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Can anyone help me?

Posted In: Medical Stories 11 Replies
  • Posted By: moonshadow1
  • July 2, 2011
  • 08:15 AM

I am between doctors due to a move, but I may as well have one. Every doctor I have been to in the past five or six years doesn't seem to have a clue on how to treat me; I have had two or three doctors (I have moved several times) and each one has ignored my symptoms. It is as if I never spoke to them at all. It has been horrible. I believe each one has expected me to have some other type of specialist taking care of me that they didn't have to intervene with at all, including not obtaining my records to follow my progress. The truth is, I have no such specialist.

I have spinal stenosis and post polio syndrome and no one is following me for it. My main symptom is unbearable, excruciating daily pain, for which I take increasing doses of morphine and oxycodone. I have drop foot on both sides, which increases my falls as well as decreased sensation in both feet which doesn't help me at all. I had a fall a few days ago and thought I broke a rib. In the ER, they said I have a contusion of my ribs The pain was very, very sharp and very distracting. The morphine wasn't helping but I couldn't take anything else because I am in a contract at a pain clinic for my medications.

My most worrisome symptoms are the pain which is present in nearly every part of my body, except my head. I get a lot of migraines, however to make up for that. I have peripheral neuropathy and it has been worsening steadily in my left leg to the point that I am experiencing paralyzation in my left foot. I cannot move most of my toes even though I try to bid them to move with my mind. The sensation in that foot and leg is like a heaviness, tingling, and the feeling that it is beginning to creep up my leg. It is hard to describe but believe me it is frightening me. And, as I said,, I am always scared about what is happening to me. Will I end up paralyzed? Who should I see? Can I trust the new PCP I will pick out, or even the medical profession in general?.






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11 Replies:

