fancycanelady
06-08-2005, 11:30 PM
Hi,
My story is a lot like "Curlygurl"s (one can only hope to be like her!!!). I was first dx in 1970 when I was 20. I had 3 spinal taps (no such thing as an MRI in those days), due mainly to losing 1/2 the sight in my right eye. Docs came back with an MS dx and because I was also being treated for a debilitating kidney diease for which there was no cure (at least there wasn't at that time!), they told me that I'd never be able to carry and take care of a child, so on their (several of them) advice, I had my tubes tied. 8 years went by and I had what was called a very mild case of MS. Then, a cure was found for my kidney problems, so at least that stress was behind me. However with various testing, now they told me I did NOT have MS, but couldn't tell me why I was still experiencing some symptoms of it. This went back and forth for years, so I never told anybody that I "might" have MS, just went about my business and tried to keep up with daily routines. Now, I've just turned 50 and started experiencing MAJOR problems. Had another MRI and sure enough, NOW they say I've had MS all along and now there are more lesions. I have 6 in all. I guess the earlier stuff only showed 2 and the spinal taps back in 1970 were guesswork at best. I use a cane now, but hope to only have to use it sparingly once this episode passes. Way back when they offered you no meds, but now I'm being offered the standard choice of 4. My question to anybody out there who reads this is - do these meds really help, and how hard is it to learn to give yourself these shots? I have a wonderful, supportive and super husband who would also learn and help me out. He notices my symptoms faster than I do at times!
In your case "mom of two", I would try to maintain a very postive attitude and know just how far modern medicine has come in the last 30-40 years. Life is (and can always be!) GOOD!
P.S. Even though I had my tubes tied and a subsequent hysterectomy due to other problems later, when I married my husband, he had a 2 yeard old girl who I helped raise, and she is now married and has blessed us with the most beautiful granddaughter in the world, who is now 2 and takes my cane in stride! Take care everybody!!
Quick Reply
Message:
My story is a lot like "Curlygurl"s (one can only hope to be like her!!!). I was first dx in 1970 when I was 20. I had 3 spinal taps (no such thing as an MRI in those days), due mainly to losing 1/2 the sight in my right eye. Docs came back with an MS dx and because I was also being treated for a debilitating kidney diease for which there was no cure (at least there wasn't at that time!), they told me that I'd never be able to carry and take care of a child, so on their (several of them) advice, I had my tubes tied. 8 years went by and I had what was called a very mild case of MS. Then, a cure was found for my kidney problems, so at least that stress was behind me. However with various testing, now they told me I did NOT have MS, but couldn't tell me why I was still experiencing some symptoms of it. This went back and forth for years, so I never told anybody that I "might" have MS, just went about my business and tried to keep up with daily routines. Now, I've just turned 50 and started experiencing MAJOR problems. Had another MRI and sure enough, NOW they say I've had MS all along and now there are more lesions. I have 6 in all. I guess the earlier stuff only showed 2 and the spinal taps back in 1970 were guesswork at best. I use a cane now, but hope to only have to use it sparingly once this episode passes. Way back when they offered you no meds, but now I'm being offered the standard choice of 4. My question to anybody out there who reads this is - do these meds really help, and how hard is it to learn to give yourself these shots? I have a wonderful, supportive and super husband who would also learn and help me out. He notices my symptoms faster than I do at times!
In your case "mom of two", I would try to maintain a very postive attitude and know just how far modern medicine has come in the last 30-40 years. Life is (and can always be!) GOOD!
P.S. Even though I had my tubes tied and a subsequent hysterectomy due to other problems later, when I married my husband, he had a 2 yeard old girl who I helped raise, and she is now married and has blessed us with the most beautiful granddaughter in the world, who is now 2 and takes my cane in stride! Take care everybody!!
Quick Reply
Message:
Sponsor
baddoey
06-09-2005, 10:19 AM
I've just started down this MS road and just began doing daily copaxone shots - are they working? who knows. that is the thing, they are supposed to slow it down and not really repair what damage is there. I wish I could answer that question for you - many people on these boards do say that the severity of their attacks was reduced by medication. As far as doing the shots, they hurt a little bit, but no real problems in doing them. they give you this auto-ject thing that really does it for you. . many people do it without the auto-ject, but i'm just not there yet.
fancycanelady
06-09-2005, 11:08 AM
Thanks baddoey,
Isn't copaxone the one that doesn't give you the flu-like side effects? But it's daily compared to the others that are weekly, semi- weekly, etc... Can you explain what an "auto-ject" is? Does that mean you just aim it at the part of your body and push a button as opposed to plunging down on a syringe? I'm such a chicken!! Do you take it at night?
