Leg Problems--Still

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Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/26/2008 8:38 AM (GMT -7)   
Hey everyone!

Just checking in an looking for a little advice, if any of you remember I was in the Hospital a few weeks ago for leg spasms and bad cramps, followed by loss of feeling.
Well my problem is that I was on Methoprednisone and oral prednisone to taper off, but I still am having leg problems, my right leg is really tight and sore around my hamstring area, also I feel extremely weak on that side, including my arms. Its really weird cause I have Optic Neuritis in my right eye, it seems like a had a small stroke or something?.
Well as I said in a previous thread, my doc was considering changing my medication, I talked to his nurse yesterday and she's talking it over with him this morning. This is very scary for me because I have been on Betaseron now for 9 months and if it's not doing anything than what a waste of time...
I'm confused, depressed and very tired.. Hope something good happens soon.... Talk to you guys later.
-Tertle


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/26/2008 9:16 AM (GMT -7)   
Tertle said...
Hey everyone!

Just checking in an looking for a little advice, if any of you remember I was in the Hospital a few weeks ago for leg spasms and bad cramps, followed by loss of feeling.
Well my problem is that I was on Methoprednisone and oral prednisone to taper off, but I still am having leg problems, my right leg is really tight and sore around my hamstring area, also I feel extremely weak on that side, including my arms. Its really weird cause I have Optic Neuritis in my right eye, it seems like a had a small stroke or something?.
Well as I said in a previous thread, my doc was considering changing my medication, I talked to his nurse yesterday and she's talking it over with him this morning. This is very scary for me because I have been on Betaseron now for 9 months and if it's not doing anything than what a waste of time...
I'm confused, depressed and very tired.. Hope something good happens soon.... Talk to you guys later.

I'm sorry you're having such a hard time.  Are you expecting your leg problems to go away?  It's not likely they will, I'm sorry to say.  Your nervous system has suffered damage -- the myelin is destroyed or "broken", and the loss is causing the problems in your legs. 
 
Betaseron, of course, isn't supposed to "fix" any of the symptoms that MS brings. It only is supposed to reduce the number and intensity of flares that you might experience.  Whether it is "doing anything" or not isn't easy to determine: you could have had more serious flares, or more flares had you not been on it. Maybe.  But if you're thinking that your leg problems would go away *because of the Betaseron*, I'm sorry to tell you that wouldn't happen. 
 
Some people do better on one drug than another.  Usually doctors like to wait for 9 months to a year to see whether their patients seems to be having fewer exacerbations than expected, before thinking about whether to change meds. Apparently that is what is happening with your doctor.
 
Chronic disease by its very nature means that you'll likely never be completely free of symptoms, whether it be weakness on one side, or spasticity, or bladder issues, or vision issues, or any of the other symptoms that MS can cause.  I'm sorry.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/26/2008 10:53 AM (GMT -7)   
I totally understand Uppity, It's something I'm going to have to face I guess, that won't be easy. I'm taking Zanaflex to control my leg issue, it seems to work most of the time.

I'm pretty sure my doc is going to switch then, I have been in the hospital twice in the past 4 months, so obviously the Betaseron is not doing what it's supposed to. Thanks for your input.
-Tertle


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 2/26/2008 5:06 PM (GMT -7)   
Hey Tertle,
Sorry to hear your not doing so well lately. I have leg issues too, so i can relate to your frustration. I find after a flair up (and always), that the only thing that helps get back some strength and reduce spasticity is exercise and stretching. Can your doc send you to Physical Therapy? They can show you how to stregthen and stretch properly? Just a suggestion. I have been on Rebif for the past year and have had 3 flairs. I am in the process of getting approval to start Tysabri. I feel your pain Tertle. I am in the same boat. Hang in there, OK.
Take care
Lynn


Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/26/2008 5:44 PM (GMT -7)   
Thanks Lynn,
I am actually going to a Physical Therapist, He showed me how to do the right stretches and how to work on my balance, I'm hoping this will help..
I got the call back today from the nurse, my doc is stopping my Zanaflex and put me on Gabapentin starting today, has anyone heard or on this??
-Tertle


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/26/2008 9:53 PM (GMT -7)   
Yes, i've heard of it. It is Neurontin, (same thing) and is very good at helping ease neurolical pain. Easing up symtpoms directly affecting the nerve endings and routes of neuropathic sensations.
 