  • I think I can help you, provided that you really >
    alltimatehelp 128 Replies Flag this Response
  • I think I can help you, provided that you really >I do have peripheral neuropathy. I visited a neurologist some years ago when it was first developing. He did a lot of tests including labs, xrays, MRI, CT, EMG, and others. The EMG showed definite decrease in nerve signal in both legs and arms. He was the one who had given me the diagnosis of post polio syndrome a few years prior. He never mentioned spinal stenosis, though, even though he had done an MRI in 2005. He began treating the nerve pain and other symptoms in my feet with gabapentin. It worked, but over the next year, I had to be on increasingly higher and higher doses until I maxed out the dose. I am still on the highest dosage possible. It definitely does help, but it does nothing for the excruciating total body pain I have. Over that year, the neurologist only had one visit with me, at his decision! My PCP told me he didn't feel qualified to treat me when I told him about the pain. He literally threw his arms up in the air. I left angry. I stopped seeing him. My psychotherapist, a NP, took over the dosing of my gabapentin. The neurologist definitely thought a lot of the pain was in my mind. He made that supposition since I was also suffering from depression. Over that year, the pain increased exponentially. It started in my feet and moved up my legs to my knees. My hands and arms became painful, as did my neck, back, shoulders, hips, knees, everything. Not just nerve type pain. Also sharp, throbbing, burning, dull, cutting, twisting pains, everywhere except my head. I felt like I was on fire and even air over my skin hurt. My husband (we are now divorced) would get me out of bed in the morining, help me to the couch, and leave me there until he came home in the evening, when I would be helped to the bed. He cooked supper. I wore diapers during the day, which I kept at the side of the couch. I ate nothing and drank what water I may have had by the couch. For nearly an entire year I did this. I didn't visit a MD as I had lost faith in them, but the pain was finally driving me to consider suicide, so I went back to a PCP and to the neurologist. He told me he wouldn't treat my pain, and asked me if I was depressed. I walked out and never went back. However, the pain drove me seek out a new PCP. She was a NP and was astute enough to send me to a pain clinic, where I have now been going monthly now for six years. Some months my pain is controlled about 50% or so, other months not at all. It is a roller coaster.In the morning when I wake up, I literally feel as if I had been beaten badly all over my body the night before. I'm not guessing about that, either. I have been beaten severely and sadistically numerous times by my first husband. That is how I feel without the morphine and oxycodone. No one is helping me now due to moving and not having a pcp at this time. I was forced to move due to a natural disaster. I am temporarily living with relatives at this time, my stuff in storage. I went to the post polio clinic at Spaulding Rehab in Framingham, MA where another MRI was done in 2010, which showed extensive foraminal stenosis with severe xpondylolisthesis at multiple levels. Certainly this didn't just show up since that last MRI?In spite of this, I still am not being treated. Many times I know I would feel more secure in a back brace. As it is I have AFOs I can't use as I can't find shoes to fit, I have MD ordered forearm crutches, MD ordered electric wheelchair, admonitions not to excercise due to the post polio, except for swimming gently and for short periods. If I do overdo a thing, like mopping the floor, I feel so close to collapsing from extreme weakness and temporary inability to even move my legs, that it frightens me. Can you steer me in the right direction? I am scared, I feel under-diagnosed, under treated and alone. Thank you.
    moonshadow1 7 Replies Flag this Response
  • "My PCP told me he didn't feel qualified to treat me when I told him about the pain. He literally threw his arms up in the air. I left angry. I stopped seeing him."= at least, he was honest with you. We all just people, not gods, so please be patient to doctors. Unfortunately, sometimes there are medical cases when even very good doctor feels himself unhelpful."Not just nerve type pain. Also sharp, throbbing, burning, dull, cutting, twisting pains, everywhere except my head. I felt like I was on fire and even air over my skin hurt."= it sounds like inflammation of your peripheral nervous system (PNS).As regarding your pain issue, I suppose that it's possible to stop pain. It 's necessary to investigate this issue more deeply in order to find out the real causes of your pain. My preliminary estimation indicates that probability of successful treatment (i.e. significant reducing pain symptoms and pain relief/elimination) is high enough.Paralysis/paresis is another issue. Yes, it is possible due to the problems with your spinal cord which controls PNS, and affected peripheral nerves. It's hard to say something definite about this issue without having any results of initial treatment. Maybe it is possible to stop its progression, and even to reverse, but it will take much time and efforts.Actually, the results of treatment depend on many factors. For example, if myelin sheath of neurons in your nerves at PNS is damaged, it will be difficult to cure such condition. But anyway, there are chances to achieve good results.What's your age? Is your date of birth between 1970-1980?
    alltimatehelp 128 Replies Flag this Response
  • my turn to help. This sounds like a problem for an orthopedist who specializes in lower back issues. The stenosis will likely settle on it's own - takes a few years, but sometimes the doc will give you an injection under anaesthetic for the pain and that helps some people. the foot drop(s) are serious and need to be further looked into as these are spinal issues, assuming you don't have MS or something. you may need a fusion - Ortho doc is your best bet. Not sure if you are in Canada or US or how easily you can be referred. good luck!
    mibley 3 Replies Flag this Response
