[JB63]

Hello everyone I was recently diagnosed with motor neuropathy, a long a frustrating year, as most of you have experienced. I have had all the tests, all neg including LP. Except for elevated ESR, herniated cervical, thorasic, and 2 lumbar discs, and EMG which shows axonal damage and polyradiculopathy in the legs (right grear than left), arms were normal. I am being followed by docs that are highly regarded in this area and practice at a large teaching hospital. Unfortunately what they have in smarts, they lack in people skills. Getting information from them is almost impossible. I ask a question, they tell me don't worry. Just plain vague.

I started around 1 year with electric like shocks in my rt hip, was told it was my arthritis. Then severe shooting pains in my back down the back of both legs with ankle weakness on the right and got tired when walking 6 months after that. I was told I needed a hip replacement.
3 months after that I get the ortho appt and By now I could not move my rt foot side to side and was tripping over it and I have fasciculations in my legs, can't do stairs without extreme difficulty. He told me I had MS or a brain tumor (but only after mri-ing everything from the waist down). So finally to a neuromuscular specialist who recognized foot drop, but it took over a month to get the appt. Good news is no MS or Brain Tumor, MND is "doubtful and unlikely" and I thank God for that.

My med history: Breast cancer and chemo 1996, breast cancer (new tumor not metastses) 2005 for which I received adriamycin, cytoxin and 12 cycles (yes that is a large dose) of taxatere. 2008 Graves disease, sever and out of control with 2 thyroid storms and free t3 levels over 1000. Very sick, had leg weakness, could not do stairs, fell, could not get out of a chair for 6 months. Finally had a total thyroidectomy in 2010. I have had 7 documented cases of hepes zoster in 10 yrs.

My questions: Isn't pain a sign of sensory neuropathy? I am told that I do not have CDIP because it did not show up in my spinal fluid or blood, is this an absolute?. MMN is ruled out because they say I have no sensory involvement and that it starts in the hands. Herpes Zoster was ruled out as it wa not in the spinal fluid, but I am being treated with Valtrex for 2 weeks. The only plan I am given is to have PT take valtrex and return in 4 weeks. Maybe then the doc will consider a trial of 2 doses of IvIg.

Meantime, I started losing my balance, but figured out it was from the AFO's I am trying to adjust to. I hope the gait training anf PT will help. I find that if I can do a heel toe gait, I am less fatigued when walking.

Please do not think I am wallowing in self pity, cause I am fine and adjusting well to the disabilities. It is just that when I ask my docs questions about the fasics (like what are they) or express that I am worried and anxious at times about what is happening to me, I got told "Why are you worried, you are the same as last month, you have nothing to be anxious about." Well.... I used to be able to walk unassisted and now I can't. When I was being worked up and was frightened by it all I was actually told by the other and this classic answer of the detacted doc, "anxiety is not a symptom of the disease, it is chemicals in your brains reacting, don't worry about the anxiety."

I still have the hip and back pain. I also would like to know if anyone else out there has motor neuropathy and how they are doing. I am 63 yrs old and a retired critical care, ED nurse. I am married and have a son.

[daniella]

Welcome to the boards though I am sorry for all you have and continue to go through.
It is good you have doctors who you feel are educated though sorry they lack communication skills. Do you have your records? I would get them and keep them in a binder. Also with the doctors notes. Then maybe you could ask specific questions from those things stated?
I can understand the worry because I live in that and causes anxiety. I see a psych to help with that and may go back to therapy. Have you thought of that?
I am not an expert like some on here of causes etc but did your doctors feel the past with cancer etc is impacting now with the neuropathy? Have they refered you to a pain doctor? I hope that you find the PT helpful and get some answers/relief

[glenntaj]

It does sound, though, as if some other areas should be explored to determine what exactly is causing this. From what you've written, the symptoms could be coming from the spine problems--is there any cord compression? You do mention radiculopathy of the legs--that implies there is some pressure on the nerve roots at some level of the lumbar and/or sacral spine; do any of your imaging reports mention foraminal narrowing or impingment at any levels there? (The foramen are the spaces through which nerve roots pass through as they exit/enter the cord--"radic" is root in Latin.)

