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LollyW

Help! Anyone else have these symptoms?

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Sleepy
Scully

Well, according to the Tv series 'House' ....Hugh Laurie, playing the Neurolgist Dr, House....always used to say " It's never Lupus"...!

 

Over the past couple of years I've had 2 positive Lupus tests....only to be told..." they are probably false Positives"....Doh!

 

Scully.

PS. I used to get called Lolly quite a bit.....we maybe have the same or similar first name !

 

 

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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Nindancer

Also a lover of House MD :witch:

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LollyW

Hi peeps,

 

Hope everyone's ok.

 

Thank you for the messages.

 

I am having such bad aching and pains in my legs and feet. Some days they are fine, other days it's on the verge of unbearable. I can barely walk today and was unable to do the school run this afternoon :-(

 

Just wondered if anyone has found any effective pain relief as nothing I take seems to work. Also has anyone found a walking stick helps with achy painful legs and feet? It's not really a balance problem although the pain can make me wobbly. I'm uncomfortable walking around the office as it's a struggle and people are wondering what's wrong (as am I!).

 

Thanks.

 

Lolly x

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Sleepy
Scully

Hello Lolly,

 

Poor you, I do sympathise. Aching and downright painful legs are the bane of my life too!

Some days I'd have happily had my legs removed they were so very painful with the aching.

I switched from Gabapentin to pregabalin, after I found the Gabapentin wasn't really working. The switch, once I'd gotten by the two weeks of side effects was a revelation and for me personally, keeps the pain under control.

 

I also take baclofen, which is a muscle relaxant and that seems to help also.

 

With regards to a walking cane....I bought fold up ones, tried fixed ones, and finally found a cane from a disability site called OMHU. http://www.prestigewalkingsticks.com/omhu-sports-walking-sticks1.html

 

These are very light as they are made of aluminium, they come in funky colours and are so very light. They aren't cheap by any standards but for me, they were the ones!

Several people have commented on how light they are, and easily cleanable, if you go to the OMHU website, just follow the instructions on measuring, as a wrong height can cause moe problems with posture etc..

 

http://www.prestigewalkingsticks.com/walking-stick-size.html

 

Scully


Edited by Scully

They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Nick

Totally agree with Scully on the importance of getting the right stick(s) and the correct length. My preferred sticks are of the Aluminium type, with moulded handles that fit the palm, these come in right and left versions and are widely used , sometimes referred to as ergonomically designed handles. These range in price but the ones I have now were not too expensive. I found it very difficult to accept that I needed to use walking sticks. I have lost any concerns about that now, just look on it as equipment. I do decorate my own sticks to personalise them, In my case I covered them in rope work! (Turks heads, Scully !)

Pain in the limbs is really difficult. Like others I use Pregabilin and Baclofen. Getting these balances right is a very personal thing and difficult when you are in your position of having no clear diagnosis. A case where having a helpful GP can be useful,

 

Hope that helps

 

Nick

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Just another Warrior...........

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Marc

Can't reiterate enough how important getting the right length of walking stick is. Back at the start, I bought a wooden one from the garden centre. I thought "well, a stick's a stick an this one looks cool,sort of old skool".

 

Within a week, I had incredible pain in my hip and shoulder because the stick was too log (and I'm a short-arse).

 

As for limb pain, like Nick says, it's very difficult and what works well for one person probably won't for someone else. It took a lot of trial and error but I've settled on Baclofen & Tizanidine before bed. My problem is that I wake up with a lot of pain in my legs. I haven't yet worked out how to take tablets before I wake up!

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It's not the hand I wanted to be dealt but I'll play it anyway.

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Skippysprite

Talking of walking sticks and rollators come to that, I am in a powerchair, but when I am out and about I see lots of people using these aids, but at the wrong height, and it makes me cringe for them. I normally mention to hubby and he usually very tactfully offers to adjust them to the correct height, and people are so grateful saying they had no idea.

 

Another good deed done!

 

Pam X

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Live for today.......never have regrets

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LollyW

Thanks so much everyone for the advice. Really appreciate it.

 

I am seeing my GP in the morning so will definitely ask her about Baclofen and if I can take it alongside Gabapentin.

 

Will look into purchasing a walking cane. I am managing as I am but on bad days I really feel like I could do with a walking aid. Just hard to accept when you haven't even had a diagnosis I guess.

 

I've requested to see my Neurologist at the end of next month for all my test results. It's gonna feel like a long few weeks.

 

Thanks again :-)

 

Lolly x

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LollyW

Hi,

 

I have seen my GP and been prescribed Baclofen to try. I mentioned the forum and that it had been recommended for leg pain and she is hopeful it will help, as am I. She did ask if it's spasms causing the pain in my legs but I explained to her I'm not sure and it's like severe aching and I find some relief in flexing my feet. Strange huh. So I'm not sure if the Baclofen will work if I'm not experiencing muscle spasms but I'm certainly willing to try.

 

My Neurologist's secretary is on holiday and I've been advised there are no appointments available in the near future (great). God knows how long I'm going to be waiting before I get my results. I've also been signed off work for 4 weeks due to decreased mobility and tiredness. Time for some rest.

