Left Leg Tingling/slight Numbness ---> Ms Fears. Anyone?

[navyblue]

Hi all,

Recently I've been doing a lot better, for which I credit exercise (I'll probably make a separate encouraging post about that later)

But one thing's been really bothering me, and has popped up again recently with a vengeance- lower leg tingling and numbness. When I first had leg tingling and a sort of "cold" numb patch on my leg, about 8 months ago or so, I got REALLY scared about MS and even wrangled an MRI referral out of a PCP.

The brain MRI w/ contrast came back clear. No lesions.

The cold patch gradually faded. But over these months, of and on, I do get some leg tingling/numbness, usually left leg.

These past couple days it seems more intense than ever before. I find myself thinking "How can I be tingling and numb like this if it's not MS? Is this a normal POTS thing? What does this mean???"

So, I'm asking...does anyone get the numbness and/or tingling of lower leg(s)? Do you have any idea why?

It would be great to hear if other people do who also for all other purposes do not seem to have MS.

[gjensen]

Small Fiber Neuropathy can cause numbness and tingling. I am sure some other things could. I would not think to MS first.

[ks42]

I agree. I wouldn't think MS first either - a lot of things come to mind when I think tingling / numbness in the limbs. You might want to look up peripheral neuropathy and/or small fiber neuropathy. Peripheral neuropathy is tingling / numbness, usually of one or both lower limbs (although it can affect the upper limbs as well), that is really common in diabetes, but can occur with other diseases as well. Actually, there are many diseases / conditions that can cause it, including vascular issues, infections, autoimmune disorders, vitamin deficiencies or excesses (especially the B vitamins, like vitamin B6), toxins/exposures, and so many more!

Small fiber neuropathy in particular is, from my understanding, relatively common in POTS I think. Not positive about that, but it's what I've been told. I've had tingling/numbness in both legs since before I developed POTS. I don't have MS, but that was never really a major concern. My neuro suspects it's small fiber neuropathy, even though my QSART was negative for this. I had an EMG with nerve conduction study (NCV) that ruled out major peripheral neuropathy, and my blood glucose levels are always normal so we know it isn't related to that. We're currently considering doing a biopsy to help figure out if it's really small fiber neuropathy. We think my POTS started from a toxin exposure or infection, so it would probably be one of those two things that caused the neuropathy as well.

Do you have a neurologist? They're awesome at diagnosing neuropathy

[TCP]

The worst of my POTS symptoms came on with neuropathic pain. This was eight years ago now and I have tingling, burning and some numbness. Although this hasn't been diagnosed as small fibre neuropathy, the link is that autonomic dysfunction can also lead to nerve sensations in the legs, feet, hands and arms. I also have it in my torso and head. This doesn't mean to say that this will spread in your case. Everyone is different.

I also have EDS and many people with EDS also have POTS and neuropathic pain. Many have had skin biopsies which show small fibre neuropathy. Ordinary EMG/nerve conduction tests do not show SFN.

Have you been tested for diabetes? Vitamin D and B12 deficiencies can also bring on neuropathic pain, blood tests can show if this is the problem. Lyme Disease from tick bites can also cause some neuropathic pain. Lots of potential causes. These need to be considered.

I hope you can find some relief from this. I consult a neuropathy doctor and he advises changes in diet and exercise.

All the best

[targs66]

I've had a similar situation - numbness and tingling in my left foot, pain radiating up through my left leg and in my left arm, and a definite weakness in my left leg. I have a family history of MS, and felt certain that's what it must be. I've only had one brain MRI six years ago, but based on that they said it's not MS. (I'm currently in the UK and in my experience they do a lot less diagnostic testing than in the US.) I can be quite unsteady on my feet, though it varies with how bad I'm feeling on the day.

It's good to hear others here weigh in on all the possible non-MS causes of those kinds of symptoms, although I really wish I knew what was causing this!

[Sylvie33]

Hi Navyblue,

Symptoms in this arena are very difficult, but you are exercising well, it is extremely unlikely you have MS.

TCP said it best. I do not have POTS or MS (and you should be assured by your MRI) but I do have a resounding cluster of dysautonomic symptoms -- including much numbness, tingling, and pain in my extremities. All of my symptoms (including fatigue, gut and urinary problems, excessive sweating, thirst, etc. etc.) may reflect small fiber neuropathies and I had my skin biopsies just yesterday to try to reach a diagnosis.

I have written you before, and I encouraged you to try and get a good advocate to help you, for it seemed like you needed one to negotiate care with your parents. It seems clear you need a good neurologist as well as someone who will help calm your distress in the face of your symptoms.

My best to you,

Sylvie