And, to examine another possibility, plenty of anti-cancer agents are neurotoxic.

Moreover, you may have an ongoing post-herpetic neuralgia with all those herpes zoster attacks, and those tend to occur within dermatomal distributions similar to radiculopathies.

Is suspect your neuropathy may be multifactoral, with one contibuting factor superimposed on another--and only really detailed analysis and testing might tease out these factors. With motor symptoms, first thing I'd really look at is the spine, though--do you have any recent imaging reports you could share?

[JB63]

Originally Posted by glenntaj

It does sound, though, as if some other areas should be explored to determine what exactly is causing this. From what you've written, the symptoms could be coming from the spine problems--is there any cord compression? You do mention radiculopathy of the legs--that implies there is some pressure on the nerve roots at some level of the lumbar and/or sacral spine; do any of your imaging reports mention foraminal narrowing or impingment at any levels there? (The foramen are the spaces through which nerve roots pass through as they exit/enter the cord--"radic" is root in Latin.)

And, to examine another possibility, plenty of anti-cancer agents are neurotoxic.

Moreover, you may have an ongoing post-herpetic neuralgia with all those herpes zoster attacks, and those tend to occur within dermatomal distributions similar to radiculopathies.

Is suspect your neuropathy may be multifactoral, with one contibuting factor superimposed on another--and only really detailed analysis and testing might tease out these factors. With motor symptoms, first thing I'd really look at is the spine, though--do you have any recent imaging reports you could share?

First of all thank you for you interest and input and your very prompt reply.
Multifactoral sounds reasonable. Many things piling up until the scale just tips over. I will ask for a copy of my records.

I only know that the lumbar spine had mild stenosis and 2 mild bulges, cervical and thoracic have moderate moderate strnosis, The herniations I could see on the mri image, and believe me, I usualy can't tell anything on an mri, but I do not know the degree. I suspected some cord involvement because I have mild hyperflexia
which the doc says could be from the cervical and thoracic herniation. One doc wants to look more closely at the discs, the other is vague when I ask about it. Negative plantar reflexes, thankfully. When I was in my 30's I developed calcifications in my thoracic spine and t10 was completely fused. The arthritic disease continued leaving me with what was decribed as the worse bone spurs see by a rheumatologist I refered to 5 yrs ago.

I have received extensive testing. One of my docs is the head of neuromuscular disease at this major teaching hospital. The other is the best doc to get an EMG exam from. Both doctors are also psychiatrists. With their credentials I know I have the best diagonsticians. They are considering compression as an issue. The EMG/NCV showed axonal damage, inflamation, and polyradiculopathy in the L-S spine.

I want to call my oncologist to ask if this could be from taxotere, but I do not want him to feel threatened or think I am complaining about my treatment. I owe him my life.

So my biggest problem really isn't so much as to why this happened. It's the fatigue when I try to walk that scares me.

[JB63]

Originally Posted by daniella

Welcome to the boards though I am sorry for all you have and continue to go through.
It is good you have doctors who you feel are educated though sorry they lack communication skills. Do you have your records? I would get them and keep them in a binder. Also with the doctors notes. Then maybe you could ask specific questions from those things stated?
I can understand the worry because I live in that and causes anxiety. I see a psych to help with that and may go back to therapy. Have you thought of that?
I am not an expert like some on here of causes etc but did your doctors feel the past with cancer etc is impacting now with the neuropathy? Have they refered you to a pain doctor? I hope that you find the PT helpful and get some answers/relief

Thank you for your quick reply. You are so right, I need to get my records. I need to feel empowered again and get some control over my life. I need to have input and understanding of this thing. When I had cancer, I was part of the treatment team, not a bystander. Also just to make myself clear, I know I am very, very fortunate to have top docs in this field. I have read on this board that many do not have access to specialists.

I want to ask my oncologist about the long term effects of taxotere. I know studies are being done. I just do not want him to feel threatened or that I am questioning his judgement. This man saved my life, he did the right thing. My neuro docs did all the tests for cancer and it has been ruled out. Thank God once more.

Reality check here. Right now my biggest problem really isn't why this is happening, but coping with the fatigue I get when I walk. I am fine when on my butt, but on my feet is a challenge.