Re: Long time checking in! :-)/ comment on Jackie's post

[Guest guest]

Welcome back, Jackie!(I cannot resist adding this; your post was rather consoling to me:I have: cystic fibrosis, MS, Osteoarthritis (four joints replaced),Reflex Sympathetic Dystrophy (Ouch!), and diabetes, due to the CF.)I remember your being diagnosed with Dercum's and researching itat the time. One wonders (Well, I wonder. . .) how many of theseare also auto-immune diseases. . . .My internist, neurologist, orthopedist, rheumatologist, all, are killingthemselves trying to determine what is happening with the ligamentsand tendons in my lower legs. . . not exactly simple peripheral neuropathy.You could write a great patient advocacy book, Jackie--and should!Thank you for taking the time and making the effort to bring us up todate on

all that has been and is happening to you.Love to you, Jackie, and: Welcome back home!nTo: MSersLife Sent: Tue, August 31, 2010 11:29:23 PMSubject: Long time checking in! :-)

Hi everyone,.......well my sabbatical is over and I'm ready to rejoin the group again and participate on a regular basis. Its been a long time since I popped in and said "Hi", and to share whats been going on with me. So pull up a chair, get some "coffee", and read on.....lol... :-)

A few years ago I received yet another illness dx called Dercums which is a fat disorder, and then last Oct. I was dx'ed with Diabetes. So all in all, I have MS, Fibromyalgia, Arthritis, Hypothyroidism, Reflex Sympathetic Dystrophy, and the 2, I mentioned above. I am telling you trying to figure out what ones were causing what symptoms were driving me crazy, because they all have overlapping symptoms, so I never knew what was what. So I decided I needed to get in touch with how my body was reacting, and I dropped out of touch with all my groups until I knew how I could relate to each one. Well, I think I finally know now what symptom belongs to which condition.

So I'm back, and I feel like I can contribute a little bit of knowledge about MS, and hopefully help others by saying, yes that sounds like MS. Before I just wasn't sure, ya know?

So let me tell you [i'll try and not make this too long] what symptoms I know are MS for me. Fatigue that is the type that happens when you just can't take another step, and you just have to lay down. A nap revives me enough to continue on. I am now taking 2 a day, whereas before I only had to take 1. And I haven't even increased my activity, and really that has decreased because my walking is so painful I dread each time I have to get up and move at all. I have spasms, and contractions that are very sensitive to sudden movements, and some times it happens one right after another. Mostly up my right foot/leg/thigh and the rest of that side, but my left leg is just starting to have some contractions too. IF I concentrate really hard I can stop it before it goes full blown. I can't in my right side very well anymore. It hurts when it happens and my leg/knee/foot goes into a contortion that pulls the tendons, and ligaments, and then it

takes weeks for everything to heal up.

This is for you Sharon......[well anyone really] but I know I am going into a flare when my eyelid starts to twitch when I am stressed. This is new for me, and its the upper lid and at times it feels like its folding over on itself. Weird, but that to me is the nature of MS. Weird symptoms that no one can explain fully, unless you've actually experienced it. Also I have more contractions when stressed, and even though I take a muscle relaxant I can't take high enough doses to make much of a difference anymore. I can't take high doses anyhow, so maybe a high dose would help. I take opioid pain meds, and have had to increase it slightly lately.

I am thinking a lot about getting my medical marijuana card, because they have it in forms other than smoking that is suppose to be very effective for controlling spasms, and pain. I'd like to get off the chemicals, and see if there's any difference in my symptoms, and if it will help me be more active.

So thats it for this letter, just really an intro and to say Hi, again, and hope to hear from old and new members alike. If there's anything I can help you with, please ask me. :-)

p/s Mitzy I never heard back from you, and I wondered what happened to you? Are you still in Oregon?

Hugs and Love, Jackie [from Oregon]

May the peace of God be with you...the love of Jesus enfold you...and the Spirit of Christ fill you.