[DM]

Hi Gislat ~~~ Hi Nilram! Welcome~ Welcome ~ Welcome to NT.

[MSacorn]

Warm hellos and welcomes to gislat and nilram

I've got some good info from reading your posts. I have mostly sensory sympoms and have yet to find a med that helps.

I hope you both will hang around and share your stories. It sure can be frustrating. Grab the fun in life where you can.

[nilram]

Hi Cindy, Maryann, Beth! Fantastic resource you have going here!


Gislat, ditto on the duration for me. Years, coming and going. Doctors have told me I have arthritis, or some slight pinching of spinal nerves perhaps. And symptoms get better when I do the rehab exercises they prescribe -- but not consistently, waxes and wanes. Three+ years ago I was feeling crummy in all the various ways and my doc sent me to a rheumatologist and a neurologist. Neither really came up with anything, and about eight months ago I went back to the neurologist. He now had the skin biopsy he could do, and that pinned it down.

Though the thing about the patches of profound numbness that come and go, and a period where my sense of smell was clearly changed for a period of time, does make me wonder if I have something more going on in the CNS, like MS. One of the questions I'll ask when I see the next guy in January.

My neurologist was also reassuring, that this kind of thing is rarely debilitating or life-shortening when its discovered at my age (48). But, still, it's Idiopathic PN, so I'm wanting to pin it down further.

[gislat]

Even if you had some cervical disk disease, it would not cause the sense of smell issues. I have some mild cervical disease at C34 and C45 but this would not cause my periods of facial burning. Sometimes my tongue feels funny too.

It's reassuring to know that the small fiber issues will not result in disability but still it can be painful. It's hard to convince people that something is wrong while you look fine.

Did the neurologists put you through the full MS workup? (LP, MRI brain, evoked potentials, etc)

Thanks

[RLuckyL]

Does the burning or pain seem to be equal on both sides of your body? Both feet-legs etc.

Ron

[gislat]

Hi,

Yes the burning is symmetric. I have had multiple tests and workups over the years. My neurologist does not feel I have MS nor peripheral neuropathy. He feels I do have a central pain syndrome but my brain and cord MRI is normal. This is all very puzzling.

[SallyC]

Originally Posted by RLuckyL

Does the burning or pain seem to be equal on both sides of your body? Both feet-legs etc.

Ron

Welcome RLuckyL. With MS, Sensory symptoms can be on either side or both. My left side is my weakest side. If it weren't for my stronger right side, I probably couldn't walk at all.

Tell us more about you, Ron. We are here to help, if we can.

[HSPCraig]

Hi Gislat,

WELCOME TO THE NEUROTALK FORUM COMMUNITY AND ALL IT HAS TO OFFER YOU!

Don't feel like you're alone in your situation as we have many members in the same situation of Limboland. Let's just hope they can find some reason for your symptoms and address them in a progressive manner.

We're all here to support you in any way we can.

Again, welcome!

[SallyC]

WoooooHooooooo...Welcome to you too, Nilram. I have to know what your name means and for Gizlat too.

[nilram]

Hi Sally! My username is my first name spelled backwards...

No evoked potentials or LP, but brain and spine MRIs, including the scan sequences they do for MS. Didn't find any lesions. Various, and many, blood tests. I'll be asking the new doc whether any of the CMT genetic marker testing would be indicated. My neurologist didn't think so, but I later decided he used faulty reasoning.

Fortunately for me there are few people that require convincing, and I don't feel compelled to convince any that do. Partner is supportive, sisters are empathetic. Aside from my boss, co-workers don't know, friends variously know or don't know. But, yes, I'd just rather the pain went away and it wasn't an issue.