CMT runs in my family and I'm currently going through the diagnosis process. My symptoms are: Right foot drop - especially when fatigued (walking too far, excercising, etc.); pain in both lower legs; poor balance; high arches; starting to get hammertoes (both feet); either have to use hip muscle or lift my leg with my hand to get into car or cross right leg over left; if sitting on floor, can barely lift right leg up but can still lift left leg.
Right now the neurologists are not leaning towards a diagnosis of CMT. One of the reasons is because it is a bilateral disease and my symptoms are much more prevalent, at this time, on the right side. In addition, they say there was little indication of nerve issues found from the EMG, nerve conduction, or manual tests. My right leg did show smaller muscle mass during an ultrasound.
I had a skin biopsy (right leg only) and they found there is an issue with my small muscle fibers. I was told that I will have pain but should have no other problems from this issue. When I asked about the foot drop and other symptoms which brought me to the doctor in the first place, they decided to have me tested for myasthenia gravis. I know I'm not a doctor, but lower leg issues is the only symptom I have that is related to that disease. It seems like a waste of money to be tested for it.
Has anyone had symptoms start on one side or know of someone who has? There have been at least 5 people in my family who had or have CMT with a high possibility of two others. It doesn't seem logical, considering my symptoms, that I have something else.
I would very much appreciate any feedback on this.
I have atrophy (calf), drop foot, hammertoe and high arches and am declared to have CMT but it only affects my left leg and foot. I have never heard that CMT is always bi-lateral. Don't know much more than this. I hope you will get a definitive answer soon.
Most of the problems I had began on right; sometimes it seems to favor the side of over use; So, if you are right handed or favor your right leg leading and being the most weight bearing it can cause the disease to progress, If you have CMT in family it most likely is CMT. CMT affects and progresses in its own time and unique way. I too had been told I had Myasthenia Gravis MD b/c its onset seemingly was in my adult years and sudden. But, after sharing my childhood, and the difficulties back at the time was accepted a just clumsiness and, laziness, it had been with me from birth but was just explained away. My right eyes has to have a stronger scipt as the eye is suffering more astigmatism b/c it has had over use due to left eyelid droop the right eye is dominant and over worked.
From what I understand, CMT is bilateral. But that does not mean that symptoms always apply to both sides. I have been diagnosed with CMT from nerve conduction studies, but some symptoms are worse on one side. In recent months I have developed slight pain in my left hand but not in my right. My foot drop appeared first in my left foot. So CMT should certainly not be ruled out because your symptoms are on one side. As far as the other possible diagnoses are concerned, I don't know anything about them.
Welcome to the discussion boards! I'm so glad that you have reached out to the group. I personally do not have CMT, I'm just a helping hand here, but I'm sure that you will hear from many here who do have CMT.
I hope that the genetic testing will tell the story and give you a solid diagnosis. Besides info, this is a good place to compare notes with others, and most importantly to cope,
I had to look up Myasthenia Gravis, so I'll share that info with others
I see that this involves the thymus gland, so it seems that many different Doctors could be in the mix here. It is an autoimmune disease, so a Rheumatologist could be of tremendous importance, as would an Endocrinologist, as the glandular specialist, then there is the nerve involvement which points you to a Neurologist. It seems as though an eye specialist could also be of help to you.
Nothing much showed up on my nerve and muscle tests either, not even the Sciatica in my left leg, but it's good to know that nothing drastic is happening there, which is certainly a relief to both of us.
Sorry, I got my wires crossed here, it's was CM who posted about the Myasthenia Gravis.
I'm surely not the expert here, but it seems as though having such a strong CMT presence in your family is too important to ignore. My autoimmune diseases are carried on my mother's side as well.
My left leg and foot are very much effected. Both arms and hands are also a problem. As others have said,sometimes my right leg will have symptoms.i am noticing that my toes on my right foot are beginning to turn under like the left.i agree with CM. I ,too had signs from very early on. All were attributed to laziness or not trying. I hope you get a diagnosis soon. It took a long time for me. They based mine on nerve conduction studies. Take it day by day! Karen
One thing that is very consistent with many who have CMT; the disease showed progression with an accident; injury or extra stress such as a death in family or something traumatic; So, onset can seem sudden, but it's the bouts of progression that are triggered that makes us question why "all the sudden". I had a fall that triggered my eventual diagnosis. But, after learning about it , then related so many ? of my early childhood, teen and young adult years of my "oddities". So much was explained after realizing I had been affected my whole life(from birth) but I and others explained my symptoms away easily. It was not until the problem of the fall, and not recovering (with lots of treatments and therapy) that made the doctors start telling me something else was wrong. You might ask yourself if the CMT is only affecting one side maybe due to an injury a fall or some kind of possible damage to the nerves or muscles on that side. I had actually walked into a brick wall with my head turned (neck pain) and months later the spine (axis bone) was damaged and then showed up causing me to fall. Sometimes, it's the" straw that broke the camel's Back" , one thing did not set it off but a series of events that went ignored until suddenly your body's tolerance was over the top and shuts you down. Lots of things go unnoticed as related and secondary issues but then after diagnosis you recognize there was things going on all along!
