PN - Questions for doctor (Warning - Long post)

[Guest guest]

My husband is 57 years old and has been diagnosed with peripheral neuropathy.

He works a highly physical job, working at heights, around loud machinery, and

working with very heavy objects.

About 5 years ago, he started having tingling in his right leg. This tingling

has progressed up his leg and into his other leg at times. He is now noticing

that there are times when his hands and

arms " Don't feel right – tingle " . He also has sporadic muscle spasms in his

legs in the evening. He does not have diabetes.

He also has hammer toes. At this point, he feels that the news is bad (possible

MS) and the doctor is taking his time in telling us what is really going on –

kind of to soften the blow.

Here is the long version (please feel free to skip to the questions

below, if you would like).

A local doctor diagnosed my husband by using the EMG approach, as well as some

blood testing. His diagnosis was " Abnormal study consistent with a diffuse

axonal and demyelinating motor and sensory neuropathy " . The blood results came

back normal. The doctor seemed thrilled that he came up with the diagnosis of

PN.

Well, our primary physician felt that we needed more answers and

contacted a highly specialized doctor in Sacramento (about 2 hours

drive for us). Thank goodness that this specialist was interested in my

husband's condition and was willing to take him on as a patient.

First visit – The doctor felt strongly that my husband had

a form of genetic PN. He had no reflex when his knee was tapped in

either leg. There is also muscle atrophy in his ankles and feet.

The doctor asked my husband to close his eyes and stand on one leg –

no go. Then the doctor asked him to close his eyes and walk a

straight line – no go there either, however he could do the walking

and standing on one leg with his eyes closed. Husband asked if it

was safe to work at dangerous heights. The doctor replied: " I hope

that you have your life insurance paid up " . Husband didn't take this seriously.

Second visit – The doctor used a newer form of technology

EMG machine to test for responses, as well as nerve conduction

tests. The doctor was surprised at the findings and asked husband to put out

his right hand to be tested. Well, it seems that the

responses on his right hand were worse than the responses in his

legs. The doctor also said that the results that he was coming up

with didn't agree with the specifics that the first doctor stated –

yes, there is PN, but a different " type " . The doctor also ordered

many forms of blood testing that we will get the results at the next

appointment.

Now speed up to the current period. One the 19th, we have

an appointment to see the specialist for the results of the testing. The doctor

has also ordered an MRI of the spine to be done a few hours before the

appointment and we are to carry the results with us to the appointment.

Well, here are some questions that we plan to ask:

1. The fact that my husband has scoliosis – does this play a part

in this diagnosis? He had scoliosis as a child, so this is not a

recent condition.

2. Hearing loss – could it be caused by PN or by work?

3. He had shingles in 2005. Could this be related?

4. Was the comment about making sure his life insurance was paid

in full serious? Is it truly dangerous for my husband to continue to work at

this time?

5. If the doctor feels that it is truly genetic, are there tests

that could be performed that could pin down this fact, possibly help

firm up the diagnosis, and help form a plan of treatment?

We had originally planned to retire, buy a 5th wheel, and travel

around the country until we found a place that we wanted to live. He is now at

the point that he wants me to be happy where I live if his life is to be

shortened or changed to a great degree. This would mean moving back to my home

state of Texas. I want him to be truly happy and do what he actually wants to

do.

Here is my question of you. Could you please help me to formulate

more questions for the doctor? I want to try to cover all of the

basis that we can.

Again, please forgive this long post. I just want to help my husband find out

what is going on and what we can to make his life as comfortable and productive

as possible.

Thank you so much for listening!