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Posted 1/20/2009 4:54 AM (GMT 0)
Hi. I'm new to the board and would like to share my story - very brief. I was diagnosed in Aug 03 at the age of 22. My symptoms started out with the numb arm and then it moved to the leg, foot and face. I went to doctor, had test and was dx. I was started on avonex. The numbness went away gradually. I didn't have anonther symtom until Aug 04.  It was 2 months before my wedding so I think stress had something to do with it. Went into hospital for 3 days for IV steriods for Optic Neurtis. This also gradually went away. From 04- June 08 I did not have any major symptoms. In June 08 I had blurred vision again..optic neurtis...IV steriods....gradually went away. In Dec 08 Optic Neurtis...IV steriods...and then all of a sudden I started having muscle spasams. It gradually started only a couple a day and then it progressed to every 5 -10 minutes...I couldn't sleep. I called my doctor and he called me in muscle relaxers....baclofan (sp) and it helped with the sleep and slowed them down. Almost a month later I'm still having them but mainly in the morning as I get out of bed and get ready for work. They seem to be getting worse and I noticed a bruise on the bottom of my foot and I think I may have busted a blood vessel or something because the whole right side of my body will tighten up and the worst pain is in my toes and hand. They only last about 10-20 sec but it's such terrible pain. Does anyone else experience this. I'm in the middle of changing doctors and my appt is on Feb 5 but I still don't know what they will be able to do for me. The muscle relaxers helped at first but now they don't help me sleep or help with the spasams. Any advice?    
Posted 1/20/2009 5:56 AM (GMT 0)
Hey JSparrow

Welcome to the board. There are many here who've dealt with muscle spasms. My best friend is currently using bacflocan as needed and seems to get good results when using it. Some meds do seem to lessen in intensity over time esp if u'r using them regularly. U'r body can adjust to them as i'm sure u'r aware. Try to hang on. Feb 5th isn't that far away. Others will be along soon to give u their input and maybe some advice to help u with that appt soon. Please feel free to keep asking questions and posting. We're really glad u'r here!
Posted 1/20/2009 6:34 PM (GMT 0)
Hi jsparrow and welcome.

I have muscle spasms a lot. Usually when I am trying to sleep. I try to relax but I just don't feel my body doing so. I usually end up with a cramp in my leg that hurts like you know what!

My Wife and Neuro tell me to drink a lot of fluids (water usually) but let me tell you, you can only drink so much water before you start craving something else!

Every day it seems like something else occurs with this darn disease. I also am on bacflocan, 30 mgs/day, but I am not sure if it does me any good. I take so much medication everyday I feel like a walking drug store! I guess getting old has something to do with it also.

Anyway, welcome to our world here at HealingWell and Congratulations on your recent wedding! I Hope everything turns out well for you and your new bride.


 

You are way too young to be tied down with this disease! Good luck and God Bless you! 

We usually have an MS Chat every Monday afternoon so be aware of that. Rhonda, Sunny, and Gretchen usually host it and do a great job.  Hope to see you there sometime. Gretchen usually reminds everyone of the time during the day Monday so keep your eyes open for it.

Posted 1/21/2009 12:45 AM (GMT 0)
i too have horrible cramps ... feels like my toes are trying to cross over each other. on baclofen 10mg 3Xday, but usually just take it as needed. at night also take seroquel for sleep. like so many lovely ms curses, it doesn't attack me every night, but would rather it just go away. LOL! linda
Posted 1/21/2009 12:47 AM (GMT 0)

Hey Jsparrow,

If your spasms are severe enough, you doctor may want to try the baclofen pump.  The baclofen is then put directly into your spine.  We have a member here (popsie) that swears by it.  The might be something to try.  Good luck and let us know what the doc says on the 5th.

Posted 1/21/2009 12:47 AM (GMT 0)

Hey there!!

Muscle spasms, eh? The painful knid, or the annoying kind? I have experienced cramping in my legs--below the knees, to the point that it hurts to even try to flex them away. Lately, one or both of my eyelids has had that annoying little throbbing thingie going on. No pain or irritation though. My MDs said it could be MS-related, but a person is medication-averse, then quinine water (tonic water) acts as a natural muscle relaxant. Hope this helps, and good luck.

Steph57 smilewinkgrin

Posted 1/21/2009 2:30 AM (GMT 0)
Thank you for all the advice. I've never heard of the tonic water or the baclofan pump. The only meds I take is Avonex and Baclafon as needed. I am too young to start taking a bunch of different meds. I was hoping this would eventually go away but I'm not having them as often, only a few a day but they are so much worse than when they started. It's hard to hide it when it sneaks up on me. I was at work last week and had one after walking from my desk to the restroom and had to lean up against the wall to get the pressure of my leg and back. I don't remember if I mentioned but the 5 lesions I had were on the left side of my brain and that's the obvious reason I'm having trouble on the right side of my body. It's not just my feet or hand it's from my arm down to the toes. I had one today adn didn't realize until it was over that my finger nail was digging into my hand making a mark. The remark about your toes wanting to cross each other that's my hand and my toes. If I could sit all day, I think I would be okay but I am a working girl...gotta make that money. I wonder if the cold weather is a trigger? It's been really cold here in Alabama.