I'm surprised however, that your doctor isn't considering baclofen for the spasticity. I do understand that the med tizanadine that your on, seems to be helping but if he were trying for more "control" or less "spasticity" he could up the T , or switch to Bac. The neurontin will help with sensations more, and does not have any correlation with spasticity that i know of other than some "feelings".
 
I believe id ask him im he felt baclofen would help your dilema.
 
Alot of meds don't help some. I'm not sure its the meds themselves or our bodies were just prone to have some major things going on. What your describing i went through at home. I just did it for 4 days and eventually things eased out..........well alot of it did. i'm really not used to going to the hospital unless the vision is there, but as ive said before, in hindsight i should have on that attack. Mine was all over, even in neck muscles and arms.
 
Baclofen got me through it and i dont feel any residual of it. But from what i can tell about my body is "if its showed it to me once, it'll be back"
 
I edited this as I re-read ms uppities reply and when thought of in a different light it made total sense. Typing always leaves out the human factor unfortunately. I can tell you that my right leg will always have problems when bent (hard to straighten it) and during flares and just in case i forget MS it'll twist my ankles a few times and knot up under the skin to the look. During a flare it will activate that all again and then afterward leave me sore like i could find visible bruises but there are none. I do agree that it may not go away or even get better in some but it just really depends on alot of things, The amount of damage, your body and the amount that is totally broken or toyed with for now. I've had some things broken but others just involved during the flares. I dont know if they consider your attack totally over or not.....
sometimes they can last past the duration of hospital stay and steroids.
It is very much like alot of small strokes i was told by a neuro, the attacks being our strokes and the body's attempt to heal that of the same.
residual happens with both.
 
Since this is an exac, it will be left to see what remains residual over time.
(rephrasing this to say Since this might not be the "end" of this excac)
I've known some to be on interfurons then switch after 5 yrs to copaxone and do great. I have no idea why? Just different strokes for different folks i guess.
 
It's kind of a scary thing when we have the eye jazz going on with blurry stuff to wonder about strokes. I do show a small tia on my scan but they never seem bothered by that. (tho i am!)
They did explain (woman neuro at a clinic) that she had went into her field because of how interesting it is...and how Ms is like alot of small strokes. (not interesting for the wearer of the blows for sure!)
 
I do hope your legs improve a little as time goes bye if they dont altogether...until next God forbid Relapse.
As far as being on Betaseron, it is the strongest of the other options. I really dont wish to debate it or anything with anyone but...out of what theyve tried its one of the more potent and higher doses.
That however doesnt mean that your particular body wouldn't respond to another one better.  Meds like Ms uppity has said before are a strange thing! to be sure!
What works in one, wont in another and so on....
 
 
thinking of you
 
 
kiera
 
 
 
Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 2/27/2008 1:09:07 PM (GMT-7)


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 2/26/2008 9:59 PM (GMT -7)   
Hey Tertle,
I'm glad your going to PT. Just keep at it. I tend to be a BIG slacker, lol. I have to really push myself, but it does help. The Gabapentin is the Generic Neurontin. It helps with the nerve pain. I was on it and it worked great, but i started to get allergic and had to stop. I was so mad, cuz it helped alot for me. Well good luck, i hope it works well for you. Take Care! You'll be fine, it takes awhile to bounce back sometimes, keep at it!
Peace,
Lynn
Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/26/2008 10:02 PM (GMT -7)   
The human body is very resiliant...so remember that as lynn says. sometimes it takes awhile to bounce back. Those areas will probably give you probs in the future but that doesnt necessarily mean that where your at in exac is where you stay once its over.


again in my thoughts

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/27/2008 7:23 AM (GMT -7)   
Thank you guys for the encouragement, I really need it and you guys here really help. I guess I am afraid that my leg is going to stay this way, and that's probably why I feel depressed. Your input will help me with this I'm sure..