  • = it sounds like inflammation of your peripheral nervous system (PNS).As regarding your pain issue, I suppose that it's possible to stop pain. It 's necessary to investigate this issue more deeply in order to find out the real causes of your pain. My preliminary estimation indicates that probability of successful treatment (i.e. significant reducing pain symptoms and pain relief/elimination) is high enough. What's your age? Is your date of birth between 1970-1980?Yes, I am certain I have inflammation that at this time is exceptional. I have been through a very difficult transition with the move, etc, and am not in an ideal situation. None the less, I can barely function, and spend most of the day in bed. Last night, I had the worst pain I've ever had. It felt like my entire spine was on fire, as well as my arms, hands, legs, and feet. The pain in my feet was exquisite. The pain was so bad I was crying out all night. I don't know if I mentioned it, but I do take morphine and oxycodone in significant doses, with, at this point, only about 25% effectiveness-it has worked better in the past. Before I was forced to move because of a flood, I was slated for spinal injections, but now still have not had them. I have an appt with a new pcp on the 22nd. I am bringing a laundry list. I am on medicare due to my disability with no other insurance. I don't need a referral to any MD but I do need to know what type to seek out. I will seek the advice from the new pcp, but if I am unsatisfied, do you have any ideas? By the way, I was born in 1953, the end of the polio epidemic. The paralysis in my foot is getting worse and creeping up towards my ankle. I can't move my toes at all. I have bowel and bladder control issues as well. I do not have ms, at least last time it was looked at.
    moonshadow1 7 Replies Flag this Response
  • my turn to help. This sounds like a problem for an orthopedist who specializes in lower back issues. The stenosis will likely settle on it's own - takes a few years, but sometimes the doc will give you an injection under anaesthetic for the pain and that helps some people. the foot drop(s) are serious and need to be further looked into as these are spinal issues, assuming you don't have MS or something. you may need a fusion - Ortho doc is your best bet. Not sure if you are in Canada or US or how easily you can be referred. good luck!Thanks for your answer. The stenosis, which is due to bony overgrowths, is worse in my cervical spine, although it is significant in my lumbar spine as well. The foot drop has been attributed to the post polio syndrome. I was slated for spinal injections before the flood, but since I was forced to move I still have not received them. I don't have ms according to my former MD. I do have several herniated discs and a failed back surgery as well. I am not so certain I want to subject myself to more surgery. I don't know what to do, and have been told that surgery for the stenosis will not be helpful since it is on so many levels. I really feel, at 57 years old, that I just want to check myself into a nursing home and wait to die. I am that miserable. I only live for pain control. My entire life has been devoured by this pain and weakness. I used to be an active RN before all this started. At first I was depressed and angry, but now I am resigned to being sick until the day I leave this earth, may God make it soon.
    moonshadow1 7 Replies Flag this Response
  • I think several needles will help to stop your pain/inflammation. But I can not say more definitely without deep diagnostics of your health state. Sorry, I prefer do not use medications when it is possible, besides, in many complicated cases most drugs are useless for proper treatment.Are you sure that your inflammation/fever was not caused by infections? What's the state of your immune system? Any tests results? Do you have any problem with your glucose level (diabetes/hypoglycemia)? Any endocrine disease?
    alltimatehelp 128 Replies Flag this Response
  • Thanks for your answer. The stenosis, which is due to bony overgrowths, is worse in my cervical spine, although it is significant in my lumbar spine as well. The foot drop has been attributed to the post polio syndrome. I was slated for spinal injections before the flood, but since I was forced to move I still have not received them. I don't have ms according to my former MD. I do have several herniated discs and a failed back surgery as well. I am not so certain I want to subject myself to more surgery. I don't know what to do, and have been told that surgery for the stenosis will not be helpful since it is on so many levels. I really feel, at 57 years old, that I just want to check myself into a nursing home and wait to die. I am that miserable. I only live for pain control. My entire life has been devoured by this pain and weakness. I used to be an active RN before all this started. At first I was depressed and angry, but now I am resigned to being sick until the day I leave this earth, may God make it soon.How do you know, maybe God has another plans for you?If you continue to fight, you have chances to win war even you lost many battles. If you give up, you lose anyway.Herniated discs is not a problem to treat - it can be cured without any surgery. As I said, I can help you to stop your pain, the chances are good.
    alltimatehelp 128 Replies Flag this Response
  • How do you know, maybe God has another plans for you?If you continue to fight, you have chances to win war even you lost many battles. If you give up, you lose anyway.Herniated discs is not a problem to treat - it can be cured without any surgery. As I said, I can help you to stop your pain, the chances are good.How do you cure herniation without surgery and how can you help my pain?
    moonshadow1 7 Replies Flag this Response
  • How do you cure herniation without surgery and how can you help my pain?I use old acupuncture technique for treatment. This is the most effective way to cure serious chronic diseases & complicated conditions among other ways and methods that I know. For your case, acupuncture is very helpful tool for pain relief. But it needs some patience and self-discipline. For example, to cure herniated discs completely, it is required usually several monthly courses of everyday 30-minutes procedures during a year for one or two years.The positive changes in the health during and after the treatment occur slowly and gradually, little-by-little. But taking into account your bad current state, even after two or three weeks after the starting treatment you will feel significant improvement in your health. I think it will be enough about two or three months of the treatment to remove your main pain symptoms.If you want, I can explain what you have to do and how to start the treatment in order to get rid of your pain.
    alltimatehelp 128 Replies Flag this Response
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    hogndog 426 Replies Flag this Response
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