Result from Neuro today
 

Been diagnosed with Peripheral sensory polyneuropathy today.

He did a nerve test with sticky things on my feet and up my leg.
Everything was pretty much normal, except a small change in my left foot which doesn't respond as well to the electrical signals. Around my feet around. He measure up further my leg but said everything was fine.

He wrote all the numbers down and showed me, and said it isn't much to worry about. Husband asked what is the worse case scenario, he said when l am old in a nursing home l may get unsteady on my feet and lose a bit of balance and have to work with a cane or some walking aid. Also said l may have burning hot feet here and there and sometimes stabbing pains. He said he hasn't seen that many people with PN with stabbing pains, mainly burning, tingling and restless let syndrome. All of which l have already had. He said there is medication, but he wouldn't recommend them as they have loads of side effects. He did give me a supplement to take, Cayenne. Said all the other supplements are a waste of time.
He said he doubts drinking has anything to do with it. I would have to be a heavy enough drinker to have the shakes when l stop drinking. He also said, l won't die from it, and l won't end up in a wheel chair and he has seen younger people than have this. As young as 12 years old.

I left his room, still with so many questions. One of them being, if l have this now, does this mean l will be unsteady at an early age? This worries me as l want to enjoy my life. Also, how does he know it isn't Auto NP? Are there any tests to rule this out? Also, is it normal for the PN symptoms to come and go? Since he has seen many patients l thought his experience would be useful in answering my questions. I mean after all he is the expert and deals with these kinds of things each day. I just felt rushed as usual.

Do you think its wise to get a copy of the nerve results? Are there any other tests he could have done?

I also bought my kneck X-Ray in he said to not have x-rays anymore as they are really bad for our health. This has scared me, as l have already had about 3-4 in my life over my body. He said MRI and Ultra sound is fine.
He said my x-ray look fine and my PN has nothing to do with it.

I now have to get my head around all this, l just want to live happy and healthy without pain.


He said if l wanted to in a few years l could have another test to see if its progressing. Is this to see at what rate its progressing?

Sue

Your experience is about typical. Not one smidge of effort to find out what is happening to you. Typical.

Surely he does not think you have CMT?
http://emedicine.medscape.com/articl...overview#a0101
This presents in children:
PN in twelve year olds... that is appalling if not hereditary.
(not everyone has hereditary PN --as a 12 yr old might have)
Hereditary PN is not the most common cause, but only one of many.

Looks like you have a "winner" there, (not).

No he does not think l have CNT. He doesn't,t think l.ve got much at all

Now want do l do for here in? What should l do ?

A question, have you heard of cayenne supplement?

Also, do you know if this kind of neuropathy gives hot hands as well? Should he have done a nerve test on my hands as well, as l suffer from heart palms?

Sue:(

What was your test called?

Sensory PNs don't usually show up in electrical testing.

To compare you to a 12 yr old (who most likely has CMT) is pretty stupid.

I certainly wouldn't go back to him.

You can look up cayenne on Google. But if you have a nightshade intolerance cayenne would set you off worse as it is a nightshade.

Usually PN is a result of another disease no? Diabetes, MS, lupus ??? im confused. Can PN be a disease all by itself? I thought it was a symptom.

I would write a list of questions, go back to MD and ask. If he dismisses you, seek a new one. :hug:

yes, medicines have side effects, but to leave you numb, buzzing, and worried wasnt fair. :hug:

Some PN is primary. Hereditary types, poisoning etc, nutrient deficiency.

Some is secondary, to something else. Hypothyroidism, autoimmune disease, diabetes.

Interesting article.

http://www.ninds.nih.gov/disorders/p...neuropathy.htm

And another.

http://medical-dictionary.thefreedic...ory+neuropathy

Some are inherited and some are acquired.

You could possibly benefit in seeing a neurologist who knows CMT. There are many other tests to rule that in or out. No one not even a doctor can tell you how you will end up. Your family history should be taken into consideration as well. Even then (your father or your mother) do not have to have symptoms that are evident. Sometimes CMT can be caused by a "rare" mutation. CMT can also be misdiagnosed such as having polio, Fredericks Ataxia, and a host of other diseases.

If indeed you did have CMT, and there are MANY types of it, symptoms could be evident when you are young, old or in-between. There is no cure/treatment for any type of CMT at this time. A person has to deal with the symptoms.

At the top of this forum check out PN Tips, Resources, Supplements and Other Treatments.

I am not really sure what the test is called. But he put these stickies things around my ankles and half way up my calf and put like electrical impulses and see if my toes were react, and then measure how far up the leg, whilst his nurse was recording them on computer.
He said l have very minor nerve damage, only slightly below the average in one foot and the other foot is normal on one portion but slightly out on the other. So he seemed to say it was all very mild.
He also got me to walk in a straight line barefoot and to close my eyes and stand still to see if l have any wobbliness. He people with PN in older years, tend to walk with there feet going outwards and unsteady on there feet, lose balance and may need a walking aid, but he said not to worry of me as l will be old in a nursing home by the time that happens.

He said NP is a degenerative condition. I suppose that means its normal part of ageing. My husband ate that up straight away. For my husband that was all sorted. He said to me, see that is normal part of getting older. I just can't except that. Its like my husband is already moving on. I don't' want him to worry about me, but l would like to just have his support and understanding at a time like this. He is normally pretty good, but l don't think he can handle this one.
We had a few nasty words with each other yesterday after the Neuro appointment. Husband just said to me, your not dying. Live you life now and don't think about the future, l know his right, but hard to do. The Neuro, didn't really give me much indication of how this is going to pan out for me, according to what he has experience in his profession. I just want to know what he has seen in his life. He just said, everyone is different. Well that helps heaps.

Sue

So you don't know much?

You don't know if you have motor damage? Or only sensory damage? Or even damage at all?

I'd get a copy of that report.

People with early onset, and you are very very early.... may have some self limiting problem. Meaning it might be an environmental thing, and pass. (viral infections for example).

I'd keep a log and live as clean and healthy as you can. See what develops in 6mos.

New shoes, activities that do not stress the feet and legs, as well as clean living... and you might see positive results.

The neuro placed conducting nodes on different sections of my foot and leg, sending current to make my nerves sensitive and reflex to create a reflex to it.
Depending on where the nodes were placed and checking the latency of my reflex reaction, they were able to determine that my reaction time was slower on my left foot than my right foot and my average reactions from ankle to foot, we're slower than average for both feet. Reactions from mid to upper leg, down to the foot were considered normal. This is the data they have used to diagnose me with sensory poly NP. Should l get a second opion, or would this conclude to be an accurate test? Current placed on my leg was in the range micro amps, latencies and variations in reflex feed were recorded in milliseconds.



My husband has helped me describe this hopefully better than l have.

Sue