Moving Forward with Neuropathy

[Murdochsmama]

6 years ago my feet began feeling tingly and burning. Now they are completely numb up to my knees. My legs are weak and even with exercise and weights, I cannot get them stronger. I'm wondering if the weakness is a neurological issue. I e had a Laminectomy in my low back but received no relief from that. The doctor thought that may help with the weak legs. I have no idea how to proceed or where to continue to look for help. Nerve conduction testing is pretty normal. Now when trying to sleep on my side I have burning in one hip and have to stay off of that side. I'm a 52 yr old female. Is anyone else experiencing similar issues?

[Esperanto]

Muscle weakness in neuropathy can have various causes, depending on the type of neuropathy and its underlying cause. Have you and your doctors been able to determine that?

[Murdochsmama in reply to Esperanto]

Not the cause, no. It's odd because the neuropathy is in my feet and knees then down. The weakness is in my upper legs.

[AtopicGuy]

This link gives a very comprehensive list of possible causes for tingling & burning; everything from vitamin deficiency, to diabetes, to nerve damage:

webmd.com/brain/tingling-in...

Anything ring a bell? Only you will know what risk factors you carry, what scans you've had, and what has already been ruled out. After 6 years without a successful treatment, it's no surprise the symptoms have changed to numbness. Here's a guide:

webmd.com/multiple-sclerosi...

Sometimes the best way to narrow down a disease is to try a short course of medicine to see whether it has a significant effect. For example (assuming infections have been ruled out) a strong response to steroids can flag up autoimmune disorders.

[Murdochsmama in reply to AtopicGuy]

Thank you so much!!

[bookish]

Hi, when was your last B12 and folate check and do you have the results? Are you on any medication or supplements? Were the legs weak, then the laminectomy, then the neuropathy, or in a different order? Sorry for all the questions. Cheers

[Murdochsmama in reply to bookish]

My feet were the first to have an issue. It started with tingling then numbness in the bottom of my feet. That ended up going into my whole foot and calves and knees, within 6 months. Then the weak thighs, then hip pain and then the back pain. So basically from the bottom up. I had a laminectomy done a few years ago in hopes of the back/hip pain going away. It didn't help. It all started 4 years ago. 2 months after moving into our new (older) home. I was not injured but of course I overdid it.

[Murdochsmama in reply to bookish]

.....and I appreciate all the questions! Ask away as I've no idea how to move forward or what type of doctor to progress to. I did show low B12 on testing but they tested and said here ya go. Now what?? I am not on any supplements or medications. I tried B12 on my own but it aggravates my TMJ fiercely!!

[bookish in reply to Murdochsmama]

Hi, that does sound very much like a B12 deficiency. How low is low? You should have been given a loading dose of injections, usually 6 over two weeks, and then hopefully continued with every other day until symptoms had stopped improving although some get put straight to 2 or 3 monthly maintenance injections. It could be that the TMJ is a symptom, in which case I am afraid it is likely to get worse temporarily as the nerves heal, a process called reversing out. Otherwise it may have been an additive or filler reaction, or possibly grain from the B12 fermentation. The type of B12 can also make a difference to some people. As Esperanto says, it would be worth checking any/all Bs that you can get tested (especially B1, B2, B6, B9, B12) although some can show high when they are not being properly metabolised or don't have enough co-factors, so the picture can get confusing. I'd also be looking at all the basics - vit D, ferritin, folate, magnesium, potassium, blood sugar, thyroid function, thinking about other earlier illness such as viruses or medications although they could have been hovering for a while before you started to be symptomatic, plus any family history of autoimmunity, B12 deficiency/PA. Copies of old results can be helpful. Nerve conduction is often normal for B12 - did they test for small fibre (thermal threshold test or biopsy)? I'd get some testing and find a good neurologist if you haven't got one. Best wishes

[Esperanto]

Muscle weakness in the thighs can indeed have various causes. It can be a result of the neuropathy itself, but it can also be related to other factors such as muscle loss due to inactivity (it seems like you are doing exercises) or an underlying muscle disorder. It is really important to consult a specialist to determine the exact cause of the muscle weakness. The diagnosis of polyneuropathies is based on symptoms and various investigations, such as muscle and nerve testing (EMG).

In any case, I would advise following bookish's suggestion to check your B vitamins. From my own experience, I would also add that it is important to check for B6 deficiency or overdose, as it can have serious consequences.

[Murdochsmama in reply to Esperanto]

My EMG shows all normal signs, somehow (?!?) and yes, I've tried building muscle to no avail. I am following up with testing on B levels so hopefully this will lead me somewhere helpful. I truly appreciate your help!