It is called, "Advanced Neuropathy" and I believe it is a stand alone clinic. I approached them for an initial consultation which was followed by a sensory exam and some balance tests. The exam cost $99.00. I returned for a third visit which was an analysis of my test results and the treatment program they were proposing. We have decided to hold off on the Neurology treatment and first finish the treatment used by the vascular surgeon. It may be that that process fixes the problem and a Neurologist isn't needed.
Yes, I have already been diagnosed by a neurologist. My symptoms were/are as follows: 1) discoloration of the lower ankles on both legs which has been the case for many years 2) scaling of skin in these areas - the skin is very thin, bumpy and susceptible to scrapes and bruises 3) pain, which is focused on the outside of my big left toe which inhibits certain exercise routines and biking. This condition was brought to the attention my podiatrist who said there was nothing he could do 4) water retention which causes swelling in the feet and ankles for which I take Lasix 5) numbness in ankles and feet.
Now, I have turned to a neurologist and, after he ran many sensory and balance has proposed a treatment plan which we are currently evaluating. Cost of the plan is in the $9,000 range. I mentioned this to my GP and she turned thumbs down essentially treating it as quackery. Since medical professionals pooh pooh the practice of neurology I have to figure out if this is a viable option or not which is why I approached this forum seeking independent reviews of the practice of neuropathy
Are you sure your not mistaking this neurologist for a chiropractor? Chiropractors usually run neuropathy centres and sell 9000 dollar treatments. Kind of like the Nerve Doctors on youtube. Theyre not Neurologists but chiropractors. Ive never heard of real neurologists charging that or being poo pooed by the medical community as neurologists and neurology is a real practice and real doctors. Its just that they cant really do anything after they diagnose you.
They do scoff at chiropractors though and theres a reason why insurance sometimes doesnt cover them.
The "Neurologist" that I visited mentioned he was a chiropractor for 15 years before he jumped into Neurology. That seems to be a common migration. He didn't elaborate on the reasons for this change. Of all the medical doctors I see look down on the practice of neurology.
The "Neurologist" that I visited mentioned he was a chiropractor for 15 years before he jumped into Neurology. That seems to be a common migration. He didn't elaborate on the reasons for this change. Of all the medical doctors I see look down on the practice of neurology.
Chiropractors cant jump into neurology……its years of medical schooling in a real medical school to become a neurologist. Hes a chiropractor selling “treatment” for neuropathy a neurological condition. Neurologists are the key doctors to see for Neurodegenerative Diseases, neuromuscular diseases…..MS, AlS, Parkinsons, Alzheimets etc…..its specialized practice that takes more schooling then a general practioner. The thing is there is no cure for Neuropathy. Why would doctors look down on neurology? If you went to the Mayo clinic for neuropathy you would most likely be seen by a neurologist not a chiropractor. Chiropractors have commercials on tv selling expensive treatments…if they worked you would think this would be provided at a hospital and then there would be NO neuropathy. Since there is no cure I compare it to a desperate cancer patient trying anything ….some chiropractors claim to have cancer treatments too….
One of the top researchers in Neuropathy Anne Louise Oaklander associated with Harvard and MGH is a neurologist. You cant compare them to chiropractors who work on spines mainly. Anyways a real neurologist isnt going to scam you and sell you a 9000 treatment protocol which is probably some redlight or shockwave therapy that “promotes” circulation or stemcells. Again if it worked that would be the treatment a doctor would presribe instead of gabapentin, lyrica etc….now if you have neuropathy from an autoimmune disease you can recover with IVIG.
But you mentioned you are seeing a rheumatologist if I remember correct. So you are lucky because they can an do presrcribe IVIG for autoimmune diseases. So you just might be one of the lucky ones who has a treatment….if it is autoimmune related, CIDP.
But Id bet the farm the person offering the 9000 dollar treatment isnt a REAL neurologist.
