Hello everyone,
My name is Trudy and have been on a roller coaster for 12 weeks.
I am generally a very active person - I am a mother of 2 wonderful boys - 11 and 7 and married to a wonderful man who holds me up when I can't.(literally.) lol I need some serious help with my health and am open to new ideas and leaving no stone unturned. I saw the forum and have been reading the threads. Given my current dilemma- I felt there would be good knowledge here to help me. Here goes my story. (I am new to posting so If I write too much please excuse the newbie.)

In 2009 I had a diskectomy and fusion of C5-C6. In the mri they also found a small syrinx C7. The neurosurgeon said the syrinx was not an issue and would resolve itself. I was great after surgery and proceeded to do a 100 km pilgrimage through Spain on the Camino to Santiago. (Now a movie)

12 weeks ago - out of the blue - I began feeling pain in my knees, aches and pains. They progressed to weaknesses in the legs, electrical impulses in both arms, neck pain, weakness in the hands and sensitivity to touch. OH and horrible fatigue. I had mri's of the cervical spine, thoracic spine, brain and a CT scan. I have had every blood test imaginable and of course a spinal tap. All tests were negative for metals, proteins, lyme, MS, B12- D's all normal. My first neurosurgeon felt it was the syrinx and it needed to be monitored - possibly operated on but he felt it was too small. The second neurosurgeon - who has more experience with syrinxes -felt it was too small to be doing any of this damage and he asked for the CT- Scan that showed two small cervical ribs. He ordered a diagnostic nerve block that was done and offered no results. My neurologist - felt none of those diagnosis(syrinx, ribs) would give me these symptoms and diagnosed me with idiopathic peripheral neuropathy. I was just evaluated by a PT to help with my wide gait and help to strengthen my muscles. I have an appt with a neurologist at the Peripheral Neuropathy center in NY. I have been out of work for 10 weeks and I still have no real answers. So what do I really have? Who should I believe? Looking for some answers and support.... Thanks

Hi Trudy and welcome to NeuroTalk. LOVED that movie The Way and very impressed that you did the walk. We have a PN Forum here ..http://neurotalk.psychcentral.com/forum20.html

You will find a lot of good information there and good support! I'm glad you have joined us but sorry for the reason.

Hello Trudy and WELCOME to NeuroTalk!

I see that Alffe has given you a great link to help you get started and find your way.

Please feel free to roam around and join in anywhere.

If you have any questions or need any assistance in finding your way around please do not hesitated to ask. Someone will always be around shortly to help you in any way that we are able.

I look forward to seeing you around the board.

Abbie

It's great that you are here!

You will get some wonderful feedback on the PN forum. There is so much helpful information at the top section of the forum and you'll get alot of great support.
Like you, my PN nightmare started with pain in my knees and ended up radiating outward to consume both legs. I can certainly relate to how frustrating it is to go thru all those tests and still not have a solid diagnosis.

Hang in there, tho. You'll get a much better understanding of what neuropathy is all about. You aren't alone in this.

Caring,
Rae

Trudy,

Happy to see you have come to be with us. There are great number and caring fellow members here, just let us know how we can assist, you will see we are are supportive and relaxing place. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene