PeopleWithMS.com |
shimmie |
shimmie
I’m Shelly, 11/11/63, single, no kids. I have 3 brothers, 1 sister (youngest bro & sis are twins), 3 nieces and 3 nephews. I live in Springfield, IL. I’ve also lived in southern Illinois (Mt Vernon & Centralia), Memphis, TN, and Marathon, Florida Keys, FL. Knowing what I know now, I believe I could’ve been diagnosed with MS 15 years ago, but since I didn’t know anything about it, I just ‘dealt with it.’ It started with tingling in my left arm, to the point where I couldn’t raise my arm independently, spreading down the left side of my body and I began to ‘drag’ my leg. I ended up going to a chiropractor, and after 6-8 weeks, things finally got ‘back to normal.’ (I can’t recall ever not having what I now know to be symptoms of MS, specifically L’Hermitte’s Sign). Problems started back up again in July 2000 - extreme pain in right side of neck. First, I thought I’d slept wrong, but it didn’t go away, it got worse. Finally, I went to see my Dr, she dx’d muscle spasms, rx’d a muscle relaxer and an anti-inflammatory. By October, I couldn’t turn my head left or right without an extreme ‘pinching’ pain; Dr rx’d physical therapy but I wasn’t able to complete my first session due to pain and nausea. Dr ordered x-rays Nov 4th, reporting ‘Muscle spasm’. Nov 13th she ordered an MRI because I still couldn’t turn my head in either direction, making driving and working difficult to the point that I was going home early or not going to work at all. MRI reported “disc bulge at C4-5 & C5-6”. Dr rx’d Prednisone and referred me to a neurosurgeon. I saw the neurosurgeon on 12/14/00. Dr said I needed surgery due to cervical bulging discs. I said surgery was not acceptable, so she rx’d P/T and referred me to the Pain Mgmt Clinic for a series of cervical epidural steroid injections. I began P/T on 12/28 and on 1/17, I received the 1st of three cervical epidural steroid injections at the Pain Mgmt Clinic. On 1/31, the p/t told me she wasn’t going to continue treating me because I “wasn’t progressing at the rate” she felt I should be, however, she continued with that day’s session. While ‘manipulating’ my neck, I felt a sharp, painful ‘pinch’ that caused me to cry out in pain. She said “Maybe I shouldn’t have done that” and ended the session. Within an hour of returning to work, the tips of my fingers had a numb, tingling feeling and by the time I got home from work a couple hours later, the numbness and had spread up to my elbows on both arms (more on the left). On 2/2, I returned to the Pain Mgmt Clinic for another injection, but the Dr refused treatment after learning about the arm/hand numbness and referred me back to the neurosurgeon, who ordered an MRI of the cervical spine. 2 days later, while at work, I received a call from the nurse. She said “without going into detail, the Dr has ordered another MRI, this time a little higher up”. (I thought to myself, how high up does my neck go?) So on 3/2, I had an MRI of the brain and a couple days later I got another call, again, at work, from the nurse saying I had Multiple Sclerosis and I wouldn’t be seen by the neurosurgeon anymore, I’d need to see a neurologist. While making my appt, his staff told me that he’d perform a spinal tap, so my mother went with me. He appeared upset that I hadn’t brought my most recent MRI (I was told I wouldn’t need to) and he wouldn’t be performing a spinal tap (had ‘no idea why I thought he would’), but ordered a blood test to check for Lupus - negative. I didn’t feel he was interested in answering any questions or verifying or dismissing a diagnosis of MS. In fact, when my mother asked him a question, he said “If we could ‘stop all the questions’ and get on with the ‘lecture’ we could ‘get this over with’.” (I decided not to go back to him.) On 3/23 my mother went with me to see another neurologist. As soon as he walked in the room, he said “I understand you’ve got questions, and I can tell you, you have Multiple Sclerosis.” He put one of the MRI films on the light box and pointed to a couple of the lesions in my brain explaining that they were MS. So there it was, RRMS officially dx’d 3/23/01. He rx’d Betaseron and gave me some literature regarding financial assistance. (I was approved for financial assistance but chose not to start therapy at that time.) In December ‘02 I had an MRI to compare the plaque load from March ‘01. It showed increased activity of existing lesions as well as new lesions. Two yrs later, he ordered another MRI for comparison (he was leaving my insurance group 10/1/04). Again, increased activity, new lesions and cervical degenerative disc disease at C4-5 and C5-6.
Sometime in August ‘05, I wasn’t feeling “quite right” so I saw a new neuro. He ordered several tests and x-rays, including wrists, shoulders, hips & pelvis (results showed a tumor on my right ovary). And on 9/1/05, MRI #6 to compare to 2004. It showed “several additional lesions in the medial right temporal lobe, an acute demyelinating plaque, and enhancement within the lesion shows acute/active progression of the disease”. MRI of the cervical spine showed “degenerative changes involving C3-4, C4-5 and C5-6”. I was dx’d with carpal tunnel syndrome in both wrists (more severe in the left) and was rx’d to wear bilateral wrist splints at night. The neurologist said unless I was willing to have carpal tunnel surgery and begin physical therapy, he wouldn’t see me anymore so I decided to severe the relationship and began seeing neuro #4 in Oct ‘05. In Feb ‘06 I had surgery to remove a cyst as well as my right ovary and was off work for 6 wks.
In April ‘06, I began having pain in my rt hip, affecting my entire leg, which continued for about 3 weeks and on 5/11, when I tried to get out of bed, my leg gave out from underneath me. I saw my neuro the next day; he rx’d a wk of Prednisone and an MRI to check for a pinched nerve. So I had an MRI of the lumbar spinal canal, it showed “bone spurs at L3 and L4” - no pinched nerve. He said it was an exaburation and ordered another wk off work and more Prednisone (AHHHH!). Upon returning to work on 5/22, my employer requested a work release in case ‘something happened’ and when I spoke with his nurse, she said he wouldn’t sign a release but he would excuse me from work for another week. I haven’t returned to work since and began Avonex therapy in July 2006. With Avonex, I have fever, chills, flu-like symptoms; feeling like a fleet of semi-trucks ran over me, my legs hurt, I have achy joints, in my jaw, shoulders, elbows, hips, knees and especially in my hands and fingers.
My legs feel like I’ve got concrete blocks tied around my ankles. I feel weakness and pain in my upper and lower extremities, pins & needles, numbness and tingling in my arms, hands, legs and feet, electrical shock sensations, stabbing, burning pain in my joints and muscles, poor balance, lack of coordination, unsteady gait, eye pain, dizziness, muscle spasms and fatigue. My fingers and toes are always cold. I frequently lose my balance, my hands shake; it’s become increasingly difficult and exhausting to get around. I use a cane to keep my balance. Extreme temperatures, hot and cold, as well as humidity, make the MS worse.
My family chooses not to talk to me about MS and how it affects me. They’d rather only spend time around me if it’s a benefit to them (i.e.-birthdays, holidays). They don’t call to check if I’m okay or if I need anything (meds, groceries). I quit driving in June 2006 because my brain got confused about which pedal was stop and which was go and after a couple more close calls I decided no more driving for me, but OMG, what an inconvenience to my family. Guess they’d rather me kill somebody (or myself) than help me. I’m so lucky to have made the friends I have in chat. Ya’ll are my life support, we laugh, we cry, we care about each other. Isn’t that what we all want and need? My family isn’t always my friend but my friends will always be my family.
My name
is
shimmie
