My name is Carrie Ann. This is my first post on this support group.
I am going to keep this as brief as possible, please feel free to ask any questions you have.

I have had numerous symptoms over several years. Some have been short term, never to return. Others have been intermittent with some of those increasing in intensitiy. I have seen many doctors, none being able to tell me what is going on. Almost all end up telling me I am either making it up or it is anxiety. (I appologize for the spelling mistakes ahead of time)

Here is a list of my current symptoms...

~a tingling electrical pain on my skin. This pain is very hard to discribe. The closest I have been able to is the nerve pain you get after you hit your "funny bone" but not exactly.

~sensitivity to light touch. This goes with the nerve pain described above. It is consintrated to the place touched 1,000x stronger. examples: loose strains of my hair touching my face, neck,etc., my own fingers touching my skin lightly, my clothing brushing against my skin, a light breeze, etc...

~balance issues, I will walk like I am drunk (when I am not)

~my feet want to point toward themselves when I am walking. Which is very weird as I have always walked "like a duck". I have to actively think to keep my feet pointing outward. At times I even have to stop to turn them outward.

~I have a hard time picking things up. Also I drop things I am holding. My hand just lets go, like it forgets it is holding something

~vision, not exactly double vision more like 1 1/2 (if that makes sense) at the same time I have a hard time "grounding" my vision

~I will overall general feeling of being unbalanced

~my hands will twitch/shake/tremor

~I have had accidents and near accidents with my bowels. It is not a loss of control, more like a loss of "holding it"

~extreme cold spots on the tops of my hands and feet. This is a cold that hurts and feels like it is right down to the bone.

There may be others I am not thinking of at the moment, but this is what I can think of off the top of my head.

Thank you for reading my long post. I look forward to any thoughts, questions, and suggestions you may have.

Carrie Ann

Hello and welcome,
Can you list any diagnosis/s that have been clearly ruled out?
Have you have imaging? x ray, MRI, CT scans? spine, brain etc?
full blood work ups?
If you have reports for any of those it may help members, or they will ask if it may help them.

Any family history of similar?
Any injuries in the past?

The hyper sensitivity to touch, makes me wonder about RSD/CRPS.
Often you will get swelling, temperature & color changes of the skin too.
It can also make muscles spasm and contract..
Our forum for more info , you can read & see if it might fit-
http://neurotalk.psychcentral.com/forum21.html

I forgot to add test I have had in the past, thank you for that. I have had MRI of the brain, it was clear (it was a few years ago however) I've had tons of bloodwork, but I can not tell you what they were exactly for. They all always come out fine. There have been other test, but honestly I am embarrassed to say I do not remember what they were. I have not had any test, besides bloodwork in years.

No family history of anything similar. Other than my grandmother having parkinson's. I did see a movement disorder specilist a year and a half ago who ruled that out.

I don't have any swelling or color changes in my skin. I do have those temp changes on the top of my hands and feet as I discribed.

I do have muscle spasms, which I did leave out. I knew there were things I was forgetting.

I will take a look at the forum you suggested, thank you

oh and forgot....

I did have an injury a couple years ago. I tore 2 ligaments on my knee (one on each side) There was NO cause to this. I did not fall, I did not twist it, I did not do anything to it.

While most of my symptoms started long before this injury, most of the ones I have now have been much worse since the knee injury. In fact, now that I think of it, right after the injury is when things started getting real bad.

I have had an MRI of the brain in the past that was clear. (It was a few years ago, however) I have had tons of blood work, I am embarassed to say I do not know exactly what the blood work was for. It all came back clear.

No family history of anything similar as far as I am aware

I do not have any swelling or skin coloration. I do have temp change with the tops of my hands and feet getting extreme cold spots as I described.

I did have an injury to my knee about two years ago. I tore two ligaments, one on each side. There was no cause to this injury. I did not fall, did not twist it, did not pull it. Now that I think of it while most of my symptoms started long before the knee injury, most of my current ones either started right after that or got much worse after the injury.

I did look at the forum you suggested. I do not think that fits as my nerve pain and sensitivity is wide spread and not in one area. I also, do not have swelling or color changes.

Thank you very much for your response.

Did you see a neurologist for your MRI? Have you had a nerve conduction test?
Are your symptoms better at this time?

Some of us have gotten a tiny bit of improvement with our nerve related symptoms by eating a clean diet (no sugar and no junk food) and by taking vitamins, especially a B Complex.

I've read your posting a couple times and sounds like your tests come back clear. I have balance issues NOW since hip replacement in 2010 and my body is off from this surgery and all the changes made.

I've been taking grape seed extract since 1995 and a friend now takes it for the long neuropathy she has lived with for over 15 yrs...she's off all the drugs she was given from doctors. Statins caused her issue in the first place. Meds can do a negative job on our bodies.. Well anyway, she's got a lot of improvement with the grape seed ex she says she takes now about 5 yrs...

Grape Seed ex addresses so many health symptoms and I wanted to send you a PM but you are not set up for one. My daughter and her children are both on grape seed ex...it's a powerful immune system builder. My thoughts are give grape seed ex a good trial, you might get some help. I've talked about it so much here as I've been taking it so long...I could write my own book. ** has a good overview on what it does.

Hello and Welcome Carrie Ann

You'll find this a great place for sharing and support.

It sounds like time to see a specialist and get some tests run again. I say this since you said it has been years since you had anything but blood work done and you're getting worse. If you have a primary doctor that could be a place to start if you need a referral, otherwise neurology sounds like a good idea or even pain management.

As a member who deals with CRPS I am a little concerned that you say things got much worse after your knee injury. CRPS does tend to arise after trauma and causes some of the symptoms you are having. Pain, hypersensitivity and motor problems are common. As is a coldness in the area. Not everyone has color or temp changes and not everyone has all the symptoms all the time. It is a spectrum and can be difficult to diagnose, especially in "light" cases. A proper work up to rule out other problems with nerves or circulation is very important.

I hope you are able to find good care and answers. I certainly wouldn't put up with what is happening without trying to find a cause. There may very well be treatments that can help.

Welcome aboard. Make yourself at home, there is a lot to explore. There are FAQ and Search features at the top of the Main Forum page if you need.

Take care. I hope you find relief soon,

Anyone with a broad spectrum of nerve symptoms should get a B6 blood test, as excessive B6 can cause all sorts of bizarre nerve symptoms, and I am speaking from experience.

Some people get high B6 from lack of an enzyme(s) to process it properly, others get it from vitamin supplements.

Thank you all for your responses.

Little Paw, Does the sensitivity, coldness, and nerve pain always localized to the injured area? My sensitivity and nerve pain are wide spread and the cold spots are on the tops of both my feet and hands. My injury was in my knee.
From what I read, (besides the swelling and discoloration) the symptoms seem to be the closest I have found with the exception my symptoms are wide spread and move about randomly.

SuperCramp, I will ask about the B6 test, thank you

I see my PCP tomorrow, I have an appointment with a Neurologist already set up for later this month.

I believe my last MRI was ordered by my old PCP (whom I recently stopped seeing because I felt she stopped believing me)