 

I find on bad days, when I'm resting with my feet up, I have constant twitching of my nerves in different places, especially my feet. I might have nerves twitching in my feet, then randomly in my leg, tummy, arm etc all at separate times. The twitches are short and pain free. Just wondered if anyone else gets this?

 

Thanks.

 

Lolly x

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LollyW

Sorry, another question...

 

Has anyone had bad side effects taking Baclofen? I've been advised to start with 5mg three times a day. She did say it can be increased if need be but didn't say when or how. I currently take 1800mg Gabapentin a day.

 

Thanks.

 

Lolly x

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Marc

Been taking Baclofen for over 10 years, can't say I've noticed any side effects. Everyone is different though so there are no guarantees. Maximum prescription is 100mg per day so you shouldn't really experience any issues on your dosage.


It's not the hand I wanted to be dealt but I'll play it anyway.

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LollyW

Thanks Marc, fingers crossed!

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Sluggish
Marina

I've also been on Baclofen for over 10 years. They usually start people off on 5mg x 3 times a day and then increase it to 10mg x 3 times a day. The 30mg a day dosage is quite common although some people need more.

 

Baclofen is one of the few meds I don't get any side-effects from, although I felt light-headed and sort of floaty on the first day I took them. In much higher doses, it can make legs turn to jelly but it does have to be much higher doses; this is because Baclofen is a muscle-relaxant so very high doses can over-relax the muscles. I've taken as much as 60mg in a day and haven't felt any different but, as Marc says, everyone is different. I think the most common possible side-effect is that it might make people feel a bit more tired or fatigued.


Marina

(belated DX in June '05, SPMS)

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Nindancer

I was on baclofen starting at 5mg x 3 an upped to 10mg x 3 times once I was used to it.

When was on a rial last year I had to come off all spasticity & painkilling meds and the Dr suggested by the end of it that I should increase my gabapentin to 4 doses a day so I now take 10mg baclofen x 4 times a day alongside it.

I hope it helps you though

Sonia x

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LollyW

That's for the info guys, much appreciated.

 

I'm gonna start them in the morning. Do they take long to kick in?

 

Lolly x

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LollyW

Pardon the pun :-)

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LollyW

Hi all,

 

Quick update. Just had a call from my Neurologist's secretary. I've got an appointment next week! They had a cancellation, luckily for me, so have offered me the appointment. I asked her if all my results are in and she said as far as she knows they are.

 

Anxious isn't the word. As much as I'm desperate to know what's wrong, now I know I'm seeing my Neurologist next week I feel really uneasy. Maybe I won't get a diagnosis, maybe I will. Not long til I find out. Was expecting to be waiting weeks for this appointment.

 

I'm glad really as the base of my spine, legs and feet have been dreadful the last few days. I had 8 days completely symptom free then my legs started playing up again. The Baclofen isn't working yet. Not sure how long it takes for those to kick in? The achy pain and internal itch sensation runs from my lower back right through my buttocks all the way down both legs to the tips of my toes. It's horrible. Sounds like the sciatic nerve but my symptoms aren't typical of sciatica. Strange.

 

Oh well, it's answers I'm after so hopefully I'll know more next week!

 

Hope you're all ok. I've got butterflies and not in a nice way :-(

 

Lolly x

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LollyW

I've also got mild pins and needles and slight numbness in my toes on my left foot. New symptom.

 

Lolly x

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Nick

Well it's good news really, better sooner than later to get a better idea of what's wrong. Have you got your list ready yet? All the symptoms and all the concerns, that is. Don't expect too much, these things can be complicated, and at the same time do keep positive. I think you seem to be a positive type of person!

 

Best of luck with it all

 

Nick

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Just another Warrior...........

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Nindancer

I was gonna mention a list too!

Good luck

Sonia x

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LollyW

Thanks Nick, I do try to be positive. Tricky sometimes but it is what it is.

 

Thanks Sonia. Need to get my list ready as I know my mind will go blank when I'm in there. I'm gearing myself up to not get a formal diagnosis so if that's the case that's ok. Patience isn't my strong point when it comes to health and wanting answers but I'm hopeful I will find a bit more out.

 

Thanks guys.

 

Lolly x

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LollyW

Quick question for those taking Baclofen, is it safe to indulge on a glass of wine or two from time to time?

 

My current meds are 1800mg Gabapentin and 30mg Baclofen each day.

 

Thanks.

 

Lolly x

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Marc

I take 60g of Baclofen every day, it's never stopped me having the odd glass (or two) of wine. Can't say I've noticed any adverse effects either but everyone's different.


It's not the hand I wanted to be dealt but I'll play it anyway.

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Nick

Same here, I don't think MS and alcohol go too well together but I have no trouble with a glass or two. Its all a question of what suits you.

 

Nick


Just another Warrior...........

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Sluggish
Marina

I have a glass of wine or two often enough and don't find it interacts with Baclofen.

 

However, I don't seem to have the same tolerance for alcohol as I used to; after more than two or three glasses of wine, I now tend to feel either a touch tipsy or I get a headache, when before that I could drink a bottle of wine and have a vodka or two as well without problem. This started abround the time I had a big flare up of old and new symptoms just before my DX, so I figure it's either just another MS thing or it's due to one of the meds I take and Baclofen is the only one I've been taking for that long.


Edited by Marina

Marina

(belated DX in June '05, SPMS)

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