Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group upcoming neurology appt.

hi all...

just a quick inquiry into any key questions or tests to ask for @ my upcoming neurology appointment. mainly, things anyone has gone through early on in their dx journey to rule in/out other problems.

the main reason i'm seeing a neurologist is because of the burning pain throughout the left side of my body, as well as the numbness/tingling i often get in my hands and feet (esp. when i first wake up). i plan to ask for a nerve conduction study, among other things.

if anything comes to mind, please share...

continued thanks,

-j

Hello -j

I also had this test done on me after my crash, though at the time of the test, neither me nor my mother remembered my complaining of tingling or numbness. It turned out that I had neurophothy in my legs, but not in my arms. I'll be honest with you, the test was not fun.

Wow this brings back a humorus memory. I had to have Botox injected into my leg to make the muscle relax. I must have the youngest looking legs in all of Albuquerque. I am reminded of this because the process for testing is very similar to the Botox injection process.

BTW Even if you have nearve problems, nerves do actually grow back, acording to my Neurologist. They grow back at about an inch a year.

To answer your question, I have had Sciatica. I would ask to be tested foor that, as I think that itis common among ASers. Though there is nothing they can do for it, short of surgery in extremem cases.

I hope this is of help to you. Please feel free to PM any questions that you have to me.

Dude.........ask your doctor if he cures patients with no health insurance faster than those with health insurance.
Hope it all turns out well and think positive!

A few years ago, I saw the Neurologist for some increasing problems on the right side, especially from my hips down to my toes. I was getting a high intensity of numbness everywhere on the leg which never seemed to stop but the worst problem was the sensation of hot boiling water running down my calf muscle. This felt like the real thing.

And during all the above sensations, I continually had sharp pain spasms in my hip but more often, in my feet from the heel to the outside edge of the foot and also the toes. When any of these happened, it would cause me to fall to my knees. The Doctor prescribed Neurontin which I took and it ruined my life. My sons had to almost carry me from room to room because I became so groggy.

My wife read about a product that had just been tested out at the Medical Faculty of the University of BC and so, she went out one day and bought it for me. The next day, the Neurontin got flushed down the toilet.

BTW, all the pain and nerve problems I was having was found to be coming from the L4/L5 area where my back straightening surgery had been done. This is where all the nerves going down my leg are exiting from the spine and these nerves have been damaged and were experiencing the continuing calcification at this location.

I have, over the years, read the names of all the newer AS medications and have never tried any of them and for good reason. My stomach would not tolerate them and I ended up with less than 15 percent of my stomach remaining.

I am using a completely different approach to combat pain and I am more AS pain free than anyone else on this site, except for some of those on the NSD. And even though this has worked for me, I am the only one at KickAS who uses it.

If you want more info, PM me.

OldGeorge

George, What was the product?

Bob

Hi Bob,

For the last many years, all I use for pain relief are

* deep needle therapy every few months in the muscles that are painful and

* a belt to wear around my body which covers the nerves coming out of the L4/L5 area

After I got used to wearing the belt 24/7 and also got used to being pain free, I removed the belt one day in an experiment to see if the pain would come back. In a couple of hours, the pain was far worse than I had ever had over the years. I put the belt back on quickly and in half an hour, I was back to normal.

When I had my Prostate surgery over a year ago, the Anesthetist let me keep the belt on and after, came up to my room in the hospital to find out how to get several of them. He was a leader of a Pain management group in our area.

It was my wife Dorrit who discovered the Farabloc method. She had been looking up all she could find about pain relief without pills and accidently found a woman who knew someone who used the product. The next day, Dorrit siad that she had to go out to buy a few things and a couple of hours later, she was back. She handed me a belt that was wider at the back and could be fastened at the front.

I was going through a lot of pain that day and wasn't much in the mood for trying on an ugly looking belt but she insisted and you don't mess around with Dorrit when she insists. I put the belt on and laid back in my recliner and I still hurt. Ater 15 minutes, I could feel a lessening of the pain all down my legs and Dorrit looked at me and said that she could tell by my face that the pain was going away.

In less than an hour, I was pain free in all the areas that were affected by the nerves in the L4 area. I still have the nerves in my back being compressed and I am losing a lot of control in my right leg and I have had to start walking with a cane and I can sleep without sharp pains waking me up every hour.

I know that this nerve area is getting worse but I am not going to take of the belt to find out how much worse. BTW, when Dorrit bought this for me, she said that they would take it back if it didn't work.

They are using this material in the belt for amputees who are troubled with referred pain after the removal of part of the leg and when I heard about that, I donated my extra belt to a lady who was going down to South America to work in a mission hospital where they have lots of people who have lost parts of their legs because of landmines. Some of them are now wearing parts of my farabloc to cover the stub of their leg so they no longer feel pains in their foot that isn't there any more.

Take a look at the website. It has been tested by several Universities and it works for me.


Lots of info at www.farabloc.com

George

Hi Dan,

Re my post on the belt I use, I don't have sciatic nerve pain anymore either, (Regardless of what the Doctors say about it).

George

Hi, I too have had nerve tests in my legs, and I have to mirror Dan in saying the tests are not pleasant. I had no idea what the tests would involve when I got there and I wish I could have been prepared, I don't want to put you off, but its horrible when you don't know what's coming. Perhaps the tests you have will be different.

I had these tests during the diagnosis time when my main symptom was sciatica, all the tests came back normal...I don't really understand how these things work, my sciatica is still absolutely horrendous on occasion and i worry about permanent nerve damage in my legs, but i'm told this is very rare.

Good luck with everything.

Sarah,
How horrible what do they do???? I have been scheuled for this before but did not go due to expense but the boiling water thing George was talking about is exactly what I feel , I could not explain it to my hubby except to tell him it felt really hot from hip to calf.
Are the tests necessary and what do they do eactly??? Does it hurt???
Yipes!!!

Twilight

Oh sorry twighlight!! i didn't want to freak you out, just to prepare you in case its the same test

The short version of the test is that small needles were inserted into different sections of my leg, lower back and bottom, this was ok, just like having acupuncture, and I thought this is easy peasy (i couldn't see what they were doing as i was face down), but then the next thing I knew I had jumped off the bed and was alomost on the ceiling and had burst in an uncontrollable fit of tears because of the pain - they had put an electric current through the needles and because i wasn't expecting it and i was so sensitive anyway....well, they practically had to hold me down to finish the tests, and all that in my bra and pants, mortifying!! As I said my tests came back normal, so perhaps had I shown problems and damamged nerves i wouldn't have felt the elecricity shoot through me like that, never thought i'd prey for damaged nerves!!!!

Just ask up front what they will do, and if it involves electricity and needles, brace yourself, things never hurt so much when you're expecting it.