Newbie here...my story

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Newbie here...my story

Postby StaceyB » Tue Feb 21, 2012 4:38 pm

Since being diagnosed I've been looking for a site to share stories and compare notes. I'm fairly new to the MS diagnosis, and it did come as a complete surprise. Sometimes I'm hesitant to believe I have MS. I had only been to the doctor for well visits (except for a brief problem with my knee a few years ago) until last year. Now I'm happy if I go a month or two without a visit to a doctors office. I'm 46, almost 47...so I've had a healthy life. About 6 or 7 years ago I had some problems with my neck, shoulder and knee, but I kind of expected that because I spent about 6 years in gymnastics when I was younger and was very athletic. I landed to frequently on my neck and shoulder, so I expected issues with that when I got older. Anyhow all the craziness begain in July of 2009. It started with a tingling (like when your leg falls asleep) a couple times a day, then progressed to complete spasms on my right side -- the leg up through my face. It was periodic at first maybe a couple times an hour over the course of the day but then esclated. Before we found a medication that would stop the spasms, I would have up to 50 in an hour ocurring most frequently when I was "trying" to be active. It wasn't painful but extremely uncomfortable.

My GP had sent me immediately to a neurologist when I first went in. The neurologist scheduled an MRI and spinal tap...both which came back as indicative of MS. The spasms were caused by an active lesion in the motor cortex. Since it was my first clinical episode they were hesitant to give me a definitive diagnosis. I had a second MRI 6 months later which still was pointing towards MS. My spasms went away about 5 months after they started. My doctor had given me a 60 to 70% chance of further ocurrences. Since then though my doctor moved out of state and I went under the care of the other neuro in the office which was great because she's an MS specialist. After reviewing my case, she feels it is MS, but she said I seem to be lucky because so far it is very mild and will hopefully be controlled by the medication I'm on. I ended up taking Rebif because it was the most affordable for me (at least as long as the MS Lifelines assistance is available). I haven't paid a penny for the drugs yet!

Now my big question to everyone is what other problems have you experienced along with MS. Since being diagnosed with MS in 2009, I have had so many issues. It so strange because up until 2009, I was the poster child for a healthy person - in 10 years of working I only missed 2 days because of illness. About 6 months after the initial muscle spasm problem I started having pain in my right shoulder. It gradually got worse over time and after about 4 months of it I went back to the neuro - by then it was moving into my left shoulder as well. They ran a CT scan and did an EMG test...turned out I have bulging discs in my neck and lower back, so she thought maybe it was a pinched nerve. I then went to a physical therapist for an evaluation, and she immediately suspected frozen shoulder (as did I after much research). I was then off to an orthopedist who confirmed that. So I had a double case of frozen shoulder and never want to experience it again. It was probably the most painful thing I had every experienced. It's been about a year now and I've gotten most of my range of motion back but am still lacking a little bit, and I still have a little discomfort in the left shoulder. If it hadn't been for months of physical therapy, I'm sure I wouldn't be doing this well. While doing research I did discover that frozen shoulder can occur more frequently in someone with an autoimmune disease.

I have also been experiencing restless leg syndrome...which is so annoying. Luckily it usually only bothers me in the evening when I'm watching tv...it has only woke me up once. Hope it stays that way.

Then to top it all off I started to have menstrual problems...I thought maybe premenopausal issues...I bled for over a month straight and now my periods are unpredictable and best of all I was found to have a complex ovarian cyst and am going in for a CA 125 blood test tomorrow. They are taking the conservative wait and see approach which is ok with me because I'm not having any pain with it.

All these things in 2 years, and I just wonder how much of it could be related to the fact that MS is an autoimmune disorder. How can a person be healthy for so long and then just have one issue after the other? I'm greatful though that the MS side is in check because I don't really have any direct issues with that at the moment...so I hope my doctor is right and that it is a mild case and maybe the Rebif will help prevent or delay further issues.

Anyhow sorry for rambling on...just wondering if anyone else has had a similar history. MS diagnosis but most issues not MS symptoms?
StaceyB
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Joined: Tue Feb 21, 2012 4:04 pm

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Re: Newbie here...my story

Postby lyndacarol » Tue Feb 21, 2012 6:54 pm

Welcome to ThisIsMS, Stacey. I will be surprised if you find anyone with a story similar to yours; cases of MS are usually unique. We share some symptoms, but have lots of differences.

It is not unusual for a person with one "autoimmune" disease to develop a second or third one. My mother-in-law had a diagnosis of rheumatoid arthritis, then Sjogren's disease, and then hypothyroidism. I was diagnosed first with endometriosis and 10 years later with MS.

My personal belief is that excess insulin is fundamentally involved in the MS cascade. Currently I believe that, in my case, visceral fat promotes secretion of (–>) cytokines (adipokines) –> insulin –> inflammation –> visceral fat and round and round it goes.

I think the excess insulin leads to damage inside of blood vessels (causing inflammation and triggering the immune system) and also to smooth muscle and skeletal muscle insulin resistance (causing the "creeping paralysis" description decades ago).

This hypothesis is the one that seems most logical to me; but just as each member has a different set of symptoms, each of us has different suspicions of what is going on in this disease. Please read and share the ideas that you find, share your experiences, and share your questions. Welcome to our community.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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lyndacarol
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Re: Newbie here...my story

Postby StaceyB » Tue Feb 21, 2012 7:25 pm

It's good to learn that so many have different experiences with the disease. My Uncle had MS and ended up dying from bone cancer. He lived with it for about 45 years finally ending up in a wheel chair for the last 5 years or so. When I was working I had a client that was diagnosed with MS and within 2 years she went from "normal" to a wheel chair and severe limitations. Fortunately I'm on the other end of the scale so far...no real noticable MS symptoms just a bunch of other oddball conditions. I only wish there was a definitive way to diagnose MS rather than it being a disease of exclusion.
StaceyB
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Posts: 8
Joined: Tue Feb 21, 2012 4:04 pm


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