My doc was mentioning switching to Baclofen, the last time I saw him. I don't know where he got pulled this new medication from.. I do hope it works.

? for you Lynn, what kind of side effects did you experience from the Gabapentin? Doc just told me about the tiredness and drowsiness, and that it should go away in short time.

Talk to everyone soon.
-Tertle


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/27/2008 7:24 AM (GMT -7)   
One more thing Lynn, I took my first one last night and had some really crazy dreams..You too??
-Tertle


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3547
   Posted 2/27/2008 7:33 AM (GMT -7)   
Hey Tertle,
 
For me, this is a disease of adjustment.  It takes from you, then you get real depressed, then you learn to deal with new limits and abilities, then you feel better because you have adjusted.  The really hard part is that "learning to deal with new limits" part.  Once you are there, then you can get on with life.  But the problem with MS is that it can come right back at you with new changes.  Just do the best you can.  If you are feeling depressed, talk to your doctor, take really good care of yourself, get support from family and friends and know that most of the time it goes away as you learn to adjust.  That has been how it is for me.  I have had some rough times, we all have, but I crawl back out the the hole and eventually feel better. 
 
Hang in there and remember that you will feel better even if your leg stays weak/bad/spastic etc.  Lean on us.  We have all been there.  It can be really hard.  Just be patient. 
 
Love and prayers,
Gretchen       co-moderator MS board       diagnosed with MS July 2006


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/27/2008 7:42 AM (GMT -7)   
Thanks Gretchen, I will Lean on everyone here. It helps alot to be able to talk with people that are going through the same thing.. I have to get the "dealing with new limits" part down, that will take some work.. Getting around the house isn't as easy as it once was.
-Tertle


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/27/2008 9:10 AM (GMT -7)   
The nightmares could come from either the medication as alot of medicines can do that or just your being in the environment that your in, under the condition's your in.


Gab or Neurontin is a great med. For neuropathic pain. It's def one that has been very helpful for many people and I can see the doctor using it for pain or odd sensations (buzzing/burning/itching/jabs), the others tizanadine and baclofen are usually front liner's for spasticity to your degree. Although there are some others also out there, depends on what your doctor feels is best. Even botox can be used in some with a good degree of success.

None of us can tell you if when your exac is over (we cant even say it is or isnt), if you'll get part of, all of, or none of that leg back. Chances are that it wont be as bad as when in the severity of attack but more of a residual problem. There are no guarantee's that is for sure.

As Grethen stated so well it's a matter of continuing to readust. What can be terrifying at the beginning can become (as you adjust and time mends the head/heart thing)...that you will not feel so scared of the sensations which in itself can lesson a bit of the discomfort. I truly hope that this was more of an enhanced thing from the flare and will leave only slight residual if any.

We only know what we each go through. I know like i said in previous post. Once it show's me something once, it's not done in that area. I guess in some cases its causing damage/repairing to a degree but will come back. Its been how its been with me. Small residuals reminders daily of where it had been worse at.

I hope that either way you will realize that you are more than your leg or any one part of your body. You are valuable and worth much in this life. Your life has a major purpose and really weve always known it wasnt about looks etc, but with Ms we really get a taste of the realness of that.

Either way im glad your being attended to inpatient and these things are being addressed. Please let us know what they feel is the better treatment for you in the end?..and what you find helpful. We are here for you!!!!!


thanks

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/27/2008 1:21 PM (GMT -7)   
Ok im cognitively challenged. Your now home?

Question? Did the give you anything for walking assistance? Cane? Walker?

Please do keep the stretches up, if it gets to where its harder to get to Pt, they do have pamphlets so you can do these at home as well.

I'm getting to stay in so much , its getting to me this winter!

I did get to shoot a gun for target practive this weekend with my husband and his brother. they laughed at how i shook, and how i had to drop my arms between each shot (9mm) ..they of course could handle the shots alot better but guess what? I beat them both! They were making fun of how much my arms shook saying will she hit a tree? No, but i did land it in the bullseye 3 times!

