Polyneuropathy

[Trishann]

I was just told I have sensorimotor polyneuropathy in my feet. Also was told that people that is diabetic can get this, but I am not diabetic.

Just wonder if any one else with IC has this too. As for now don't know what is causing it.

Hugs, Trish

[Silverfox]

Trish,

I also have been diagnosed with sensorimotor polyneuropathy. Some call it small nerve fiber neuropathy. I have it in my feet and in my hands. It spread slowly throughout my entire body over the years,because the Doctors I went to did not recognize symptoms as being caused by my low thyroid disease. I inherited my disease called hypothyroidism. Because I suffered decades without treatment with proper thyroid hormone replacement the nerve damage was quite severe, but when I went to Docs for help they told me it was in my head.

Neuropathy is damage to the nerves outside the brain and spinal column. I have been told by my current Docs that I have this nerve damage all throughout my body. That is the reason I suffered for years with so many strange symptoms. I think I was born with the thyroid disease. I remember having numbness in my feet and legs as a small child, I remember being aware of these symptoms at a early age. My teachers noticed but they thought I was being a difficult child. I also had bladder frequency as early as six years old, my teachers complained to my parents who only lectured me about it. At that age I didn't have any idea how to ask for help. I feel sorry for all the little kids who might have the same nerve damage and are unable to receive help. I kept quiet about it because I felt so ashamed. Yes, neuropathy can affect the bladder and does pretty often!!!...

I have since learned that I have more than sensory neuropathy, but I also have some autonomic neuropathy which causes no noticeable feelings but causes organs or organ systems to fail to function. For example, having bowel problems causing severe constipation.

Another example for me,that was very scary,was having shortness of breath (some call it air hunger) but I could not do aroebics and I had to sleep with three pillows behind my head to sleep upright in bed or I could not breathe.(some people suffer from sleep apnea due to this neuropathy!) My breathing problems was caused by damage to the phrenic nerve that travels down the neck to the diaphram muscles around the lungs to be weak and unable to bring in air and let it out. The Doctor increased my thyroid hormone and now I can exercise and sleep with no breathing problem.

I am not trying to scare you,but to inform that it is most important to find a Doctor who will search with you for the cause of your sensorimotor neuropathy. Don't allow them to tell you that they do not know as this will prolong your getting help and you might halt the progression of further neuropathy if you find the underlying cause or if you are very fortunate treatment could improve or resolve completely the symptoms.

Both hypothyroidism and diabetes are metabolic diseases that interfere with the blood flow bringing oxygen and nutrients to fragile sensory nerves. Nerves can heal. Nerves heal very slowly and I was told by a Doctor that they heal from the spinal cord on out to the distal ends (feet, hands and possibly the nerve endings in the urethra and pelvis)

I think it would be good to have many questions for your Doctors and don't let them tell you it is idiopathic.(means they don't know)

When you know the cause your chances of feeling better or recovering from the neuropathy symptoms is possible.

Do you have any numbness or tingling in your hands???

Tell us more of your symptoms as there are over 100 or more causes of neuropathy and perhaps you have one that they can treat.

[Trishann]

I just complain to the doctors about my feet and ankles because that is what
was so painful. I had a EMG-NCV test done on the lower part, and was dx.
sensorimotor polyneuropathy. I did not tell the doctor about my hands having
some numbness like, just was not connecting these things together.
There are other things going on which I do not know if it is related to
polyneuropathy or not.

Few times already on my upper leg a large spot would have an abnormal feeling, but was able to walk, I just told my husband it feels really weird, numbness feeling.
I have noticed for a while my elbow would hurt even at times it is on a soft
surface. I have been having stinging across my upper back, and just things like this.

My doctor before dx. with polyneuropathy put me on pain medicine for my ankles and feet. I am going to make an appointment with him soon. My husband talked to him over the phone and said something about being on medicine for the rest of my life. Not for sure what is going to happen but if you have questions you think I should ask, I am more willing to listen. I just did not connect this all together.

Thank you, Trish

[Silverfox]

Trish,

There are some good web sites with support groups and lots of information that would help you. Do searches on sensoimotor neuropathy, autonomic neuropathy, small fiber neuropathy, thyroid neuropathy and anything close to those.

There is a lot of information and links to information on neuropathy because it is very common.

You say you do not have diabetes so I am thinking that hypothyroidism is another possibility that you might want to ask your Doctor about.

Some of these other symptoms you mention, the numbness in upper leg and the pain in the arm might all have a common cause. I had numbness in my leg and when I took a step, because of the numbness, I did not feel my foot and down I would fall.

Make a list of all your symptoms and ask your Doc to help you.

I will get back If I think of more.

to your good health, Silverfox

[ICNDonna]

I suggest you ask your doctor to order blood tests to rule out thyroid problems and diabetes.

Donna

[Trishann]

Thanks ladies, as you mention it, I was thinking about the thyroid too.
Silverfox thank you for the websites that you sent me.

:grouphug: Trish