I was at neurology today and they are testing me for what seems like a million things.
I have got symptoms in my feet and bladder / bowel etc.
They are testing for peripheral neuropathy amongst other things. I have to get nerve conduction studies and a brain MRI.
We have a few fair few auto immune things in the family so they are testing me for them and things like lymes.
Funnily enough I'm feeling the best I have In a long time, it's nuts that I'm feeling much better and they are searching for anything and everything.
I have weakness in my right leg and foot. 3/5 and I have weak reflexes and absent reflex in foot. I got burning and tingling in my middle toes and it's difficult to know what my big toe is doing.
I don't know when my bladder is full so I've been catheterising for a while. I'm still having bowel issues, and I've lost weight so they're testing for coeliacs.
I got so much buzzing around in my head, is this a usual initial appt?
What the nerve testing like? Why do they do so many tests for so many diseases?

They put needles in your muscles and put an electrical charge on the needle to see if the muscles make a movement. Before that they take a probe and send electrical charges in different parts of your legs to see if your toes react. They do that in several locations. Of course the whole time they are telling you to relax.

start a journal where you list tests and results. Medications and symptoms before and after to record effectiveness. Use a 1 to 10 for pain scale and frequency in hours or days for changes in bladder and or bowel. I feel that the bunched up testing is a good thing. Many have to wait extended periods to get tests approved and scheduled. Not capturing the info soon leads to duplication and retracing steps. Your initial appt is not the most basic as it sounds like there may be an Auto-immune component with the bowel and bladder involved. Tinnitis is also a symptom so I don't know if you are joking around with the buzzing in your head. Good Luck, Ken in Texas.

I agree that getting as many test done as possible is great....I know a lot of people on here would love for their doctors to take the time to try and find out what is wrong with them.

As for the nerve conduction study....not much to it...I was scared to death and the little pads and small waves of currents were not a big deal....the muscle test was just one stick in the thigh and one in the arm. It was only unpleasant for a moment.

Take care and keep us posted.

Debi from Georgia

Your EMG does not sound like mine at all. How did you get away with such a simpler version. Koodos to you lucky one. They did a much more comprehensive test in me. Have you lost a lot of feeling in your arms and legs. Was it an original or follow up test?

This was the original test at the beginning prior to my skin punch biopsy and I can assure you I had not lost feeling in my arms or legs.

Having that test done was much less painful than the Severe Small Fiber Neuropathy I live with everyday.

Everyone has a different experience with those tests and I just wanted the original poster to know my experience was not that bad.

I am truly sorry yours was so painful.

Sincerely yours,

Debi from Georgia

Thank you for your replies.
I'm at a loss at the moment as to what to think.
I started out with a simple MRI on my back as this was thought the main culprit. As I have had problems there and surgery twice, and further I juries to c spine and thoracic spine I just thought it would be a case of disc trouble, physio etc
Due to my already having had spinal issues and a brain injury they want to do as much testing as possible to see what is residual from previous injury and what could be causing my symptoms.
The Dr said it is sounding like an auto immune thing, possibly PN or maybe something else but wait and see what the tests show up.
I am rubbish at waiting!

sounds like autonomic neuropathy, have you been tested for diabetes yet?

Not that I know of. My dad is type 1. I got Ketoic during pregnancies but I just had to modify my diet. I had GTT about 15 years back.
I have a balanced diet, I drink plenty as I have had kidney and bladder issues, first they said drink more but when they saw how much I was drinking I was told to cut back!
I am quite active and try to keep as fit as I can.
Is it normal for my foot to keep going numb and taking forever to be more normal? Every time I'm sat working with a child for any length of time it's gone when I stand up. I also get light headed when I stand up.
Now it sounds like I'm just looking for things that I have been ignoring for months to be fitting in with something I don't even know if I have.
Should I keep it in my diary and should I note down things like feeling like you're away to faint when you stand up? Will they think I'm a hypochondriac?
I'm so out of my depth right now, I'd probably be questioning the nerve pain shooting down my nose even tho it's at the other end of my body!!
I do not want to be medicalised if you know what I mean.
I just want to be Mrs Blair, Raksha and Mum. I have spent far too long trying to get back to being me after my car accident for me to end up back in medical limbo land again.
I'm far too busy enjoying life to be interrupted by something like this, I'm praying that everything will check out fine and I can just get on with getting on with life.
I hope that doesn't sound trite or offensive to people here, I am truly grateful of the help you have given me this far. I'm exhausted. And confused and a big angry and feeling a bit peeved at my body doing odd things and letting me down.

It's okay to feel all of the above, Blairzo. I hope this all sorts out for you somehow, someway.

I would keep a journal, if for nothing else your own tracking. Many people find relief from supplements and dietary changes. Try to make few or even one change at a time to see what helps/doesn't.

It is a hard thing to cope with, but many folks here do do in a myriad of ways. I hope with all my being you have to do such for a short amount of time.

Best of wishes,

Jon