If you've followed my story here, you will have noted an unnecessary spinal stenosis surgery a year ago....6 months rehab just to walk,,,The bozo that did it wanted to put up a spinal cord stimulator up my back to alleviate pain, BUT this would NOT help numbness---I refused.......This was last April, May...In the meantime, I saw a podiatrist, and orphopedic Dr....NO mention of CMT from either one.....I schedule with a new neurologist in town....As I wrote the first looked at my first EMG , said it was terrible, and sent me to a major hospital for an over an hour EMG....This new neurologist, upon my first visit there, in only 5 minutes, had me take off a shoe and quickly said----"You got CMT as evidenced by higher arches and some hammertoes...The new EMG will clarify it!"....Well, got it done!!....My neuro's secretary called me with the EMG results....She started by saying something about a pinched nerve(s) at LK4-5....Then let me talk to the Dr....He said, that I tested negative for a couple types of CMT and regardless, no further testing for the type, because there's no cure...But that was when.I wasn't scheduled to see him again until January....With my numbness getting worse, and now involving my left foot too, I read that the neurologist was leaving and a new Dr. would take place....So, instead of waiting till January to see him,I got a quick appt and got in today....We started talking CMT, and she looked at me and said "WHO told you that you had CMT?.....I SAID THE LAST NEUROLOGIST HERE BEFORE YOU....She said you have idiopathic neuropathy and a bunch of other words and some words that were too medical to me..I'm going to get a copy!..She showed me the emg findings, and it ruled out CMT because of something about HOW the damage to the nerves was being done, Well I told her that the Dr. before her said I had CMT.....She said, NO!!-----YOU DON'T......She added----I WOULD BELIEVE THE DR. FROM THE MAJOR HOSPITAL WHO DID THE EMG,,AS HE WAS TRAINED AT MAYO CLINIC........There is absolutey nothing they can give you for this, just numbness and heaviness, and it's slowly progressing...She was extremely friendly, great knowledge, low key and very compassionate....Said to just keep moving and out of bed....Again, there is nothing for just numbness!So I posted on here earlier that I got CMT..Now I dont!!!!...Now what scolds me is that he HAD a copy of the emg and read what it said, but when I asked him about it on the phone he said.."no question, you got CMT!"..With the diagnosis in front of him, yet lied......90 percent of the Dr's I know are incompetent....Today may have permanenty ended my association with any Dr.....It etsted negative for all the vit. deficinies, diabetes, bloodwork is fine, and they can't find a cause or treat the symptoms...I did test negative for CIDP...Have no idea what to do now....God bless all!!.....Chuck
You know very well that no one here wants you to have CMT. There are a few here that are not diagnosed, a few who have waited 65 and 67 years for a diagnosis. I don't have CMT, but know the high arches, hammertoes, and your gait are all very strong indications of the disease.
Please know that you are most welcome to stay here with us, it may take a while for you to know absolutely for sure, so no sense of rushing off, when you have met so many great people here!
I do hope that someone can put your questions to rest, and give you satisfactory answers.
Wishing you well,
I agree with SK. We all hope you haven't got CMT. It is an insidious disease. But welcome you to our group regardless. We all know what it is like to have it. The worst part when finding out about having it, is the fact that there is no cure (as yet). We all wish you well and I am sure it won't be too long before you find out for sure either way.
