Hi, I found your forum and am hoping for some ideas for my spouse. He has had some major problems over the past 3 years and the doctors still don't know what is wrong with him. But last night he told me that his head felt like it was going to explode, and even touching the side in the softest manner hurt him exceedingly. He does have glaucoma in the right eye which we are sure is worse, as we were not able to afford the very high prices of the eye doctor that he was seeing. I'm not sure if he should go see an eye doctor or a regular doctor. He was almost crying from the pain.
His other problem, which has caused him severe depression and subsequent finding of disability, is severe pain throughout the body. Sometimes he says it is in his leg, other times the pain is everywhere. He is on 12 oxycodone a day, but to completely stop the pain he would practically be knocked out. He has had every blood test under the sun I think, and x-rays, CT's and MRI's. He also had occipital neuralgia, which upon it's occurrence, hurt so bad that he couldn't even tell the pain in the rest of his body. He got nerve blocks twice and the pain finally went away, but then the pain everywhere else became noticeable again. He had a NCS and EMG and I noticed that on one leg there was no electrical response until the knee area. The doctor did not seem to think this was a big deal. An orthopedist who saw him found that his reflexes were strange. He said they were reversed. A neurologist who saw him basically said there was nothing wrong with him and gave him a med which didn't help at all. He also has major problems with defecation and now has to resort to suppositories for any relief. He had bladder problems and the doctor said he needed a TURP, so he got one of those. That problem has come back. Sometimes he lies flat on the bed and has me push his legs toward his head with knees bent and he says that does help. Usually I am pushing them to what I feel is close to total bend-back and it scares me. About 20 years ago he had a fractured or maybe broken vertebrae, I don't know the level. Don't know if that matters or not. His pain began with tingling and a burning sensation in his legs and we changed his shoes. He was constantly working on his feet, always has. At night he had restless legs, always jerking in the bed and waking me up. That has been the norm for almost 40 years. The burning pain is why he takes the narcotics. He could not take codeine as it affected his breathing. He also used that drug that is given to patients who are being weaned off of cocaine but I cannot remember what it is called. That did not help.
Before I finally made him quit working he had several incidences of severe dizziness. He stated that it seemed to happen when he was on the ladder reaching for a part from above. The second time I had to be driven to his work and he was lying in the car and was very pale. He did not want to go to the hospital. Last night and the night before, he said he felt very strange and dizzy, but did not want me to take him to the hospital.
The only other thing that comes to mind as being unusual is that he would often get these nodules under the skin. He was told that these were cysts. One on his neck was handled by a med tech at a prison he worked at and was fine. Then after he started having the tingling/burning sensations he noticed he had one on his leg and went to a surgeon to have it removed. Because our kids have had stitches in the past and had gotten them out in 3 days, I removed his in three days. But when he went back to work he started to have blood running down his leg and we bandaged it up and put neosporin on it. I checked it about one week later and saw the edges of the wound had turned black. I took him right back to the surgeon who cut this off and restitched the leg. It took six months at least, for the wound to heal. I was thinking diabetes but the surgeon didn't seem concerned. I also have noticed that his legs have gotten downright scrawny looking.
We have saved all of the records and test results and have some actual x-ray and ct results on a disk. Do you have any idea at all of what might be causing this pain or what kind of doctor I should take him to? We love our local MD but we don't think that he is all that knowledgeable as he has no clue and just wants to send my spouse to a pain clinic, so I want to take him to Nashville but just don't know what kind of doctor to take him to. I'm at my wits end because I am unable to help him.
How is your husband? I'm sorry to hear what he has been through for the last 3 years. I understand that there has been a spectrum of symptoms that he had been experiencing for the previous years. It is possible that these are associated or may also be caused by several conditions. If the diagnostic tests were inconclusive, further evaluation must be done. Starting with the more recent symptom of severe headache, complete neurological examination, a recent imaging study and referral to a neurologist may help. Take care and do keep us posted.
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