One thing that is very consistent with many who have CMT; the disease showed progression with an accident; injury or extra stress such as a death in family or something traumatic; So, onset can seem sudden, but it's the bouts of progression that are triggered that makes us question why "all the sudden". I had a fall that triggered my eventual diagnosis. But, after learning about it , then related so many ? of my early childhood, teen and young adult years of my "oddities". So much was explained after realizing I had been affected my whole life(from birth) but I and others explained my symptoms away easily. It was not until the problem of the fall, and not recovering (with lots of treatments and therapy) that made the doctors start telling me something else was wrong. You might ask yourself if the CMT is only affecting one side maybe due to an injury a fall or some kind of possible damage to the nerves or muscles on that side. I had actually walked into a brick wall with my head turned (neck pain) and months later the spine (axis bone) was damaged and then showed up causing me to fall. Sometimes, it's the" straw that broke the camel's Back" , one thing did not set it off but a series of events that went ignored until suddenly your body's tolerance was over the top and shuts you down. Lots of things go unnoticed as related and secondary issues but then after diagnosis you recognize there was things going on all along!
I have atrophy (calf), drop foot, hammertoe and high arches and am declared to have CMT but it only affects my left leg and foot. I have never heard that CMT is always bi-lateral. Don't know much more than this. I hope you will get a definitive answer soon.
Thank you, JohnCary. It's hard to believe that the neurologists are trying to rule out CMT when I hear of others with symptoms affecting one side more than the other.
JohnCary said:
From what I understand, CMT is bilateral. But that does not mean that symptoms always apply to both sides. I have been diagnosed with CMT from nerve conduction studies, but some symptoms are worse on one side. In recent months I have developed slight pain in my left hand but not in my right. My foot drop appeared first in my left foot. So CMT should certainly not be ruled out because your symptoms are on one side. As far as the other possible diagnoses are concerned, I don't know anything about them.
Welcome to the discussion boards! I'm so glad that you have reached out to the group. I personally do not have CMT, I'm just a helping hand here, but I'm sure that you will hear from many here who do have CMT.
I hope that the genetic testing will tell the story and give you a solid diagnosis. Besides info, this is a good place to compare notes with others, and most importantly to cope,
I had to look up Myasthenia Gravis, so I'll share that info with others
I see that this involves the thymus gland, so it seems that many different Doctors could be in the mix here. It is an autoimmune disease, so a Rheumatologist could be of tremendous importance, as would an Endocrinologist, as the glandular specialist, then there is the nerve involvement which points you to a Neurologist. It seems as though an eye specialist could also be of help to you.
Nothing much showed up on my nerve and muscle tests either, not even the Sciatica in my left leg, but it's good to know that nothing drastic is happening there, which is certainly a relief to both of us.
Thanks, Karen. I hope for a diagnosis soon, as well. People always ask me if I'm limping and I would like to be able to give them a reason rather than, "my foot is bothering me" or "I may have a hereditary disease". :) Karen said:
My left leg and foot are very much effected. Both arms and hands are also a problem. As others have said,sometimes my right leg will have symptoms.i am noticing that my toes on my right foot are beginning to turn under like the left.i agree with CM. I ,too had signs from very early on. All were attributed to laziness or not trying. I hope you get a diagnosis soon. It took a long time for me. They based mine on nerve conduction studies. Take it day by day! Karen
One thing that is very consistent with many who have CMT; the disease showed progression with an accident; injury or extra stress such as a death in family or something traumatic; So, onset can seem sudden, but it's the bouts of progression that are triggered that makes us question why "all the sudden". I had a fall that triggered my eventual diagnosis. But, after learning about it , then related so many ? of my early childhood, teen and young adult years of my "oddities". So much was explained after realizing I had been affected my whole life(from birth) but I and others explained my symptoms away easily. It was not until the problem of the fall, and not recovering (with lots of treatments and therapy) that made the doctors start telling me something else was wrong. You might ask yourself if the CMT is only affecting one side maybe due to an injury a fall or some kind of possible damage to the nerves or muscles on that side. I had actually walked into a brick wall with my head turned (neck pain) and months later the spine (axis bone) was damaged and then showed up causing me to fall. Sometimes, it's the" straw that broke the camel's Back" , one thing did not set it off but a series of events that went ignored until suddenly your body's tolerance was over the top and shuts you down. Lots of things go unnoticed as related and secondary issues but then after diagnosis you recognize there was things going on all along!
My left leg has always been far worse than my right. Initially at the time of my diagnosis my right leg seemed normal & like it was just an issue in my left . After 30 years my right leg is having problems as well, though still way better than the left. However , the neurologist told me years ago when I thought my right leg was normal that the tests showed neurologically both legs were equally severely affected & he had no idea why my right leg was functioning as well as it was. He thought some sort of kick reflex was somehow compensating in the right side. Good luck!
This did not happen to me. I wondering about genetic testing to help clear things up for you. I had one done in 1997. It was costly at that time but MDA paid alot of the fee.
I’m in the exact same situation as you, dude. I’m only affected on the right lower leg, calf totally gone now ten years after my first diagnosis. Was told Guillain Barre at first but I relapsed within two months of having IV infusion, then a year later and a few months again after that. Eventually told CIDP but from what I can see, that is also predominantly symmetrical. Also have high arch and drop foot. Permanent limp, gets progressively worse when walking until I’m walking like a drunk cripple. My toes also clench almost like they’re trying to grip the floor like a monkey!
How long since you were diagnosed? What other symptoms do you have?
Hi! I was diagnosed with CIDP 9yrs ago… for the past 2yrs I have dropfoot in my left side and severe muscle wastage in both calves…and bad pain in my left hip and shoulder, I have treatment IVIG every 6 weeks for 2 days which really helps the foot from dragging😁