Thank you for your kind words and encouragement....Today, and I should have done this yesterday, I'll get a copy of the second EMG done from the Dr. who trained at Mayo....It is so sad and more that we live in a world with so many technological advances, medical breakthroughs and more, and I would have never even heard of it had it not been for the second neurologist, and he only took a stab at it by sight...Again,it goes further to a true, long detailed EMG that supposedly says NO.....I can't believe that the second neurologist, having the diagnosis directly in front of him, and being the one who diagnosed me by sight, would tell me on the phone that I had it, KNOWING that the EMG he sent me for said otherwise....Perhaps he still believed it and or didn't want to look bad....No question that this neuropathy is getting worse...I have had 4 accupuncture treatments in the last 4 weeks....Ill keep all of you posted on that....Yesterdays Dr. told me that 10 or so blood tests that her predecessor had done all were negative....B vitamins, diabetes etc., with the only one, and that just being on a low side was my red blood platelets....Mine was 138, and the norm was 150-400....Actually, this is like a 'dog chasing it's own tail!'....No, I won't leave here....I've always been the type of person who relentlessly pursues something until he finds out at least something....And to the poor, frustated lady on here who went 20 years undiagnosed until her hub and chiropractor figured it out, I can only say, that I truly know only a bit of your frustration now, and God bless you for all that you've suffered....Thanks to all of you again....But I'll leave you with a good one....A buddy of mine went to get his results from a Dr., and these tests included an x-ray of his lungs....The Dr. started by asking him first at what point in his life did he get shot by a gun....My friend said "never!".....The Dr. showed him the x-ray and there it was, a bullet...The Dr. insisted on him backtracking in his mind to any place where there might have been shootings, arguments etc.... He again said "no," was never in the service either..Finally, it was solved as my friend noticed he had the chart of another person...Amen!
I hear you chuckk, my husband got the wrong PSA test results for prostate cancer, his were actually much worse than the ones he was presented with. My grandmother had a total hysterectomy because of getting her mixed up with another patient!
It happens, mistakes will always be made!
I am relentless too, you really do have to be!
Peace of mind is priceless, I hope you can have some soon!
Take good care! We are glad to have you here with us!
Chuck, I really like your attitude. Continue to be persistent and keep asking questions. I was first told by a podiatrist that I had"an extra bone in my foot". Gave me custom made inserts and said, these may help. They did for a while, my left foot continued to turn to the outside and finally the inserts did not help anymore. I went to a neurologist and he said " I can't help you, if I was young and dumb, I might try something" and he referred me to another neurologist. This doctor looked at my x-rays, and different tests I had undergone, then looked at my feet, held my left foot up and said, "you have CMT". Went through some surgery to try to re-position my foot and it help me get through 10 years that would have been much more difficult without the surgery. Keep hanging in there and keep us updated. I really appreciate this site and all the people on it. GOD bless!
There is a positive way to determine in most cases if you have CMT and that is by A simple DNA test which comes from a simple blood sample.
We all agree that you should not we hope you do not have CMT, But for the doctor to act like thisIs uncalled for.
Many people on this group will relate to having to explain to their doctors what CMT actually is.
I suggest that you make a complaint about the behavior of the doctor… everyone has a supervisor… and then perhaps consider changing doctors.
This doctor clearly does not have knowledge or sensitivity treat people with severe problems. Especially as it seems that she yelled at you.
Perhaps you could suggest, and you'll have to fill a out permission slip, Probably with both doctors, So that they will dare to talk to each other about you and ask her to defend her disagreement with the previous doctor.
I worked with the top doctor in pain medication at Cedars-Sinai, And when I found out that he thought he was God, and he was treating me thoroughly inappropriately, I simply went to a new doctor.
I do hope you have reasonably good insurance, Has anyone has CMT needs very good insurance, And quite frankly Medicare A, B and D are very good insurance chronic diseases.
Hopefully you have not migrated to any part of Obama care or attempting to secure Medicare disability Insurance.
That's my two cents from someone with CMT X1
Thank you again Eric and Vet....AND THANK ALL OF YOU AGAIN....Such nice people...
I went and got my EMG today....This is the summation from the lab Dr. there who is also head of the Neuro. Muscular Dept. at WVU....
There were three boxes of numbers...MOTOR NCS....WAVE.....AND NEEDLE EMG......All of the numbers and categories and areas tested I have no clue what they mean....But there are tons of them....It took over 1.5 hours I believe to do the testing.Here is the IMPRESSION--------The electrophsyiological evidence is most consistent with mildly active chronic bilateral S1 and right L5 radiculopathies super imposed upon a generalized peripheral neuropathy....A moderate right median neuropathy at the wrist(carpel tunnel syndrome) cannot be excluded....The findings are not compliant with a severe demyelinating neuropathy such as CMT1A....Clinical correlation is advised....
