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jgsm
Posts: 16
Hi, y'all!
I'm so glad to see a MS support group on here. I've technically been a member of mfp for over a year, but just always used the logging tools on my mobile phone. It's just been since the first of this year that I've gotten involved with the community, forums, friends, etc- and I'm really enjoying it and hoping it helps a bit. I'd like to lose about 30 lbs and be (consistently) more physically active.
A little about me: I'm a 37 yr old mother of three (16, 14, 12), stay-at-home mom and wife. I was finally diagnosed with MS soon after my 30th birthday after years of odd, vague, seemingly unrelated symptoms and complaints. Numbness and spasticity, all sorts of gait difficulties, vertigo, lots of cognitive issues, and just generally really weird sensations. There is a history of just about every other auto-immune disease in my family except MS, so for years I was tested and retested for every thing else under the sun all with negative results. Talk about frustration and just about convincing myself that I was either really crazy or somehow manifesting psychosomatic symptoms for some odd reason. That self doubt just about pushed me over the edge...
Then in the summer of 04, I read an article about lyme's disease and insisted on being tested- some of the points seemed to match up. I saw a nurse practitioner who was new to the practice and hadn't yet listened to my litany of complaints before or already dismissed me. In between the blood work and the follow up visit, I went away on a beach vacation. It just about killed me. When I went back for the results (they were of course negative), I describe to the np how awful I had felt out in the sun. Every symptom I'd ever experienced seem to come back full force- shooting electrical tingling up and down my legs, constant fatigue, really could barely move. And of course, I didn't know any better, so I'd go from a beach chair in the sand and glaring sun to the hot tub- hoping to find someplace to relax. This was the lightbulb moment for the np which she recognized as Uhthoff's phenomena , and within weeks I'd undergone my first mri and spinal and finally a dx.
In the years since, I've definitely struggled and just about every time I think I've gotten a handle on the MS, I seem to get my legs kicked out from underneath me. The numbness and tingling never completely go away; they just vary in intensity. The fatigue is often debilitating- and so hard to describe to someone who's never experienced it first hand. There are days that performing a simple household task has me in tears because the effort required is almost more than I have to spare. Even with medication, my legs cramp and seize up at night during sleep- which certainly doesn't help the fatigue issues. I'm rarely without at least one other symptom playing havoc with me. The worst is the pain- I'm (un)lucky enough to have an atypical case of trigeminal neuralgia that rarely goes completely away. It varies from a mild bruised feeling in my cheek, to severe toothache like pain, to my head in a vice while being simultaneously beaten with a baseball bat and stabbed with an icepick feeling. Not fun.
Despite the tone of this post (wow, getting it all out there), I try not to complain a lot. I've got a great support team, fabulous husband and kids that are my rocks and are so, so helpful. I go through cycles in my relationship with this disease- sometimes I'm in a state of denial and force and push myself through (always with consequences), sometimes I give in and want to blame everything on the MS- even when I know better.
Anyway, (if you're still around reading this, long enough?) that's me in a nut shell. I'd love for some friends on here that also understand the trials and challenges of MS, so please feel free to add me!
JG
I'm so glad to see a MS support group on here. I've technically been a member of mfp for over a year, but just always used the logging tools on my mobile phone. It's just been since the first of this year that I've gotten involved with the community, forums, friends, etc- and I'm really enjoying it and hoping it helps a bit. I'd like to lose about 30 lbs and be (consistently) more physically active.
A little about me: I'm a 37 yr old mother of three (16, 14, 12), stay-at-home mom and wife. I was finally diagnosed with MS soon after my 30th birthday after years of odd, vague, seemingly unrelated symptoms and complaints. Numbness and spasticity, all sorts of gait difficulties, vertigo, lots of cognitive issues, and just generally really weird sensations. There is a history of just about every other auto-immune disease in my family except MS, so for years I was tested and retested for every thing else under the sun all with negative results. Talk about frustration and just about convincing myself that I was either really crazy or somehow manifesting psychosomatic symptoms for some odd reason. That self doubt just about pushed me over the edge...
Then in the summer of 04, I read an article about lyme's disease and insisted on being tested- some of the points seemed to match up. I saw a nurse practitioner who was new to the practice and hadn't yet listened to my litany of complaints before or already dismissed me. In between the blood work and the follow up visit, I went away on a beach vacation. It just about killed me. When I went back for the results (they were of course negative), I describe to the np how awful I had felt out in the sun. Every symptom I'd ever experienced seem to come back full force- shooting electrical tingling up and down my legs, constant fatigue, really could barely move. And of course, I didn't know any better, so I'd go from a beach chair in the sand and glaring sun to the hot tub- hoping to find someplace to relax. This was the lightbulb moment for the np which she recognized as Uhthoff's phenomena , and within weeks I'd undergone my first mri and spinal and finally a dx.
In the years since, I've definitely struggled and just about every time I think I've gotten a handle on the MS, I seem to get my legs kicked out from underneath me. The numbness and tingling never completely go away; they just vary in intensity. The fatigue is often debilitating- and so hard to describe to someone who's never experienced it first hand. There are days that performing a simple household task has me in tears because the effort required is almost more than I have to spare. Even with medication, my legs cramp and seize up at night during sleep- which certainly doesn't help the fatigue issues. I'm rarely without at least one other symptom playing havoc with me. The worst is the pain- I'm (un)lucky enough to have an atypical case of trigeminal neuralgia that rarely goes completely away. It varies from a mild bruised feeling in my cheek, to severe toothache like pain, to my head in a vice while being simultaneously beaten with a baseball bat and stabbed with an icepick feeling. Not fun.
Despite the tone of this post (wow, getting it all out there), I try not to complain a lot. I've got a great support team, fabulous husband and kids that are my rocks and are so, so helpful. I go through cycles in my relationship with this disease- sometimes I'm in a state of denial and force and push myself through (always with consequences), sometimes I give in and want to blame everything on the MS- even when I know better.
Anyway, (if you're still around reading this, long enough?) that's me in a nut shell. I'd love for some friends on here that also understand the trials and challenges of MS, so please feel free to add me!
JG
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Replies
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Hi JG, nice to meet you! Wow that's some story. I also learned something new (Uhtoff's)--I knew about it and experienced it but didn't know it had a name to it! You sound like you have a really positive attitude despite going through a lot and that's one of the best things you can do for yourself. My story is in one of these posts but I'm realizing I have it a lot easier than a lot of people, luckily, and for now. It makes me really appreciate things, and when I don't feel like exercising or eating right, I think about one day, if I can't, how I'll be mad at not taking the opportunity when I had it. Anyway welcome and I'll add you as a friend! Christina0
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Welcome to the group. I am new here too (only 5 days along), but i have been welcomed greatly and already feel the outpour of support this group provides. I will gladly add you as a friend.0
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Having support makes all the difference in the world. Especially when it's support from those that have been through the very same things! I always find myself so thankful for the husband, children, family and friends that I have, however I have always wanted to have people in my life that are going through some of the very same issues that I am.
This disease is something that most people cannot understand fully unless they've gone through it themselves. I applaud you for your strength and look forward to getting to know you better
Welcome to the group! 0 -
Welcome JG, it is nice to have people who actually understand that you aren't just tired or lazy when you can't get things done. Surrounding yourself with supportive people makes all the difference.
Bea 0
