hi ,
I have cervical myelopathy , axonal sensory motor neuropathy and osteoporosis
I’m always in pain but try to keep as active as I can.
I’m particularly interested in any one else with axonal sensory motor neuropathy as it’s very lonely having a condition which so far nobody has commented on.
Hopefully someone will reach out to me
Thank you
I am sorry about your diagnosis. May I ask if your battle is GAN or from another source?
I have had DCM Degenerative Cervical Myelopathy for the past 8 years. I have gone through 9 operations.
Frankly, I can't possibly imagine what you might be going through. I will check with our Myelopathy Support group to see if anyone has been diagnosed with the same, perhaps we can connect you with another.
Have you been operated on for Myelopathy?
Let me see if I can find someone in our group.
Sheila Dugan
Hi Thank you for replying , the neurologist who diagnosed my condition has no clue what caused it. It’s not GAN it started about 3years ago with numb toes which steadily started to affect my legs. I have constant buzzing and tingling and I have lost my reflexes in my legs.
I am very cross about my cervical myelopathy, no ever doctor said I had myelopathy, (even though I asked for my diagnosis) I had many MRI scans from 2010 the doctor said one minute I would need an operation and was booked in twice ,then the doctor changed his mind and said physio will do,
In other words I was fobbed off.
Consequently I have had all the symptoms without treatment all these years ,it’s been a nightmare. I have just got on as best as I could.
It only since I was diagnosed with neuropathy that the doctor has said in the neurology department, oh you have had this condition since 2010. When I said no the neuropathy only started 3years ago the doctor said well you have had cervical myelopathy since 2010.
So basically the doctor in orthopaedics after 4 MRI scans left me to get on with the condition.
Sorry a bit long winded , yes It would be very good if someone else had any information I would be very pleased.
Thank you
Hello there, I bet you thought I forgot about you. I have not, I too ha e Cervical Myelopathy and have had a couple of procedures done ovee the past 2 months.
I have asked within the myelopathy charity organization if anyone has the same condition and was actially pointed to some documentation. Here is the link:
pubmed.ncbi.nlm.nih.gov/161...
I will ask pur Facebook group as well.
Sheika
Hi Sheila
Many thanks for getting back to me, it is appreciated. I have had a look at the link and will try to get more information.
If anybody else has similar symptoms I would be very glad to hear from them, especially if they have neuropathy and myelopathy. Any information or advice is very welcome.
Thank you June
Hi there, I know how you feel about being fobbed of I can relate to it as I was the same and when I got diagnosed properly it was to late . I have a lot of neuro problems numbness in my hand and feet . I have had two ACDF C3C4C5 OPERATIONS to try and stop progression. You are definitely in the right place on here for advice .
Thank you for replying to my post, I too have got very tired of being fobbed off, it’s often too late once the damage is done. It appears that late treatment via operations do not appear to have good results.
It’s a shame as late diagnosis lead to much pain and discomfort, which may have been alleviated if the treatment had been offered earlier.
I am finding reading and getting advice from this forum very helpful, thank you
Hi there, i hope you get sorted.
I didn't get any feedback. Is this condition called anything else? As for being fobbed can you go through private doctor? Not sure of the cost. But I would certainly see about a second opinion
Neck /shoulder pain, tingling fingers, strange headache!
Seasons Greetings