[carrieLharris]

Feeling frustrated with my doctors and life.

Dx sensory/motor nerve damage

I'm too the point where I can't stand for longer than a few minutes. Showering is a chore, keeping up with the family is impossible, and I am not leaving the house most days.

My neuro had originally said a spinal tap would probably not show anything abnormal. I've had MRI of head and spine and bloodwork done which the doctors don't think the bulging discs/B12/anemia/WBC/platelettes are related. Now the next step is spinal tap.

I haven't been given any information/advice/suggestions except to take vitamins and up meds. If they don't think a spinal will show anything, why do it? I'm at the point where I feel nothing will ever help so it doesn't matter. My family is pushing for more tests/trips to mayo/etc. I just don't really want to at this point.

I've never been depressed. I was a busy working mother and now I am successful if I shower or make dinner.

I'm rambling and not sure what I'm even asking or wanting to hear but feeling desperate.

[Blairzo]

Have they suggested what might be wrong?
I just had a Lumbar Puncture. Not the easiest thing in the world to have but I have other issues that contributed to that.
I have aneamia and raised inr which means it takes longer for my blood to clot, my blood work came back satisfactory apart from this although with my b12 at 265, folk on here suggested that this too low but is satisfactory to the doctors.
I got some vit c to take with my iron and I also got some b12 and a b complex to take.
I'm struggling this week but I'll be waiting the next 6-8 weeks with baited breath!

[carrieLharris]

I'm not getting much from the doctors except that I have neuropathy. Both doctor and 2 neuros have said I have a confusing case and they aren't sure what is causing it. The have considered hereditary and CIDP but that's all I really know.

The muscle weakness and cramps are very bad.

Why 6-8 weeks? is that how long it takes for spinal results?

[Blairzo]

Yes the tests results come back in 6-8 weeks. My next neuro appointment is in February.
Am not feeling great today. Of yesterday. It knocked me off my feet for 2 days, third day I was pottering and went shopping but legs were going as I walked.
Monday I went to work but was very slow and didn't do too much to be honest.
I was sent home early but I had a hospital appointment to go to anyway.
Tuesday I went in but was sent home at 10:30.
Today I'm lying down as much as I can. I have nerve pain and a pain wrapping from my back over my hip and into abdomen which is the most problematic just now. I've had a headache since Thursday but it hit hard yesterday.
I'm not saying everyone gets this but you need to be aware.
I had to call the neuro ward where I had my procedure done because they only tell you about a post rural headache. Nerve pain will settle and being off balance should settle, if not go back for a patch, my headache is not severe tho so they're not too concerned.
I think it's useful to get tests done if it can get you effective treatment but they should also tell you about the side effects post procedure.

[Cliffman]

Originally Posted by Blairzo

Yes the tests results come back in 6-8 weeks. My next neuro appointment is in February.
Am not feeling great today. Of yesterday. It knocked me off my feet for 2 days, third day I was pottering and went shopping but legs were going as I walked.
Monday I went to work but was very slow and didn't do too much to be honest.
I was sent home early but I had a hospital appointment to go to anyway.
Tuesday I went in but was sent home at 10:30.
Today I'm lying down as much as I can. I have nerve pain and a pain wrapping from my back over my hip and into abdomen which is the most problematic just now. I've had a headache since Thursday but it hit hard yesterday.
I'm not saying everyone gets this but you need to be aware.
I had to call the neuro ward where I had my procedure done because they only tell you about a post rural headache. Nerve pain will settle and being off balance should settle, if not go back for a patch, my headache is not severe tho so they're not too concerned.
I think it's useful to get tests done if it can get you effective treatment but they should also tell you about the side effects post procedure.

I pray you get some relief soon. Sorry to hear your hurting.

Cliffman

[northerngal]

If you are not having success in getting results from a local neurologist, then Mayo clinic is a way to get all of your tests and some answers in a short period of time. they will run many tests a day and before you leave at the end of the week you will have your results. I had my spinal tap results from there when I left, there was not a long wait.
If you have a thorough neurologist who is getting the tests and labs you need, then you may find that Mayo is just repeating tests you already had. But, then again a second opinion is always good.

I do find it interesting that so many of us with neuropathy seem to have anemia. I have done many searches and never found much information linking the two.

[janieg]

Originally Posted by carrieLharris

Why 6-8 weeks? is that how long it takes for spinal results?

I had my spinal tap results back the next day here in the U.S.

Please see my signature for ideas on supplements. I have had occasional bouts with horrible cramps that I'm certain is due to electrolyte imbalance.

[Blairzo]

Originally Posted by northerngal

If you are not having success in getting results from a local neurologist, then Mayo clinic is a way to get all of your tests and some answers in a short period of time. they will run many tests a day and before you leave at the end of the week you will have your results. I had my spinal tap results from there when I left, there was not a long wait.
If you have a thorough neurologist who is getting the tests and labs you need, then you may find that Mayo is just repeating tests you already had. But, then again a second opinion is always good.

I do find it interesting that so many of us with neuropathy seem to have anemia. I have done many searches and never found much information linking the two.

Hi northern gal, I believe it depends on the tests being done as to the time taken. They can get viral and bacterial screens done within hours but the inflammation tests take longer.
Maybe they send them away to somewhere else but I doubt it since our hospital is a major teaching hospital, but who knows 😊