this med take time for your body to adjust? I started off at 1600 mg a day for the first week and then jumping right to 2400mg for the 2nd week and then Dr. wanted me to increase it by an extra 100mg a day til I reached 3600mg. I still have a lot of pain it's just not so intense. I have alot of lesions on my spine which is causing me spasms,itching, burning pain on my back and front. Where is your pain? How long have you had MS? Are you on any of the injections? I'm on Copaxone which is a every day injection.
Nice chatting with you both, and again thank you for replying.
Take care
april1848
11-15-2008, 04:16 PM
Hi Colleen. I was given gabapentin too, with pretty much the same dosing schdule as you. I was taking 1500 mg to start and it did make me feel like a zombie. I probably didn't give it enough time for me to get used to it, but I couldn't take it and be productive at work at the same time. Plus of course they wanted me to up my dosage, and the fatigue/drunken feeling I got from the low dose scared me away. I'm tired enough without it! I did save the meds though in case I decide to start over. It does take time for Neurontin to start working and for your body to adjust, so if it's decreasing your pain, it may be well worth it in the end. Let me know how it goes, since I'm totally undecided on it now.
I have lesions on my c-spine too, and it seems like we have a lot of the same symptoms--mine are mostly sensory. I get bad spasms too, and last night (shot night, I do Avonex) I couldn't relax my leg muscles at all, and I'm pretty sore today.
I worry too about the damage all the meds I'm on are doing, but I have blood tests to check my liver every three months, and so far so good. Welcome to the site!
I have lesions on my c-spine too, and it seems like we have a lot of the same symptoms--mine are mostly sensory. I get bad spasms too, and last night (shot night, I do Avonex) I couldn't relax my leg muscles at all, and I'm pretty sore today.
I worry too about the damage all the meds I'm on are doing, but I have blood tests to check my liver every three months, and so far so good. Welcome to the site!
stormonto57
11-15-2008, 05:53 PM
Hi Colleen, I have PPMS and have been diagnosed for 12 years. I only started taking medication this year, cos the pain and water work problems became too much. The pain I get is nerve pain in my legs, like boiling water running down my legs, and an awful itchy, crawling feeling across my chest and right shoulder. I started on 100mg of Gabapentin twice a day for a week and the second week I put it up to 100mg three times a day. The third week I was taking 200mg three times a day and went up like that until I reached a dose that got rid of the pain. My MS nurse told me that by doing it slowly it reduces the risk of side effects, and I haven't had any. I am not on any injections all I have is Gabapentin and Oxybutinin patches. Good Luck.
colleen2165
11-16-2008, 02:57 AM
What is Oxy... patches?
And oh how I can relate with the boiling water running down your leg(mine goes from my hip to my ankle both sides) and the awful deep itchy crawling feeling across my front and back (EACH NERVE). good decription you nailed it. I wish you a pain free day!!
And oh how I can relate with the boiling water running down your leg(mine goes from my hip to my ankle both sides) and the awful deep itchy crawling feeling across my front and back (EACH NERVE). good decription you nailed it. I wish you a pain free day!!
colleen2165
11-16-2008, 03:04 AM
April, thanks for your letter. I cried when I read it! You decribed my symptoms and what it feel like to a tee. No one that I know with MS have the same symptoms as me, so I kinda of always felt like"oh that's not what I'm feeling" most of them have eye problems, use a cane, etc. and no pain or sensory issues like me. Thank you again and I will let you know if the med dosage gets corrected. I just have to get thru this drunken zombie stage I guess.
april1848
11-16-2008, 03:41 PM
I hear you. I've only needed a cane a handful of times, the pain and sensory symptoms are what hit me the hardest. I too have had the wet feeling--sometimes my ankles and calves feel wet when they're not. I"ve never had eye problems either. I guess it all depends where the lesions are.
With sensory symptoms, it's a double-edged sword. On one hand, it's easier to "hide" your MS when you want to. On the other hand, when you feel really lousy and you want to convince someone else how bad you feel, it's very hard because you look just fine. My calves are all scratched up and scarred from "phantom itching" but nobody sees that. SOmetimes due to spasticity I walk very stiffly, but that's about it. It's pretty invisible.