I would like to start chatting with you all on Monday. I'm hoping my work schedule will allow me to attend.

Thank you for all the warm welcomes and it really helps to talk to people going through similar situations.

Have a great night.

Jacklin 

Posted 1/21/2009 3:28 AM (GMT 0)

hey Jacklin,

If you want to chat and you can't make Mondays, just name a time or a a few time options and see who wants to join you.  You can do it right here. 

Are evenings better for you? or when?......Just through that out and see what happens.

Posted 1/21/2009 8:08 PM (GMT 0)
Hi. What time do you meet on MOnday's? I will be available anytime after 530 central time. I work from 7-430 M-F.

I had several muscle spasams...one at school (I'm almost finished with my college degree and i also work full time=stress) and 2 driving to work so I decided to go to the doctor and he is requesting a MRI of my spine and he uped my dosage of Baclofan to 20mg 3x a day. I hope this works because it is extremly painful.

I hope you all have a great day.

Posted 1/22/2009 5:18 AM (GMT 0)
Glad to hear your neuro is upping your baclofen. There are other meds and med combos out there, so don't give up hope if this doesn't do the trick.

I believe Monday chat is at 6 pm central time. I hope to see you there :-).
Posted 1/23/2009 9:31 PM (GMT 0)
yeah  I know how you feel I'am also taking Baclofen 120 mg a day. Still get the spazims and boy they can be painfull cry . (Edited)

 

I see that you post here once in a while.  Take a minute to review the rules.

Post Edited By Moderator (Gretchen1) : 1/23/2009 5:20:00 PM (GMT-7)

Posted 1/24/2009 4:17 AM (GMT 0)
Hi Jacklin, So sorry to hear youre having such horrid spasms I know they are soooo excruciating!   I would never have believed that spasticity could be so painful.   I have had them for years & the last 2 years they were just getting   so intense that I did not know how to go on.   Beyond 10/10.   Unfortunately, I am allergic to oral Baclofen but   I have finally got a Baclofen pump and the relief is miraculous.    What I have found, and I expect it is true of oral Baclofen too, is that it seems to be cumulatively more effective although my dose has remained the same.   So for the first time in 14 years I have no pain at all as it seems to work on all the various nerve pains I had, not only the pain caused by spasticity.   The neuro said to me that for the oral Baclofen to be effective I had to take a high dose & do physio.   It seems to be really NB to be as active as you can because what seems to happen is the muscle cramps, causing so much pain you cannot move, the less you move the tighter it gets & the worse the pain gets. If you can, you really need to be stretching/exercising the affected limb(s) when it is not in spasm.   If you can find a physio who knows about MS they should be able to help - MS society will have one or refer you.   It is good to know the pump is there so you do not have to suffer but I would try a high dose of oral Baclofen + physio first.  I found hot showers (running the water down the part in spasm very helpful & yes drinking water helps the nervous system.     I had my first attack at 15 with cramping up at night and waking like you do & poor walking until midday  but then this went away.   I had some sort of attack about every 15 years but the spasms only came back when I was 45 so I have been able to have a full & active life.   So hang in there & if you can get the muscles relaxed I think they will come good & you will be able to dance thru your life like you should.   All the best
Posted 2/1/2009 3:25 AM (GMT 0)
Sorry, I haven't been on in a while. I never thought or read about spasticity until your post, popsie. I looked it up and that sounds like what is going on with me. They seem to be slowing down so I'm hoping they will go away...for good. I know, good luck. I go to the specialist on Thursday so I will let everyone know what's going on.

Have a good evening!
Jacklin
Posted 2/17/2009 3:41 AM (GMT 0)
I'm feeling sooo much better! Praise God!

I've been a little busy with work and school and haven't been on in a while. I had my 1st appt with a MS specialist in Birmingham on Feb 5. For the last 5 years I've seen a local neuro but with the flare up I was having a wanted to see a specialist. While I was there we talked about me wanting to have kids, my husband and I have been trying but it just hasnt worked so she took me off the Avonex and wants me to do a monthly infusion of steroids. I started my first infusion while I was in her office. I was also told I have a new lesion on my spinal cord and this is possibly what was causing the spasams or spacitiy's.  The good news is the last episode I had was on Wed, Feb 4! I don't know if the infusion of steriods helped but whatever it just stopped!

After we left her office I thought about it wonder if she thought we are really trying but we're not we're just not preventing. So I go back on March 13 and I will ask her if I should go back on Avonex and take the steriods once a month but there may have been some confusion.

The baclafon was helping....I think but I was dx 20mg 3x a day. I didn't take it that often because it would make me tired and how do you function at work with your head down? Not very professional. I had been on the baclofan since Dec and I thought if I would take the pill it would make the spasams stop but it didn't. I guess it slowed them down but it seemed like they were getting more intense. I haven't taken the baclofan since Thursday, Feb 5.

I finally feel like I'm back to my old self!

I hope everyone has a great evening!

yeah  

Posted 2/17/2009 8:40 AM (GMT 0)
Jacklin,

Great news that you are feeling better!! I have also heard that being pregnant is really good, and you feel really good because of the hormones running around. Good luck.
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