Atypical neuropathy

[Eggotchi]

Heya,

I was wondering whether anyone else had suffered with any numbness which doesn't fit the usual pattern of diabetic neuropathy? I must admit to being quite freaked out and worried, so please any response is appreciated!

My symptoms started very suddenly a couple of weeks ago. I went to bed with a headache and woke in the night to both my thighs being numb. Over the next couple of weeks, the numbness has spread symmetrically to my knees, inside legs, heels, outside legs etc. Toes are not involved at all and there are no pins and needles, just a loss of sensation in both legs in the same places, spreading outwards, not fluctuating once it has gone numb.

My gp is referring me to a neurologist for tests but said the only options really are for it to be the diabetes as my control has been bad recently, or for it to be a demyelinising condition such as multiple sclerosis. To be honest i'd prefer it to be the diabetes, but having read around it doesn't seem to fit a normal pattern for diabetic neuropathies..

So yeah.. if you have any experience of sudden onset symmetrical numbness that doesn't start in your fingers and toes, and doesn't ever regain sensation, then i would love to know!

Thanks in advance!

 

[trophywench]

Sounds like something going on with your sciatic nerve to me? It comes from your lower spine (I forget which vertebra) where is splits into two and one half goes down each leg. If your lower spine happens to be out of exact sync it can get trapped in which case you definitely have leg pain and may think you've pulled a hamstring, except rest doesn't help.

However I should imagine if it isn't badly trapped it COULD behave like the facial nerve does when you have Bell's Palsy - which is numbing etc - so maybe ......

But I stress - I definitely don't actually KNOW - so the nerve conduction tests are obviously the right thing. How long do you have to wait to get them?

 

[Eggotchi]

Thanks, i have been wondering about spinal problems, but i don't have any back pain and no history of trauma, and apparently it is affecting a few different nerves as much of my legs are now numb...

I have no idea how long the referral will take to come through, as it was only put in on tuesday, and all my gp would say was that with my age and symptoms he didn't think it would drag on for months...

I got really scared yesterday as i realised i couldn't feel temperature in some places now as well, so got another gp appointment but saw someone different as my gp was off... the response was that sensation isn't important, that the referral has gone in, and so not to come back unless i lose muscle function or bowel control.

 

[Owen]

Thanks, i have been wondering about spinal problems, but i don't have any back pain and no history of trauma, and apparently it is affecting a few different nerves as much of my legs are now numb...

I have no idea how long the referral will take to come through, as it was only put in on tuesday, and all my gp would say was that with my age and symptoms he didn't think it would drag on for months...

I got really scared yesterday as i realised i couldn't feel temperature in some places now as well, so got another gp appointment but saw someone different as my gp was off... the response was that sensation isn't important, that the referral has gone in, and so not to come back unless i lose muscle function or bowel control.

I had strange neuropathy so was sent for nerve conduction tests, the lower limbs are still inconclusive, but they discovered carpal and cubital tunnel syndrome. I get like a numbness and tingling in my upper thighs ands my feet have repeated bouts of tingling and numbness

 

[Eggotchi]

Thanks Owen.
What do the nerve conduction tests consist of? Does your thigh numbness come and go?

 

[Owen]

Its mainly in the evening when I am sat down, sometimes can happen at anytime in the day. It feels like a layer of skin goes to sleep, then as it eases It feels slightly itchy.

They place a load of sensors similar to an ECG. They then put a small electrical current through them increasing the intensity until there is a response.

 

[Eggotchi]

I'm glad your numbness isnt constant. The itching sounds annoying though!

Test doesn't sound too scary though, which is a relief!

 

[Owen]

I'm glad your numbness isnt constant. The itching sounds annoying though!

Test doesn't sound too scary though, which is a relief!

Test is a breeze, like a tens machine. The itching is only mild similar to when you warm your hands from the cold.

 

[grovesy]

Good luck hope you find a cause.

 

[Eggotchi]

Thanks Grovesy. 🙂

 

[pippaandben]

Please do not allow your Dr to totally believe it is only reason must be because you have diabetes. I had been complaining to me Dr about numbness on the left shin from knee to ankle several times resulting in blood tests firstly finding I had an under-active thryoid and a year later that I had diabetes. However the real solution was only found after an MRI scan which found the cartilage between 3 vertebra had slipped and was pressing directly on the spinal chord. This caused my no pain whatsoever only slight tingling Apparently after exercise eg walking the spinal chord enlarges minimally but sufficient to create greater pressure and thus greater numbness which was relieved if a sat down for 5 minutes or less.

I have now - May of this year - had spinal decompression and vertebrae linked with rods and screws to ensure stability. I had no pain after the operation at all and had full movement in my spine - but where I had been numb down the shin it is still numb but feeling may return. The whole purpose of the op was to ensure further movement of the discs could not occur which would have left me paralysed in 5-10 years.
It is only an MRI scan which can show where the problem is so the GP has to refer you to a consultant to enable an MRI to be done. From there I was referred to a London Hospital as too many vertebrae were involved and stability had to be ensured before the decompression could be undertaken.

Obviously I can only speak from personal experience and all the information I have given has been told to me about my personal circumstances - however this problem had nothing at all to do with my diabetes. I hope this helps you.

 

[Eggotchi]

Thankyou pippaandben. I am glad to hear that you found out the cause of yours. I am hoping i will get an mri once the neurologist referral has gone through. Time will tell though i guess! Thanks! X

 

[mikeyB]

The only comment I would add to the already sensible ones above is that diabetic neuropathy can affect any nerve in the body, so there isn't really any such thing as a normal pattern.

And there are a host of conditions that aren't diabetic neuropathy that could cause your symptoms. You will need MRI, EMG studies and lumbar puncture to eliminate MS as a cause. Lumbar puncture isn't anywhere near as bad as you might imagine. I fell asleep during mine.

 

[Owen]

The only comment I would add to the already sensible ones above is that diabetic neuropathy can affect any nerve in the body, so there isn't really any such thing as a normal pattern.

And there are a host of conditions that aren't diabetic neuropathy that could cause your symptoms. You will need MRI, EMG studies and lumbar puncture to eliminate MS as a cause. Lumbar puncture isn't anywhere near as bad as you might imagine. I fell asleep during mine.

I have often wondered about MS, do you not need to have balance issues?

 

[mikeyB]

I have often wondered about MS, do you not need to have balance issues?

Not necessarily. MS too can affect any nerve.

 

[Eggotchi]

The only comment I would add to the already sensible ones above is that diabetic neuropathy can affect any nerve in the body, so there isn't really any such thing as a normal pattern.

Agreed.. though having looked at mononeuritis multiplex (which is what my gp suggested would be the diabetic cause) all the info i can find says that it is an asymmetric condition.. that it may become symmetrical over time as more nerves become affected, but that it starts off with non-symmetrical symptoms. I guess that is why i am so freaked out and wondering whether it is MS or another condition which could affect my spinal cord and cause the symmetry.

 

[mikeyB]

Yup. I was heavily investigated for my slightly asymmetrical motor neuropathy. The neurologists, thank goodness, kept a completely open mind about the possible cause. If it's any consolation, they are still not sure whether it is diabetic, but are reasonably sure it's not fatal

Don't worry overmuch about MS. Most people with it reach a normal lifespan, so die with it, rather than of it.

The EMG studies will identify whether this is an upper motor neurone problem , or a lower motor neurone. That is, whether it is the spine or just the nerves locally.

 

[Eggotchi]

Thanks Mike!
🙂