If those chiropractor cures worked I wouldnt have neuropathy and would have my life back. When I was in the hospital for over a week bone of that snake oil was offered to me….but weirdly I can walk into a chiropractors office with no referall open up my wallet and be cured 10000 dollars later. Well I wouldnt be walking as I can barely walk anyway
Thanks for the clarification. When they brought up their proposed treatment package for $9,000, with no guarantee of success we said, "no thanks". Unfortunately, the pains still there and I'm not content with that. My cardiologist is aware of the circulatory issues and nerve pain concentrated in one big toe and has referred me to a vascular surgeon who is not an ex chiropractor. Fingers crossed on that one.
Thanks for the clarification. When they brought up their proposed treatment package for $9,000, with no guarantee of success we said, "no thanks". Unfortunately, the pains still there and I'm not content with that. My cardiologist is aware of the circulatory issues and nerve pain concentrated in one big toe and has referred me to a vascular surgeon who is not an ex chiropractor. Fingers crossed on that one.
Good luck and sounds like your in good hands. Also hope your issue is not neuropathy and sounds like theres a good chance it isnt.
To be diagnosed its usually an EMG and a nerve conduction study that can hurt a little bit and those balance exercises you mentioned. I had to get those tests from a neurologist. And punch biopsy for Small Fibre neuropathy.
I suppose a chiropractor may do those tests at least the balance one too so they can diagnose but its the cures they sell that annoy me. I was led into quite a bit of false hope when I got this disease…… I am also no expert but just basing what Ive been told by doctors and looking at medical documents online ever since diagnosed.
If you do end up with neuropathy Im afraid if you dont have a treatable neuropathy you will find yourself having to treat it yourself and decide on those expensive treatments offered. Thats why youll see people asking about supplements, red light therapy and so on. And then its always “it might work for some but not everybody”.
So you end up trying things and if that red light therapy works then great!
The most I was offered was gabapentin and “dont lose hope.” I dont mean to be doom and gloom but thats been my experience and what I was told by other patients when this first started. I didnt really believe it at first but do now.
I should mention I dont like the neurologist Im seeing but Im putting it down to he cant do anything kind of like if I had a terminal cancer diagnosis. I think Id be getting more help if I had cancer to be honest. Ive seen 6 different doctors before landing with that neurologist so Ive kind of resigned to my fate.
But theres people here like John who have lived with this alot longer than I and may have great advice so this is just my thoughts as Im not a healthcare worker so just my opinions of what I have gathered
From what I've read gabapentin is a band-aid approach which masks the pain along with many side effects like drowsiness. I haven't tried it and will remain that way until I have seen the vascular surgeon and what he says might help me. That whole approach is to study the veins efficiency or inefficiency on blood flowing back to the heart for reoxygenation (my choice of words). My cardiologist did the referral and was very upbeat about the potential success of the vascular surgeon's diagnosis and treatments. Thanks for taking the time for sharing your experiences and thoughts. We're all in this boat together.
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It is called, "Advanced Neuropathy" and I believe it is a stand alone clinic. I approached them for an initial consultation which was followed by a sensory exam and some balance tests. The exam cost $99.00. I returned for a third visit which was an analysis of my test results and the treatment program they were proposing. We have decided to hold off on the Neurology treatment and first finish the treatment used by the vascular surgeon. It may be that that process fixes the problem and a Neurologist isn't needed.
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Are you sure your not mistaking this neurologist for a chiropractor? Chiropractors usually run neuropathy centres and sell 9000 dollar treatments. Kind of like the Nerve Doctors on youtube. Theyre not Neurologists but chiropractors. Ive never heard of real neurologists charging that or being poo pooed by the medical community as neurologists and neurology is a real practice and real doctors. Its just that they cant really do anything after they diagnose you.
They do scoff at chiropractors though and theres a reason why insurance sometimes doesnt cover them.
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1 ReactionThe "Neurologist" that I visited mentioned he was a chiropractor for 15 years before he jumped into Neurology. That seems to be a common migration. He didn't elaborate on the reasons for this change. Of all the medical doctors I see look down on the practice of neurology.
They refer to themselves as Neurologists even though they are not medical doctors. How is that allowed by licensing authorities?
