[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

[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.

[gislat]

My user name gislat has the letter of my first name and then my last name. I should have disguised my identity better!

I live in AZ and might get another opinion at the Mayo Clinic Scottsdale, though the docs at the Barrow are likely just as good. I have heard that Mayo is big on repeating a lot of the tests and running up a nice bill. They are also big on sural nerve biopsy and I don't need yet another scar on my foot/leg.

Does CMT testing mean charcot marie tooth? I believe it starts with muscle wasting in the calf with weakness.

If you want to read about a strange neuropathy look up hnpp.org. My second neurologist briefly mentioned it in the differential but I don't have any weakness.

Take Care

[Judy2]

Hi gislat and nilram......Welcome to NeuroTalk!! I haven't been here too often lately with all the Christmas "stuff" to be done -- it takes forever when you're in a wheelchair!!! Glad you found us and hang in there, your diagnosis may be just around the corner!!!

Take care.........

[tovaxin_lab_rat]

Welcome nilram and gislat! Sorry I am late to this....just lazy!

nilram - I go to Portland (more specifically St Vincent's in Cedar Hills/Barnes Rd) for the clinical trial that I am in once a month for tx and see Dr. Stanley Cohan. I grew up in Hillsboro and used to work at VA Hospital connected to OHSU. I now live in Boise.

The MS center there is very good. I wish you luck with your appt in January.

I too have started having neuropathic pain in both my legs again and the doc have rx'd neurontin but I have opted out adding more meds to the long list I am already taking. It comes and goes and if I get enough rest and take Soma at night, I can get through the worst of it.

When I was first dx'd, I had horrible hypersensitivity in my upper thighs, back of legs and buttock area. Could not even touch me and it was excruciating to wear clothes. I was miserable. My neuro tested me for PN which came back negative (not a fun test!) and decided it was a symptom I was exhibiting during an exacerbation. Great...something to look forward to! It comes and goes. I have realized it is heat related. Stay cool and hydrated and it is tolerable. Live and learn with this disease. Get myself too hot and don't drink enough water...and wham! I pay for that! (I am a landscape designer and work outside all summer! Duh...)

I hope both of you get the answers you need to treat your pain. It's not fun. It's funny, but there are some docs out there who say there is no pain with MS....


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