Stacy MS story
Last updated: March 2020
I was diagnosed in October 2009 after a brain MRI showed lesions and a spinal showed signs as well. My symptoms that time started in the summer. I had a bout with the flu then had issues with numbness or more accurately tingling and pins and needles in both feet. This progressed up both legs to mid thigh in the next weeks.
My father contracted Guillain Barré after a flu shot
My father had Guillain Barré which he contracted after getting a flu shot. After suffering an up and down roller coaster, one step forward then 6 or more back, for several years finally succumbed to illness and passed on in 2005.
I was concerned that my legs were going numb so soon after having flu symptoms when all his problems started after a flu shot and his first symptoms was the loss of use of both legs. Then arms... And worse. He recovered to walk but then relapsed time and time again.
Got an RRMS diagnosis
So I went to my doctor who began some tests and reported that my reflexes were very brisk. I also have the babinski sign. After series of tests and meetings with a neurologist, I got the diagnosis. I have RRMS.
The pins and needles never go away
My symptoms or some of them come and go. Some get better. And some never go away. My feet still feel like they fell asleep and just woke up - pins and needles. It never goes away. I can't get them to completely wake up and the feeling to return to normal. Sometimes I feel like I'm walking with balled up socks under the balls of my feet. I also have slight (not as extreme) tingling in my right hand and sometimes right arm. That comes and goes. I have balance issues. But that might also be because I have bad knees or had bad knees. I was bone on bone osteoarthritis and have had both knees replaces in the last year and a half. My strength and balance are better now but there are times especially when I'm really tired that my balance goes.
Fatigue, bladder issues, and "fuzzy" feelings
I sometimes have the fatigue people talk about. And I have bladder issues. And for a brief period of time experienced the "MS Hug" I'd heard so much about.
I think I have had symptoms during various times in my life long before ever being diagnosed. At least 5 years prior I had similar symptoms of having "fuzziness" and tingling in both legs and feet. My doctor at the time was not the same as now, and the issue then was attributed to using a feather bed which was purchased about the same time frame as when the symptoms started. Discarding the feather bed did not mean immediate results. But in time things did finally return to normal and so we decided it must have been that feather bed.
I had a similar issue about 7 years ago where my doctor diagnosed carpal tunnel in my right wrist. I even had the surgery which helped or did it? Strangely part of my symptoms then was that I had tingling in my hand which went up my wrist over half way up to my elbow. Carpal tunnel is an issue with the nerves at the wrist.
3 generations of autoimmune diseases
I've talked to a handful of others that say they have MS and have a history of someone (parent aunt or uncle) with Gilliam Barre. How strange is it that autoimmune runs in families? My daughter also had Spinal Meningitis at 18 months old (26 years ago) and was lucky to fully recover with no issues. 3 generations of similar but different autoimmune diseases.
I'm hopeful for the future. So far so good. I have issues but none near as bad as some others with MS. One of the things I like to do is to ride bike (as in bicycle) and so for the last 3 years I've participated in the MS Bike Ride and plan to this year as well. My way to give back to the MS community.
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