I've had trouble convincing some of my family that MS is a real disease. MS doesn't make anyone ugly or sickly-looking, so people don't want to believe it. My dad still thinks I'm a hypochondriac. I also feel guilty and worried because I don't want people to see me as "lazy" when I'm really not. I work very hard at my job and I'm successful at it, Friday night I inject, and Saturdays I'm sick. I do my best! My family has some kind of party almost every week, and I've had to turn down a lot of them. I don't want to think I'm lazy or I don't love them anymore.
About my Avonex injections: I"ve been on them for a year now and some people don't understand why I still get sick from them. I don't get nearly as sick now as I did a year ago, but I'm still feeling bad enough to take it easy on Saturdays. I'm optimistic that they will get better, but I wish people would get that while most people stop having side effects after 6 months, others don't. I met a lady who's been on Avonex for two years and she gets much sicker than I do. We're all different.
It took some time and hard work to convince my husband that I needed some help and support from him. He finally gets it. He's helping around the house a lot more and running errands. He can be very sweet, and sometimes when he can tell I am feeling terrible, he makes a point of telling me that I look beautiful. He sticks up for me when my family says things--like when my mom said that my MS ruined her birthday. We're getting there, but it's not easy!
That's why I like to do most of my whining and venting here; I don't whine this much in my "real" life because I don't want to be percieved as "that person". Being judged by others, rightly or wrongly, doesn't bother me. But when I'm judged because of MS, it really bothers me a lot. It's not good for anyone to let these bad feelings bottle up and fester, so feel free to vent here.
I'm wishing good health for us all!
With sensory symptoms, it's a double-edged sword. On one hand, it's easier to "hide" your MS when you want to. On the other hand, when you feel really lousy and you want to convince someone else how bad you feel, it's very hard because you look just fine. My calves are all scratched up and scarred from "phantom itching" but nobody sees that. SOmetimes due to spasticity I walk very stiffly, but that's about it. It's pretty invisible.
I've had trouble convincing some of my family that MS is a real disease. MS doesn't make anyone ugly or sickly-looking, so people don't want to believe it. My dad still thinks I'm a hypochondriac. I also feel guilty and worried because I don't want people to see me as "lazy" when I'm really not. I work very hard at my job and I'm successful at it, Friday night I inject, and Saturdays I'm sick. I do my best! My family has some kind of party almost every week, and I've had to turn down a lot of them. I don't want to think I'm lazy or I don't love them anymore.
About my Avonex injections: I"ve been on them for a year now and some people don't understand why I still get sick from them. I don't get nearly as sick now as I did a year ago, but I'm still feeling bad enough to take it easy on Saturdays. I'm optimistic that they will get better, but I wish people would get that while most people stop having side effects after 6 months, others don't. I met a lady who's been on Avonex for two years and she gets much sicker than I do. We're all different.
It took some time and hard work to convince my husband that I needed some help and support from him. He finally gets it. He's helping around the house a lot more and running errands. He can be very sweet, and sometimes when he can tell I am feeling terrible, he makes a point of telling me that I look beautiful. He sticks up for me when my family says things--like when my mom said that my MS ruined her birthday. We're getting there, but it's not easy!
That's why I like to do most of my whining and venting here; I don't whine this much in my "real" life because I don't want to be percieved as "that person". Being judged by others, rightly or wrongly, doesn't bother me. But when I'm judged because of MS, it really bothers me a lot. It's not good for anyone to let these bad feelings bottle up and fester, so feel free to vent here.
I'm wishing good health for us all!
stormonto57
11-16-2008, 04:25 PM
The hot water feeling is awful, but I think that the crawling itchy feeling is worse, I felt like there was something under my skin trying to get out. OOh!!!
stormonto57
11-16-2008, 04:27 PM
Oxybutinin patches are used for urge incontinence, to stop bladder spasms. the patch is stuck to the top of your arm and:jester: releases a dose of the drug for 3 months, then you change it. The patch is used instead of the tablet so you don't have to swallow more tablets. I also don't have any eye problems, for 6 years no one could tell that anything was wrong with me. Now I have problems walking but I still have sensory pain etc. Most of the people I know with MS have eye problems, it seems to be very common in this condition.
colleen2165
11-17-2008, 01:58 PM
That's really interesting. And does it work well?
colleen2165
11-17-2008, 04:11 PM
Hi April,
Can I ask you why Avonex and not any of the other abc medications. I was put on Beta for the first year and I had flu like symptoms that entire year. Then my nero put me on Ribif and the same things happened. He then advised me to try Copaxone and it,s been fine. You can have a side effect of feeling like you can't breath chest tightness. Which I Have experienced 2 times and it was scary but it only lasted a few minutes. Ive been on Copaxone now for about 2 1/2 years. You should look into this. It is is a daily injection but it doesn't cause any flu like symptoms.