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1 Reaction@banjoman
Chiropractors cant jump into neurology……its years of medical schooling in a real medical school to become a neurologist. Hes a chiropractor selling “treatment” for neuropathy a neurological condition. Neurologists are the key doctors to see for Neurodegenerative Diseases, neuromuscular diseases…..MS, AlS, Parkinsons, Alzheimets etc…..its specialized practice that takes more schooling then a general practioner. The thing is there is no cure for Neuropathy. Why would doctors look down on neurology? If you went to the Mayo clinic for neuropathy you would most likely be seen by a neurologist not a chiropractor. Chiropractors have commercials on tv selling expensive treatments…if they worked you would think this would be provided at a hospital and then there would be NO neuropathy. Since there is no cure I compare it to a desperate cancer patient trying anything ….some chiropractors claim to have cancer treatments too….
One of the top researchers in Neuropathy Anne Louise Oaklander associated with Harvard and MGH is a neurologist. You cant compare them to chiropractors who work on spines mainly. Anyways a real neurologist isnt going to scam you and sell you a 9000 treatment protocol which is probably some redlight or shockwave therapy that “promotes” circulation or stemcells. Again if it worked that would be the treatment a doctor would presribe instead of gabapentin, lyrica etc….now if you have neuropathy from an autoimmune disease you can recover with IVIG.
But you mentioned you are seeing a rheumatologist if I remember correct. So you are lucky because they can an do presrcribe IVIG for autoimmune diseases. So you just might be one of the lucky ones who has a treatment….if it is autoimmune related, CIDP.
But Id bet the farm the person offering the 9000 dollar treatment isnt a REAL neurologist.
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Helpful -
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2 ReactionsIf those chiropractor cures worked I wouldnt have neuropathy and would have my life back. When I was in the hospital for over a week bone of that snake oil was offered to me….but weirdly I can walk into a chiropractors office with no referall open up my wallet and be cured 10000 dollars later. Well I wouldnt be walking as I can barely walk anyway
Thanks for the clarification. When they brought up their proposed treatment package for $9,000, with no guarantee of success we said, "no thanks". Unfortunately, the pains still there and I'm not content with that. My cardiologist is aware of the circulatory issues and nerve pain concentrated in one big toe and has referred me to a vascular surgeon who is not an ex chiropractor. Fingers crossed on that one.
-
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Helpful -
Hug
2 Reactions@banjoman
Good luck and sounds like your in good hands. Also hope your issue is not neuropathy and sounds like theres a good chance it isnt.
To be diagnosed its usually an EMG and a nerve conduction study that can hurt a little bit and those balance exercises you mentioned. I had to get those tests from a neurologist. And punch biopsy for Small Fibre neuropathy.
I suppose a chiropractor may do those tests at least the balance one too so they can diagnose but its the cures they sell that annoy me. I was led into quite a bit of false hope when I got this disease…… I am also no expert but just basing what Ive been told by doctors and looking at medical documents online ever since diagnosed.
If you do end up with neuropathy Im afraid if you dont have a treatable neuropathy you will find yourself having to treat it yourself and decide on those expensive treatments offered. Thats why youll see people asking about supplements, red light therapy and so on. And then its always “it might work for some but not everybody”.
So you end up trying things and if that red light therapy works then great!
The most I was offered was gabapentin and “dont lose hope.” I dont mean to be doom and gloom but thats been my experience and what I was told by other patients when this first started. I didnt really believe it at first but do now.
I should mention I dont like the neurologist Im seeing but Im putting it down to he cant do anything kind of like if I had a terminal cancer diagnosis. I think Id be getting more help if I had cancer to be honest. Ive seen 6 different doctors before landing with that neurologist so Ive kind of resigned to my fate.
But theres people here like John who have lived with this alot longer than I and may have great advice so this is just my thoughts as Im not a healthcare worker so just my opinions of what I have gathered
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2 ReactionsFrom what I've read gabapentin is a band-aid approach which masks the pain along with many side effects like drowsiness. I haven't tried it and will remain that way until I have seen the vascular surgeon and what he says might help me. That whole approach is to study the veins efficiency or inefficiency on blood flowing back to the heart for reoxygenation (my choice of words). My cardiologist did the referral and was very upbeat about the potential success of the vascular surgeon's diagnosis and treatments. Thanks for taking the time for sharing your experiences and thoughts. We're all in this boat together.
-
Like -
Helpful -
Hug
2 Reactions