So,,,keep on adjusting!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/27/2008 3:50 PM (GMT -7)   
Hi Kiera,

I am at home, and the PT at the hospital gave me a walker. I haven't used it yet, I'm just walking very slow. I think it's because I don't want people looking at me with it.. just because I'm not "that" disabled. I do have a handicap parking thing now. That comes in handy.

I bet I would be the same shooting, its been like 10 years since I've shot a gun, I know my arms would be shaking.

Anyways good job hitting the bullseye.. Talk to you later.
-Tertle


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 2/27/2008 5:12 PM (GMT -7)   
Hey tertle,
You made me laugh when you said about the dreams. Thats a good thing or bad?, LOL. No i did not have dreams that i could remember. I started to get really, really itchy. Then i broke out in red raised welts all over. It wasnt pleasant. But other than that, nothing. I wasn't tired from it. Then i was put on Lyrica. The same thing happened with that. My neuro said that it probably would happen again with it,because neurontin and Lyrica have the same type of chemical makeup. Just a little tidbit for you. Yeah, so then he gave me Cymbalta, and its working great for me. It is an anti depressant but they also prescribe it for patients with nerve pain. So i get a 2-fer. I feel awesome on it. I hope you have luck with the neurontin. Like i said in my other post, it was working great for me. Good Luck!
Lynn
Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/27/2008 9:38 PM (GMT -7)   
Hmmm lyrica made my ankles swell horribly and thats never happened on neurontin..quick call to pharmacist said yep its the lyrica, same when i saw my family doc.

Isn't lyrica made by the same company but was supposed to do so many other things? I recall looking it up and it helped headached (it said)....worked as well as xanax for panic, claimed all kinds of things. I do know it has neurontins ability but i think its a bit enhanced isn't it? With other things.

Either way, always keep a close watch on those med indications and if anything pops up , you can always get ahold of a pharmicist or 24 nurse with alot of insurances...until morning time for your doctor.

I hope the vivid dreams stop...alot of stress could just be making those pop up too!

wow lynn sorry that you got the whole hive thing...and yeah id be mad too, but im glad that cymbalta is a double worker for you!

thanks
kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/28/2008 6:51 AM (GMT -7)   
I think the dreams are from stress, last night I had a dream that I got sucked up in a tornado, I've read that this is a stress related dream, I have also had dreams about losing my teeth recently also.. same thing, stress.

One question, My doc called yesterday and said that he thinks I should switch to Copaxone, He is leaving the desicion up to me though. What do you guys think? I'm torn on what to do.

I personally don't think the Betaseron is working like it should!
-Tertle


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/28/2008 7:03 AM (GMT -7)   
Tertle said...
I think the dreams are from stress, last night I had a dream that I got sucked up in a tornado, I've read that this is a stress related dream, I have also had dreams about losing my teeth recently also.. same thing, stress.

One question, My doc called yesterday and said that he thinks I should switch to Copaxone, He is leaving the desicion up to me though. What do you guys think? I'm torn on what to do.

I personally don't think the Betaseron is working like it should!

If your doctor thinks you should switch to Copaxone...and you don't think the Betaseron is working like it should...then why NOT switch?
 
(I do think you should reconsider using the walker.  If the PT recommended it, you probably do need it. And while you're being careful walking...if your legs are like mine were..they can "give out" under you without warning, even when you're being careful...Not a good thing.)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3547
   Posted 2/28/2008 7:13 AM (GMT -7)   

Hey Tertle,

If you don't think the betaseron is working then you owe it to yourself to try something new.  For many, copaxone is a wonderful drug.  Just remember, none of these drugs is going to make you feel better (they do not manage symptoms).  They are only designed to slow down progression and they work very, very slowly.  It will take at least a year for you to know if the copaxone it working.  You may flare several times in that year.  I had a a huge flare seven months into copaxone and it scared me badly. I was left with a lot of residuals and I was really rattled for a long time.  It was hard hard work mentally and physically to come back from that one. 

