If
you find a Board Certified Neuromuscular
Neurologist who specializes
in neuropathy, you have found
a great resource. If this neurologist
works with patients with MS
this is a great sign of competence
in the field of neuromuscular
medicine.
Then learn all you can about peripheral neuropathy. You do not need to become a doctor or a neurologist as that takes years of training! Look at the Resources TAB in this web site and obtain the books by Latov, Cushing and Berman. Then make them your medical Bibles. They are gold mines of information and the one by Cushing will help you learn of things available to the patient given the many challenges of neuropathy.
You will find in Cushing’s book ideas that work for patients that doctors may not be aware of. Not all these ideas will work for you or even be acceptable to you. The idea is to explore everything available for something that will work for you!
A patient support group is another place where you find support, information and ideas. It was a patient who helped me solve issues with my infusion from their own experience. Sharing these with my doctor, we solved the problems! It was in the books and at the Association that I learned about a trial of gamma globulin, endorsed in an article by over 20 neurologists and this was the life saver. I shared this with my neurologist and it worked! Some neuropathy solutions are not even this complex and you may find yours in the books! Read, learn and then share with your doctor.
The third thing I would do is order a copy of the DVD mentioned in the TAB at this web site. You will be supported, enlightened, inspired and challenged.
Then the last thing is to avoid the “snake oil sales”. Whenever a disease is difficult to diagnose and treat, the “snake oil sales” abound. Some of the ideas and products that have been developed may help and may be worth exploring. Look for the exaggerated overstated claims. If it sounds too good to be true, it is too good to be true! For example, this product cures all neuropathies. This product restores all nerve function and prevents all neuropathies. If you have read Dr. Latov’s book understanding Peripheral Neuropathy and the causes, you will see the words that should alert you to false, overstated or misleading claims.
Look to see if it is approved for payment by Medicare or other insurance. While not a total guarantee, this may mean that some testing and research has been done. If the company wants payment up front with no insurance payment possible, I would not go there, as they need to do the controlled studies to establish effectiveness, limits and risks.
Another helpful clue is the trial period. Does the company state that if the product does not work for you, you may return it after a trial period and receive a refund? Many good companies acknowledge that no product works for everyone, especially the neuropathy patient with neuropathic pain or symptoms throughout the entire body. This is reality, so a money back trial period is a good thing and shows responsibility.
The important point is not to give up and stop looking. I spent 31 years looking for help with none provided, losing two great promising careers. I spent another four years looking for help only to face numerous insults and incompetence.
The late Mary Ann Donovan of The Neuropathy Association shared one important point in my desperate hour of demolished hope by a so called neuropathy expert who said, “Patient is claiming to have something he does not have.” That Neurologist had thirty years plus of medical history, an abnormal EMG and an abnormal Nerve Conduct study. After thirty years of illness I had some hope, but my hope was destroyed. Desperate, I called the Neuropathy Association in 2000. Mary Ann said, “The doctor is not your problem, your problem is your disease, so keep looking for someone to help.” Great advice! She saved my life because I found an answer four years later with a skilled Neuromuscular Neurologist.
Courage and determination are important assets to the neuropathy patient and my hope is that with increased research and clinical training such experiences will become a thing of the ancient past. Feed your courage and determination!
Then learn all you can about peripheral neuropathy. You do not need to become a doctor or a neurologist as that takes years of training! Look at the Resources TAB in this web site and obtain the books by Latov, Cushing and Berman. Then make them your medical Bibles. They are gold mines of information and the one by Cushing will help you learn of things available to the patient given the many challenges of neuropathy.
You will find in Cushing’s book ideas that work for patients that doctors may not be aware of. Not all these ideas will work for you or even be acceptable to you. The idea is to explore everything available for something that will work for you!
A patient support group is another place where you find support, information and ideas. It was a patient who helped me solve issues with my infusion from their own experience. Sharing these with my doctor, we solved the problems! It was in the books and at the Association that I learned about a trial of gamma globulin, endorsed in an article by over 20 neurologists and this was the life saver. I shared this with my neurologist and it worked! Some neuropathy solutions are not even this complex and you may find yours in the books! Read, learn and then share with your doctor.
The third thing I would do is order a copy of the DVD mentioned in the TAB at this web site. You will be supported, enlightened, inspired and challenged.
Then the last thing is to avoid the “snake oil sales”. Whenever a disease is difficult to diagnose and treat, the “snake oil sales” abound. Some of the ideas and products that have been developed may help and may be worth exploring. Look for the exaggerated overstated claims. If it sounds too good to be true, it is too good to be true! For example, this product cures all neuropathies. This product restores all nerve function and prevents all neuropathies. If you have read Dr. Latov’s book understanding Peripheral Neuropathy and the causes, you will see the words that should alert you to false, overstated or misleading claims.
Look to see if it is approved for payment by Medicare or other insurance. While not a total guarantee, this may mean that some testing and research has been done. If the company wants payment up front with no insurance payment possible, I would not go there, as they need to do the controlled studies to establish effectiveness, limits and risks.
Another helpful clue is the trial period. Does the company state that if the product does not work for you, you may return it after a trial period and receive a refund? Many good companies acknowledge that no product works for everyone, especially the neuropathy patient with neuropathic pain or symptoms throughout the entire body. This is reality, so a money back trial period is a good thing and shows responsibility.
The important point is not to give up and stop looking. I spent 31 years looking for help with none provided, losing two great promising careers. I spent another four years looking for help only to face numerous insults and incompetence.
The late Mary Ann Donovan of The Neuropathy Association shared one important point in my desperate hour of demolished hope by a so called neuropathy expert who said, “Patient is claiming to have something he does not have.” That Neurologist had thirty years plus of medical history, an abnormal EMG and an abnormal Nerve Conduct study. After thirty years of illness I had some hope, but my hope was destroyed. Desperate, I called the Neuropathy Association in 2000. Mary Ann said, “The doctor is not your problem, your problem is your disease, so keep looking for someone to help.” Great advice! She saved my life because I found an answer four years later with a skilled Neuromuscular Neurologist.
Courage and determination are important assets to the neuropathy patient and my hope is that with increased research and clinical training such experiences will become a thing of the ancient past. Feed your courage and determination!
0 التعليقات:
إرسال تعليق