Luck ran out

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Luck ran out

Postby viper498 » Sat Feb 17, 2007 4:39 pm

So I almost made it two years since my CIS. For about a week now I've had a mild burning sensation on my skin from the top of my right foot up to about my knee, but it is only on the right side of my right leg. It then also affects my right cheek on my buttocks, and that is it. It is not numb to the touch, I can pinch or scratch and it hurts, but my skin (rather my brain) seems to interpret temprature incorrectly???

Has anyone experienced this? I am sure it is probably a symptom of MS. I knew my luck would run out eventually. I was just hoping I could make it past two years. :( It is somewhat depressing, but I don't think I will sit around and feel sorry for myself. I thought about going to the doctor, but I am sure that would be a waste of time, since I got diagnosed with MS they will immediately attribute this to MS anyway. :(

Brock
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Postby Brainteaser » Sat Feb 17, 2007 5:24 pm

Hi Brock,

I get a similar sensation from time to time. It comes and goes. Exercising and the use of your muscles seems to help.

Regards,
Phil.
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Postby viper498 » Sat Feb 17, 2007 9:50 pm

Phil,

Thank you for the advice..
Brock
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Re: Luck ran out

Postby Lyon » Sat Feb 17, 2007 10:52 pm

viper498 wrote:So I almost made it two years since my CIS.
Hi Brock,
First, I'm sorry about what you're experiencing.

Second, I hadn't previously realized that you fit within the guidelines of CIS.

With multiple lesions but only one exacerbation my wife fits the guidelines of CIS, yet she was diagnosed independently by three different neuros as having multiple sclerosis. None of them ever having mentioned CIS.

From our experience I have gotten the idea that neuros don't diagnose CIS and instead go directly to a diagnosis of MS.

Nothing more than curiousity, but were you actually diagnosed as CIS by a neuro or, like my wife and I, you refer to it as CIS because your situation fits within the guidelines?

Bob
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Re: Luck ran out

Postby NHE » Sun Feb 18, 2007 12:42 am

viper498 wrote:So I almost made it two years since my CIS. For about a week now I've had a mild burning sensation on my skin from the top of my right foot up to about my knee, but it is only on the right side of my right leg. It then also affects my right cheek on my buttocks, and that is it. It is not numb to the touch, I can pinch or scratch and it hurts, but my skin (rather my brain) seems to interpret temprature incorrectly???

Has anyone experienced this? I am sure it is probably a symptom of MS. I knew my luck would run out eventually. I was just hoping I could make it past two years. :( It is somewhat depressing, but I don't think I will sit around and feel sorry for myself. I thought about going to the doctor, but I am sure that would be a waste of time, since I got diagnosed with MS they will immediately attribute this to MS anyway. :(

Brock

Yes, I've had this symptom for about the last 7 years ever since my diagnosis during what I believe was my second attack (the first one 8 years prior was never diagnosed as MS). The medical folks call it neuropathic pain and it's commonly associated with MS though not exclusive to it. My symptoms come and go and sometimes it shows up in different areas however it's been confined to my right leg for the most part. For what it's worth, stress and lack of sleep seem to make it worse for me. There are other causes for neuropathic pain, so if you're concerned about it then it might be something you may want to discuss with your doctor.

NHE
Last edited by NHE on Sun Feb 18, 2007 9:31 pm, edited 1 time in total.
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Postby Toyoterry » Sun Feb 18, 2007 1:15 am

I get symptoms like this everytime the weather gets too hot or too cold. Sometimes it feels like a million small paper cuts on my skin wherever my clothes are too tight or I make contact, especially on my back, when it is aganist a seat. When I sleep, I feel this in the body parts that touch the sheets. It's anoying but so far tolerable. I'm taking Lyrica and maybe that's what makes it so. Hope this helps.
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Re: Luck ran out

Postby CureOrBust » Sun Feb 18, 2007 4:36 am

viper498 wrote:I thought about going to the doctor, but I am sure that would be a waste of time, since I got diagnosed with MS they will immediately attribute this to MS anyway.
If its an attack, they could offer steroids (oral or IV) to ensure the attack stops, and maybe reverse a little quicker.
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Postby Wonderfulworld » Sun Feb 18, 2007 6:28 am

Hi Brock
it can be a real feeling of being let down when you have a relapse, by your own body! I think having had a relapse that paralysed me temorarily on right side, I tend to look on sensory ones as being let off the hook lightly! But that's not to say every new symptom isin't very upsetting and stressful, I do feel that too, very much.

I have had that burning feeling in the past. It usually lasts a very short time for me, a few days at most. The temp wrong thing is permanant on my right side.