Isn't copaxone the one that doesn't give you the flu-like side effects? But it's daily compared to the others that are weekly, semi- weekly, etc... Can you explain what an "auto-ject" is? Does that mean you just aim it at the part of your body and push a button as opposed to plunging down on a syringe? I'm such a chicken!! Do you take it at night?
KelliD
06-09-2005, 11:53 AM
Hi FancyCanelady! Just read your last post here. Autoinject basically is just a matter of putting the injector in the right spot and pressing a button.
I heard Biogen is developing that for Avonex, but for now I do it the old fashioned way. Believe it or not, though it's not the most pleasant thing to have to do to yourself, you do get used to it.
I think the four major meds being offered for MS right now all operate the same way...they are designed to slow the progression of MS. I've been on Avonex for about a year and a half and my symptoms - when they flare - are not nearly as harsh as "before" Avonex. Is Avonex the reason? Who knows..MS is unpredictable. I could wake up tomorrow and never have another symptom as long as I live..that's just the unpredictable nature of MS.
If you are exploring treatment options, I would suggest researching all four of the CRAB medications and choose the one that works best for your lifestyle and convenience. I chose Avonex because it's a once-a-week injection and suits my needs.
I heard Biogen is developing that for Avonex, but for now I do it the old fashioned way. Believe it or not, though it's not the most pleasant thing to have to do to yourself, you do get used to it.
I think the four major meds being offered for MS right now all operate the same way...they are designed to slow the progression of MS. I've been on Avonex for about a year and a half and my symptoms - when they flare - are not nearly as harsh as "before" Avonex. Is Avonex the reason? Who knows..MS is unpredictable. I could wake up tomorrow and never have another symptom as long as I live..that's just the unpredictable nature of MS.
If you are exploring treatment options, I would suggest researching all four of the CRAB medications and choose the one that works best for your lifestyle and convenience. I chose Avonex because it's a once-a-week injection and suits my needs.
fancycanelady
06-09-2005, 02:45 PM
Hi KelliD!
Thanks for the info. Did you have side effects when you first when on Avonex (like flu-tpye symptoms)? And, if so, did they subside or stop over time?
Fancycanelady
PS Of ALL the "words" that medicines stand for, we MSer's wind up with
CRAB?????? That just cracks me up!
Thanks for the info. Did you have side effects when you first when on Avonex (like flu-tpye symptoms)? And, if so, did they subside or stop over time?
Fancycanelady
PS Of ALL the "words" that medicines stand for, we MSer's wind up with
CRAB?????? That just cracks me up!
KelliD
06-09-2005, 02:55 PM
Hi FancyCaneLady!! When I first started Avonex, my Neuor advised that I may have some side-effects that could dissipate or disappear over time and then return briefly, only to disappear again. The med has been true to the prediction!
It's really not that bad. When I inject, I take a couple of Tylenols or Advils and that really heads off the side-effects at the pass. And even if I DO get full side effects, a second dose of Advil wipes them out.
Sometimes I get tired of injecting and don't want to do it anymore, but deep down, what I am really tired of in those instances is MS itself. I won't ever stop therapy because "doing" something proactive does wonders for my psychology.
What you said about CRAB made me laugh! I had never heard the term until a friend at church asked me whether I was on one of those crab medicines. I was a bit taken aback...having never heard them referred to that way, you can imagine what I thought she meant! ha! ha!
It's really not that bad. When I inject, I take a couple of Tylenols or Advils and that really heads off the side-effects at the pass. And even if I DO get full side effects, a second dose of Advil wipes them out.
Sometimes I get tired of injecting and don't want to do it anymore, but deep down, what I am really tired of in those instances is MS itself. I won't ever stop therapy because "doing" something proactive does wonders for my psychology.
What you said about CRAB made me laugh! I had never heard the term until a friend at church asked me whether I was on one of those crab medicines. I was a bit taken aback...having never heard them referred to that way, you can imagine what I thought she meant! ha! ha!
peony8479
06-09-2005, 03:31 PM
Hello...I was dx'd in Feb 2005 and I started Rebif injections 3x weekly on April 20th. I was VERY worried / anxious about side-effects which are flu-like symptoms / depression. I'm happy to report that I've tolerated the Rebif like a Champ! The 1st few injects at 100% were not fun...woke up with chills, very fatigued and nauseated the next day or two. I take 2 Advil's 30 min prior to my shot and that seems to help. The Auto-Inject is a real easy tool to inject - just load, point and press! I tell my husband that my days as a swimsuit model are over with some injection site reations on my thighs! HA! I use 2 sites - stomach & thigh. Wishing you the best.... :wave:
WOBBLEY
06-09-2005, 06:34 PM
Hi... I too have been taking Rebif since being dx in April. With the exception of the injection site I haven't had any problems (black,blue and red spots) Does it help? Who knows but I do know that I'm better now than I was when I was dx and hopefully Rebif will slow down the progression until they find a cure. I suggest you get on something as quickly as possible. My sweetie gives me my shots but the auto injection sounds conventent, I might go to that eventualy. Good luck to all.
