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Spinal Cord Disorders Message Board


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Thank you so much, everyone for taking time to reply. No need to apologize for making it long. I really appreciate all of your input. At this point we are going to pursue the CT of the brain and see if there is anything going on there. This history goes back to college years with inability to sleep, back pain, chiropractors, laminectomy in lumbar region in 1978, physician noted at that time there were other issues in his neck and between his shoulder blades. He stayed active, exercised, stayed strong. A very active grade-school teacher. Never could sleep well and always on the edge of being sick. Swollen joints finally led us to a rheumatologist in 1990. He was treated for ra for several years and then improved greatly by changing his diet and using supplements. Rheumatologist nearly threw him out of her office when she learned he had weaned himself from the meds and was doing so much better. Joint pain was pretty good, but still had muscle pain in back, legs, arms. Needed carpal tunnel surgery some time in the 90's. He complained for years that his muscles all over felt like he had the flu. Heavy and achy. And that he felt like he couldn't think clearly. Doctor started treating him for depression with Zoloft. He became a totally different person. Very angry and nasty. I had no clue it could be the medication, but he got himself off that and became nice again. He had also gained a lot of weight with it, but lost it. He's always been tall and thin.Everytime a new medication was started, he had bad reactions to it and would quit. He went to a lot of doctors and just didn't seem to get any help. All they could do was lots of different tests and then tell him it all checked out fine. He had a bad incident with a chiropractor who noticed he didn't have a proper curve in his neck and really gave him a good Wham. He was in bed for 10 days to recover from that. He kept trying alternative therapies such as colonics, hydrogen peroxide baths and then drinking drops in water when we could no longer get large quantities. Also, alfalfa (lots), and supplements. Treated for candida overgrowth. It kept him going for quite a long time, but never made him well. He had had several episodes of passing out, severe chest pains that radiated down his arm like a heart attack. They found he had an irregular heartbeat, but said nothing was wrong with his heart. Finally, in 2001 his school recarpeted, new cabinets freshly stained and varnished were installed in his classroom and new ceiling tiles as well. He had a severe reaction to all the chemicals and we saw an allergist. Also, went to an acupuncurist. His heartrate kept dipping down very low and he could hardly function. He also got some horrible rashes during this time. He left his teaching position at the end of that school year and just tried to rest and get better. He took another job the following fall at another school and barely made it to Christmas break. The following March he had a pacemaker put in at Cleveland Clinic. They said the problem definately was a messageing one, and not something actually wrong with his heart. His energy level returned, but he still had the overall sick feeling and pain. The school hired the substitute for full-time and rather than fight for his job back, he moved on to another school the next fall. He lasted 2 weeks and then collapsed on his classroom floor and he was back in the hospital. At that point we applied for ss diability. He was denied and being unfamiliar with the system assumed that his only choice was to get better and get another job. The allergist lady kept telling him that he just needed to find the "right" job and then everything would be okay. He was walking like 3 miles several times a week and when he said how hard it was, she said do 5 miles! I really think now that all of his doctors looked at all of these weird symptoms and assumed it was depression. Well, I'm sure that by this time he was depressed because he had been in pain for so long and no one could help him. Every anti-depressant made him worse. He spent another year of just trying to rest, exercise, and get well. He did some substitute teaching as he was able and that next fall got an office job with Headstart. Now he was having trouble concentrating, remembering things, and still had all the pain. We went to other doctors who just wanted to look at one symptom at a time and try a different medication for each one. He couldn't do the Headstart job. He just couldn't keep things straight. He was sent to a psychologist and a psychiatrist. We went to Cleveland Clinic to a rheumatolgist and was diagnosed with the fibro. All the tender points thing. The only plan at that time was to start an exercise program working up from 10 minutes a day of walking. Steve has continued to try to keep moving, but has only gotten worse. He developed really bad psoriasis on his elbows and head. Because Cleveland is 5 hours away, we went to the only other rheumy in our area who diagnosed psoriatic arthritis and refuses to treat him for fibro. He was on Enbrel for over a year, but quit that in order to have a mylegram CT of his cervical spine and to avoid possible infection. He has not restarted the Enbrel. He put on about 50 lbs with that and has not lost much of it. We are very concerned about damage that medications can do. The psoriasis hasn't gotten bad again and the joint pain definately can be controlled with diet. (Mostly avoiding wheat) We found the fibro/cervical link on the internet and have pursued that course. He has tried neurontin twice. We didn't realize it was the same one because you get different names when it's generic. He had tried it in January with one doctor and felt very strange in his head. This last time was in May. A different doctor. Well it must have helped his pain, but you know what they say, "No pain, no brain" Yup! That's just what happened. He was picked up 2 miles from home by the state police when some people noticed him walking around looking confused. He had to walk down a dirt road through the woods, up and down a couple hills to get where he was. He didn't know his name, where he was, or how he got there. Somehow, he remembered our son's name, but not the last name. He came up with something close and they figured it out. His precise symptoms now are, dizziness (room spins especially when he looks up and he falls over), mental confussion, but this is worse when he takes medication. The current one is baclofen (sp?). Because of his reaction to the neurontin, he's supposed to work up from half a pill once a day, to two pills. He has taken the smallest dose for over a week at a time and gets so brain dead and feeling sicker that he has quit it. It does seem to take away the pain in his legs, but he can't keep a straight thought in his head. He walks slowly and can not really lift his feet properly. He has hearing loss on one side. SEP test showed slowed nerve responses, but Cleveland doctor does not take that test seriously. Both Dr. Heffez and the neurologist here found hyper reflexes in the knee, but the dr. in Cleveland either didn't hit him in the same place or something, because he didn't have the same response that day and no note was made of it. Numbness in fore-arms when slightly raised. (Has difficulty shaving, drops things) Numbness in thighs. Vision goes blurry after reading for a few minutes. He doesn't drive unless absolutely necessary. He walks short distances, maybe up to 100 yds before he's exhausted. He has always loved the outdoors, hiking, canoeing, kayaking, etc, but now finds bright sunshine almost painful. All of those activities would be impossible for him now. He rarely leaves our home. He watches TV most of the day to take his mind off how he feels. His neck and back always hurt. His calf muscles are in knots. Physical Therapy made his neck worse. He's had some massage. So far they have also been into crystals and such and we're not so sure about all that stuff, but the massages are good. I keep trying to get him to find someone, but I know he feels guilty about the costs. We have 2 children in college and one will be a senior in a Christian school, so there's an expense there. We are getting ss diability now and that helps, but there were several years in there where we had to use up all our other resources. I have a great job and I'd better get back to it! I know this is way too long and if you've actually read all the way down to here, thank you. I just wanted to explain further, that this latest thing with the ACDF isn't like a first resort. I really appreciate hearing about other people's experiences. I know that this surgery isn't something we want to just jump into. Thanks for all your help.

Sue





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