I am now approaching a year since that flare and I am feeling better than ever as far as progression goes.  I have none since that flare.  My doctor and I feel that the copaxone is NOW doing what it is supposed to do.  That does NOT mean that I think I will be flare free from now on.  It does seem like things are progressing slower though.  I had three flares in ten months.  Now I have gone almost a year. 

So anyway, hang in there and just know that the drugs all work slowly.  For many, copaxone is a good one.  It usually has very few side effects - no flu like symptoms at all.  Some are allergic though and cannot tolerate it.  Make sure you know about IPIR as that can be a bit scary and uncomfortable as well with copaxone. 

Good luck with whatever you decide.  Keep us posted.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/28/2008 9:12 AM (GMT -7)   
Tertle,

I think that the time thing is the biggest factor in making a decision like this. I'm with the other's as far as why not?
copaxone is well tolerated, alot less symptoms or side effects. It has done wonders for some that interfuon's did not (and vice versa!) again, meds ARE diff for every person! Thats a hopeful thing though really, it allows you the option of changing.

Whether it helped delay some or not, will never really be known as uppity told you in previous post. I've wondered about switching to beta but...in truth i need more time on the copaxone as Gretchen has had to "know"

Since your doctor is suggesting it, i think its a perfectly good option for you. The injections are meant to cause less flares and less severity and slow progression but they do not take 1 symptom that you have away. Nor do they cure MS. You do have MS so that is there no matter which injection. We are in a good time of having medicines that can delay or prevent more attacks. (sometimes i know it doesnt feel like it, but imagine before they had them?).

I also totally agree with ms. uppity about the walker.IF your having to walk carefully , thats a clear sign you need to use it until you know how it is going to be after everything has calmed down some for you. Its not about being "that" disabled, its about "preventing a fall" or a "break of your hip or other bones"......pls dont chance it and maybe add a huge break to your body? You can always tuck it away on better days or if this subsides or is controllable with meds. For now? you really should use it.


I hope that you dont fret too hardly on changing meds. There are alot of good success stories on all of them. Copaxone (telling you an upliftng part of it)..is sub q so you just pinch part of your tummy and inject, you do not mix it. It come's ready and refrigerated. You simply inject and dispose. It can feel like a bee sting for a few seconds. They will exlain the side effects, most are brief and within the first 15 -30 min of the shot then no flu feelng at all:)
with all injections keeping a watch on those sites are a must!

I hope that you allow your doctor to guide you also as he seem's to be doing a good job. He did consider alot during this including the walker/pt/new meds. So I'd kind of lean on what he thinks as well.


Hope your day today gets better than yesterday and your nighttime tonight is void of all dreams, may you sleep like a baby!

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/28/2008 1:56 PM (GMT -7)   
Thanks Kiera me too. No tornadoes or wheelchairs tonight---please!!!!

I also think that I'm going to make the switch to Copaxone, I like that it is already pre-mixed. I will let you know my final desicion on this soon.

I was just wondering, if I switch doesn't take a while for it to fully get into my system?
-Tertle


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3547
   Posted 2/28/2008 5:14 PM (GMT -7)   

I was told that copaxone takes 6 months to be considered full strength in your body.  Even at full strength, it may take a year or more for it to start working.  It is a long slow process. 

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


1mom
Regular Member


Date Joined Feb 2008
Total Posts : 69
   Posted 2/28/2008 6:11 PM (GMT -7)   
My son was on Rebif, had a bad relaspe,they switched him to Copaxone..they made him do both Rebif 3x week..and Copaxone everyday for the the 6 month peroid.To be sure he was "covered".Doing well with Copaxone,( 1 year) it has healed old leisions that were hanging around with the Rebif for 2 years ( in active) but were still there..That last MRI he had -showed the Copaxone has done wonders..They called remarkable healing.!!!!!!Just sharing my thoughts!!!! still suffers with residual effects from the relaspe..but the C worked better than the R.
its not how hard you get hit,its how hard you get hit,and keep moving forward, that how winning is done. 
                                        Sincerely,1MOM


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/29/2008 10:30 AM (GMT -7)   
Do you guys think I should switch??
-Tertle

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