So, I assume that the spinal stenosis surgery that I had last year left, or was never taken care of, is the reference to S1-L5 leftovers....And 'that' reference is on top of idiopathic peripheral neuropathy, the main one, yet another and becoming worse condition ??????
I asked the new neurologist if trying to take care of the S1-L5 problem would alleviate some of the numbness....And she said "probably not!"....Well, I do know that CMT has a CMT2 also....I don't know if this rules out any of that or not....Forgot to ask...I did forget to mention to all of you that a nurse, in conversation with my wife and I prior to my surgery last year, after getting to know her a bit, said that NEUROSURGEONS think they are 'above the clouds,' and it's hard to even get them to say 'hello!"..................................God Bless all....So, in my mind, still puzzled!!....Accupuncture tomorrow....It's interesting....Will let you know...
Google "the Roll Model", if you wish to see my story publihed as a part of a new (November 4 publishing date) pain mangement book.
(I have no financial interest in the book, I am just profiled therein, and it is very relevant to us, as it sows how to exercise and reset many parts of our bodies' musculo skeletal and peripheral nervous systems)
Hang in there and hang with us b/c we are here to help with your symptoms whether you have CMT or not you do have some similar issues so we are a listening ear and if one dr. was wrong there still could be things they really do not know. I had a Dr. tell me I had something seriously neuromuscular going on then came back to tell me I was severely anemic which I'd already told him; it was if he'd never visited with me and I wondered if he had me mixed up with someone else. Same testing report he was supposedly looking at never addressed the issue of my PK levels (muscle enzyme wasting) but I had a copy and took to another Dr. and it jumped off the page at him. So, do continue to see others and find out what exactly you are fighting as there are meds and issues that might exacerbate your situation if you do not know.
Good Luck and try not to stress as with any neurapathy is worsened by stress.
Hi, Chuck. I'm not on much anymore but I read your story and wanted to tell you that I made an appointment at a muscular dystrophy clinic to find out for sure if I had CMT. They diagnosed me and sent me for braces. It's wonderful if you don't have CMT. Be careful that you don't start falling.
Thank you Martha!....I am sending prayers and comfort to you,,,,I really don;t know where to go now, because CMT also has a CMT2.....I tested negative for CMT1.....THE CMT2, from what I've read, is not as damaging as the CMT1....No dylemination...Good session at accupuncture today.....Will write more later....God bless all!.....Still going to chase, chase this!
I'm not the expert here, but there are also even rarer types of CMT. Here is info from NIH, and it lists ALL types of CMT, even the rare ones.
Hope this helps.
Wishing you well,
Chuck I can't believe all the trouble you have gone through. It makes my journey look like a piece of cake. I did not go to a neurologist for my diagnosis but rather a Dr. of Physical Rehabilitation who told me she worked with CMT patients and had diagnosed it before. My grandfather had CMT & out of 10 cousins, 3 including me have all been diagnosed with CMT2A & all of us had our symptoms show up around the ages of 55-60.
She did the nerve conduction test & said it clearly showed CMT--all you have to do is look at my charcot foot & see hammertoes &muscle wasting in my calves & foot + very high arches. My arms & hands are slightly effected. She sent me for an MRI of the back looking for some kind of onion bulb formation in the lower back often found in CMT cases. Low & behold it wasn't there but it showed I have Spinal Stenosis & she seemed more concerned with that than my cmt.
She basically said I was born with both conditions & except for maybe some small amount of physical therapy & some AFO'S there was nothing she could do for me. She actually said" I will see you in 20 years"
I am very lucky in that I have the numbness in my lower legs & feet and have lost some co-ordination in my hands yet I have zero, zilch pain.
I would imagine if I had pain I might seek some help but for now I am taking her up on her offer--hope to see her in 20 years when I an 85. That is how old my Grandfather with CMT was when he died.
Hope you get a diagnosis & the right kind of help & that goes for everyone with cmt. Hope they find a cure one day! All the best! Ken
Ken, you're 85 and this 'cool'? I love it!