I'm so glad that you have an understanding husband. I do to. My husband has been fantastic, he now does the grocery shopping, helps with laundry, supper, changeing bedding, vacumns, but to date no bathroom cleaning! I'll have to work on that!LOL.
I too have people thinking I'm a hypochondriac. I guess it's cause my description of my symptoms (for that day )always changes. ( sometimes hour by hour). And like when you say "you don't want people to think your lazy" I'm sure some of our close friends think that I'm lazy. They have no idea that it's fatigue, just total exhaustion.
Have you heard about "stem cell" trials in Isdrael. It sounds very, very promising. The news siad that Canada will start some trials next year. So I'm definetly going to look into this, cause it seems very promising.
Well I wish you a pain free day.
And again I thank you for your very interesting, emotional emails.
Your new friend,
Colleen
Can I ask you why Avonex and not any of the other abc medications. I was put on Beta for the first year and I had flu like symptoms that entire year. Then my nero put me on Ribif and the same things happened. He then advised me to try Copaxone and it,s been fine. You can have a side effect of feeling like you can't breath chest tightness. Which I Have experienced 2 times and it was scary but it only lasted a few minutes. Ive been on Copaxone now for about 2 1/2 years. You should look into this. It is is a daily injection but it doesn't cause any flu like symptoms.
I'm so glad that you have an understanding husband. I do to. My husband has been fantastic, he now does the grocery shopping, helps with laundry, supper, changeing bedding, vacumns, but to date no bathroom cleaning! I'll have to work on that!LOL.
I too have people thinking I'm a hypochondriac. I guess it's cause my description of my symptoms (for that day )always changes. ( sometimes hour by hour). And like when you say "you don't want people to think your lazy" I'm sure some of our close friends think that I'm lazy. They have no idea that it's fatigue, just total exhaustion.
Have you heard about "stem cell" trials in Isdrael. It sounds very, very promising. The news siad that Canada will start some trials next year. So I'm definetly going to look into this, cause it seems very promising.
Well I wish you a pain free day.
And again I thank you for your very interesting, emotional emails.
Your new friend,
Colleen
colleen2165
01-08-2009, 11:25 PM
Well it now Jan 8/09 and I have been taking gabapentin2400 mg since beginning Nov /08 and guess what the pain is coming back and it seems so much more intence. I have also gained 24lbs on this medicine!@#!@.:mad: My gp said we will change it to Topamax as soon as he tapers off my gabapentin. Still waiting for my Nero dr. to calll me back before I make any changes( cos the last time i took my gp's advise the Nero Dr. lookes peed-off. I am now not only still in incredably pain I' 24lbs heavier. I am so upset and don't know what to do or how to believe. Has anyone heard of Topamax???
MSJayhawk
01-09-2009, 12:04 PM
Well it now Jan 8/09 and I have been taking gabapentin2400 mg since beginning Nov /08 and guess what the pain is coming back and it seems so much more intence. I have also gained 24lbs on this medicine!@#!@.:mad: My gp said we will change it to Topamax as soon as he tapers off my gabapentin. Still waiting for my Nero dr. to calll me back before I make any changes( cos the last time i took my gp's advise the Nero Dr. lookes peed-off. I am now not only still in incredably pain I' 24lbs heavier. I am so upset and don't know what to do or how to believe. Has anyone heard of Topamax???
I would (my opinion only) ask both doctors to speak or consult with one another before either prescribes anything. If you have neurological problems, I believe you should have your neuro treat you and let your GP know. ANything outside of the neurological realm, your GP can handle as long as a consult has taken place with the neuro.
Meds can certainly cause weight gain as a side effect. I would ask for a different treatment regime as the weight gain can be detrimental.
I would (my opinion only) ask both doctors to speak or consult with one another before either prescribes anything. If you have neurological problems, I believe you should have your neuro treat you and let your GP know. ANything outside of the neurological realm, your GP can handle as long as a consult has taken place with the neuro.
Meds can certainly cause weight gain as a side effect. I would ask for a different treatment regime as the weight gain can be detrimental.