need some help

[Buffy1970]

Hi all. Been away for some time but I'm looking for help once again.

Last year starters to have buzzing/spasms in upper right leg, followed by entire leg, both legs and eventually both arms as well. I have weakness on/off hard to fold laundry or hold a book (even just holding book propped up on belly). Am now having spasms in neck and back.  fatigue seems to be only common denominator.  I have fibrosis but this is spreading and worsening.  Neuro put me on klonopin 2x daily. While I am diagnosed with fm mayo clinic believed more is going on but could not diagnose me. Anyone else have this? Also have various neuro problems but last mri (I could afford) was inconclusive. Local doc just suggested mg BUT I don't have trouble breathing climbing stairs.  I have had girdle spasms in ribs. Spasms/twitches are still not visible but can be felt by others. They start almost as soon as I am active.

Thank you.

[Buffy1970]

Problem is tremor/shakes Real 24-7 only varying in degree and they are wearing me out. My muscles get no rest. Sometimes facial and tongue, too.

At least I'm not trying to answer my asterisk! Sorry loaden, too funny.

[supermum_ms]

lol i shake all day everyday and it gets more pronounced the more active i am, its a bugger but it is what it is lol i'm about to hit the shops so its about to go off the charts. Rofl I need my own warning label - If JJ is in charge of knives or operating heavy machinery - please RUN!

Honestly i'd rather live with the tremor than add more fatigue to my mix, so i do get the issue, not sure if there is much that can help with out that side affect though, hopefully you'll get more feed back on what others found works for them.

Cheers.........JJ

[loden813]

Buffy,
  Sorry to hear about all that's going on in your life.  I actually had several months of "buzzing", usually in my thighs, before I was dxed w/ms.  Got so bad that I reached for my cell phone a dozen times a day...but no call - just my buzzing legs!  Hope yours goes away soon.
  peace
loden

[Buffy1970]

Cheers jj. I sleep on a twin raised air mattress and sort of roll out in the morning. No points for grace I'm afraid.  I looked into mem foam but store owner warned me bad idea. Do u all shake all day? I'm getting pretty selfconcious even though pretty sure not obvious yet.  Meds still only making me sleep. Day 3

[supermum_ms]

I had a water bed for years, seriously dont think i'd be able to get off it now lol though DH could just give the bed a bounce and wallah i'd be up, probably need to be peeled off the ceiling first but still lol

I get a massage nearly everyday, granted its not the same as a therapist or masseuse and i know for sure its not done anything for my tremor, though it feels fantastic so there is a benefit and i'm sooooooo not giving it up lol shhhhhhh if it doesn't help, dont tell anyone, just enjoy it!

Beds can be a hit and miss even when you dont have a special need, pitty bed places dont have a trial before you buy option, it would make life so much easier. My brother did a lot of research into the best option for his issue, and settled on memory foam type but went back to his old water bed within a month because he kept over heating on the new one. All i can say is that i love my bed, its my favourite place and its just a regular mattress, though it is a top brand over here but i really think i was just lucky to get the right one. sorry dont know anything about the gel layer type, i dont think they have them here, yet.

Cheers........JJ  

[Buffy1970]

Limited by insurance... Or lack of. Think I tried syvella but not lyrical.  Main concern is weakness not pain.  Pain bad but you can't push through the weakness.  When your arm(s) drop you can only wait.

Luck with bed. I don't have spouse to think about.  Anyone know about these mattresses with gel layer? Not sure about emissions, though.  I like the low cost/low commitment of airM with current budget.

Can anyone tell me how long it took for messages to help with shakes?  What does it mean if it doesn't help??

Thanks all.

[fortywhat2]

Hi...
I totally understand the sleeping issues with the pressure points, it *****!  Some meds work on some and not on others... I was all the way up to 2700mg of neurontin a day when they changed me to Lyrica... those meds need to be titrated up slowly... I am currently taking 600mg of Lyrica.  Have you asked the Dr if you could try one of the other medications?  Like Savella or Lyrica?  Some meds work on some and not on others.  I also take Celebrex 200mg twice a day and muscle relaxers at bed time.I have been thinking I'd like to try a waterbed, I slept in one for many years in the 70's and 80's and was very comfy but my husbapt in one and he is a very restless sleeper so I don't know how that would work out.

[Buffy1970]

I've tried gaab/neurotic no help. Second day on klonopin still tremors. Hands ceel weak if pull covers up, etc. Just want muscles to give me a break/rest.  Is it mental if med doesn't work?

FYI... I've had some luck sleeping on air mattress.  No pressure points, no hole to get stuck in (foam), and cool. Just be sure u have foam padding so not too cold.

I feel all a-quiver and not even a kiss. Rats!

[fortywhat2]

I also have Fibromylagia along with MS... have you tried Lyrica of Neurontin (gabipenton) or Savilla?  They work very well for Fibro :)  Good Luck!
Debbie
~live as if all your dreams came true~

[HVAC]

I know limbo is an awful place to be. You just want to know what it is. You also want to improve your symptoms. Medical tests are expensive. My MRIs would have cost me over $3,000 out of pocket this year. Most insurance wants the patient to pay a third and I need the series of 3. I can finally get them because I reached my deductable this year and I do not have to pay.

Unfortunately our bodies are all slightly different. Neurological diagnosing is tricky because they can't see our CNS. My diagnosis takes the cake. I went to the Mayo Clinic in 1965 and I was finally diagnosed in 2009. My MS did not act like typical MS. It started when I was two and my symptoms for the most part do not come and go. I get more gradually over time.

Here is a secret you do not necessarily need MRIs to tell where damage to the CNS is. Neurologists can tell with a neurological exam exactly where your damage is if there is damage to the CNS. A doctor told me this. They knew my brain stem was damaged in 1965 and then Doctors saw the same thing my whole life with checking my reflexes, etc.

There are over 800 Neurological disorders and over 30 mimics to MS that are not neurological.

The main thing if you do not have a diagnosis is to treat symptoms. My MS turned out to be one where that is all I do anyway is treat my symptoms. I found a great private pain clinic and they are better than the Neurologist for symptoms. They even treat my Nausea from Chemo and my sweating.

I have all your symptoms so I know they are annoying and the rib spasm are painful. I take Xanaflex for spasms. Unfortunately it is not one size fits all for medications and there is a lot of trial and error. I have been on literally hundreds of meds and we keep tweaking.

Good to hear from you.

Alex