To be honest I try to ignore most tingling/pain/burning/itching up to a point as it comes and goes so much. I think it can vary because of tiredness, temperature, fighting off infections, about 6 weeks after infections or very high stress levels. At the moment I have a feeling like bubbles bursting on my legs, tingling, right sides very mild twitching at night, random itching, and I am trying to ignore the annoyance of it. Grrr! :evil:

I once got the burning feeling at the base of my back, down the back of my left leg. I thought, damn and blast, it's moved over to the left side now! It stayed about a week, then I got a rash. Then I realised it wasn't MS this time. It was shingles. It made me laugh that I was so used to ignoring things I hadn't even realised it was a dose of shingles!

Having a CIS - does that mean that the docs don't have you on meds yet? or are they waiting for a while? Will this, as a possible relapse, change that situation for you?

Hope this will pass for you soon, and the feeling goes
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Postby viper498 » Sun Feb 18, 2007 7:55 am

Lyon,

Yeah its me calling it CIS. My neuro diagnosed me with MS. I didn't think that was the right call before, but I may stand corrected. :(

WonderfulWorld,

A CIS is a Clinically Isolated Syndrome. I have only had one symptom of MS ever (perhaps until now). My doctor did diagnose me with MS, and he prescribed Rebif injections. I stopped taking rebif because I don't believe it really helps any. I always said that I may start taking it again if I have a relapse just incase It helps a little. Maybe I will start again..?? I probably need to talk to a neuro about this latest problem so I can get on Steroids like CureOrBust said, just to ameliorate this latest problem, if that is even possible.

NHE,

I have been under a lot of stress, but I also just got this really bad sinus/upper chest infection. I started getting this leg symptom right before that. My jugulargastric lymph node is swollen pretty good. I think I need some ABX bad.

Thanks again to all of you for the input.

Brock
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Postby scoobyjude » Sun Feb 18, 2007 6:31 pm

Brock, so sorry that it wasn't a CIS. I went 21 months till my "2nd attack". I had almost convinced myself that it was a CIS. When I had my original attack which landed me in the hospital for a week my neuro truly did not think it was MS. I on the other hand always kind of knew that it was. I definitely think you should go to your neuro for steroids if you feel that you need them. I'm kind of getting used to all the sensory symptoms like you've mentioned and only ask for steroids if I absolutely need them. As far as the Rebif, I'm kind of torn. I'm on Rebif currently and can't exactly say it's stopped the relapses but I certainly hope it's doing something. It really is a personal decision. Hope you feel better soon.
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Postby viper498 » Sun Feb 18, 2007 8:06 pm

ScoobyJude,

Thanks for the response. How are you doing now? Yeah I will probably go ahead and talk to my Neuro about it. I have a month and a half of Rebif left, but once I finish that I will have to get a new Scrip since I told them (the mail-order pharmacy) they could shove it, whoops. I still don't have faith in it, but I willing to start again if it will buy me time, any time at all.

Thanks again,
Brock
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Postby scoobyjude » Mon Feb 19, 2007 12:37 pm

Brock, I'm doing fine. Currently my only real lasting problems have been occasionally numb finger tips and a stiff right knee. I've had one "relapse" since I've been on Rebif which was pretty mild but there have been many sensory things in between that haven't quite lasted a day. I don't think Rebif is a cure by any means, but my hope is that the Rebif will lessen the severity of any future relapses and maybe reduce the amount. I think the worst thing about the shots is the inconvenience. I know that better treatments will be available soon and I'm just sticking with the program till then. Maybe your neuro can give you some other options. Hang in there, we're all in the same boat :D
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Postby viper498 » Mon Feb 19, 2007 12:57 pm

Thanks Scooby... I appreciate the support. Take care!

Brock
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Postby Lyon » Mon Feb 19, 2007 2:21 pm

viper498 wrote:Lyon,
Yeah its me calling it CIS. My neuro diagnosed me with MS. I didn't think that was the right call before, but I may stand corrected. :(
Brock
Hi Brock,
With CIS it seems that most everyone stands corrected eventually but you know as well as I do that it's basically semantics and CIS is nothing more than a prelude to MS.....but it's nice to hang on to the CIS moniker as long as possible!

Since it's only semantics we get to create our own rules to a certain degree. My wife has had MS "hugs" and some other symptoms which aren't really considered relapses or exacerbations and we still consider her status CIS.

Bugs on your legs?? You're still within CIS land :lol:

Bob
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Postby viper498 » Mon Feb 19, 2007 3:56 pm

Lyon, thats a good point. CIS usually doesn't mean a whole lot. I just felt better because it gave me something to hold on to. I am going to try to not sweat this symptom to much, although I still need to go to the doctor and the neuro and let them know. I'd be curious what an MRI would look like right now?? The last MRI i had showed no activity, and just a little of the original damage. I wonder if I'd have a lot of enhancing lesions, if in fact it is MS that is causing this little problem.

Brock
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