LaDeeDa
06-10-2005, 09:29 AM
Hi Fancy,
Sorry it took so long for you to be dx'd. Seems to be pretty standard procedure!
I'm a little older than you (52), also have been living w/MS for 30+ yrs. Didn't have many issues until abut 6 yrs ago when everything ratcheted up several notches! Seemed like I was having one flare after another there for a while. Got on Copaxone and the flares are now down to a low roar (LOL) and I've not been incapcitated the way I had been.
Copaxone is a daily subcutaneous injection. It does not cause flu-like symptoms the way some of the other meds might for some people. No side effects other than some injection site reactions from time to time. You get used to 'shooting' pretty quickly - like brushing your teeth, it's just part of your daily routine. Both you and your hubby will adapt in no time.
Good luck, keep us posted,
Dee
Sorry it took so long for you to be dx'd. Seems to be pretty standard procedure!
I'm a little older than you (52), also have been living w/MS for 30+ yrs. Didn't have many issues until abut 6 yrs ago when everything ratcheted up several notches! Seemed like I was having one flare after another there for a while. Got on Copaxone and the flares are now down to a low roar (LOL) and I've not been incapcitated the way I had been.
Copaxone is a daily subcutaneous injection. It does not cause flu-like symptoms the way some of the other meds might for some people. No side effects other than some injection site reactions from time to time. You get used to 'shooting' pretty quickly - like brushing your teeth, it's just part of your daily routine. Both you and your hubby will adapt in no time.
Good luck, keep us posted,
Dee
Royal
06-10-2005, 10:36 PM
Hi fancycanelady!
Here are a few of my thoughts on the CRAB medications (mostly Avonex which I am the most familiar).
I am taking Avonex and have been self-injecting this stuff for nine years.
In the nine years I have remained stable with no attacks.
Don't get any side effects at all, except maybe a few minor ones at the beginning. (its been so long now I hardly remember.)
Just prior to atarting Avonex I tried Betaseron but had to quit after just a few doses due to really bad side effects.
Side effects do seem to vary greatly from individual to individual. I know others on one of the other CRAB medications and are doing well on them.
I soon got used to self-injecting and look at it now as little more than a minor inconvience.
I've concluded that when you look at a group of people all of the CRAB medications are about equal in terms of how well they work. For a given person, however, one may work better than another. (I know others will disagree with this.)
Like side effects, dosing frequency and type do vary among the medications.
I still wonder if its helped. After all I still have symptoms from the attacks I previously had and really don't feel any improvement. Of course, thats all its supposed to do, slow down (and hopefully stop) the progression of MS. By the way I am still categorized as relapsing/remitting. I guess I'll just keep on injecting this stuff until something better comes along.
Thats just a few of the main thoughts I have. Hope this has helped and best of luck on your treatment decision
- Roy
Here are a few of my thoughts on the CRAB medications (mostly Avonex which I am the most familiar).
I am taking Avonex and have been self-injecting this stuff for nine years.
In the nine years I have remained stable with no attacks.
Don't get any side effects at all, except maybe a few minor ones at the beginning. (its been so long now I hardly remember.)
Just prior to atarting Avonex I tried Betaseron but had to quit after just a few doses due to really bad side effects.
Side effects do seem to vary greatly from individual to individual. I know others on one of the other CRAB medications and are doing well on them.
I soon got used to self-injecting and look at it now as little more than a minor inconvience.
I've concluded that when you look at a group of people all of the CRAB medications are about equal in terms of how well they work. For a given person, however, one may work better than another. (I know others will disagree with this.)
Like side effects, dosing frequency and type do vary among the medications.
I still wonder if its helped. After all I still have symptoms from the attacks I previously had and really don't feel any improvement. Of course, thats all its supposed to do, slow down (and hopefully stop) the progression of MS. By the way I am still categorized as relapsing/remitting. I guess I'll just keep on injecting this stuff until something better comes along.
Thats just a few of the main thoughts I have. Hope this has helped and best of luck on your treatment decision
- Roy