Today's visit to the neuros
 

did not turn out as expected. Why? Because now it seems that they have anchored upon the origination of my problem back in January as being a thalamus area stroke that resulted in a CNS and not PN syndrome, something called Dejerine-Roussy. This conclusion was made because of the overnight onset of burning symptoms which they say does not occur in PN, even though the June brain MRI w/contrast did not show stroke. They said PN comes on gradually and doesn't hit everywhere (mostly) as it did me all at once like a big sledgehammer.

However, D-R supposedly affects only one side of the body, which they had mentioned, but said the event could have occurred right in the middle of both thalamic hemispheres and that would account for my two-sided symmetrical symptoms. Then D-R would pretty much fit my case. But forgot to ask how does the positive skin biopsy for SFSN jibe with the thalamus stroke Dx?

Was Rx'd a sympatomatic - nortriptyline, low dose 10 mg titrated up to 20 mg after 10 days. Forget it - frightening (to me) possible common to serious side effects. Plus it's to be taken with caution by anybody on thyroid med which I am and they know that.

I apologize, but am back to being confused again and don't know if it's even worth getting another opinion.

Well, it could be and maybe not. Central pain syndrome, does exist, and people with MS may get it due to brain lesions.

It would not remit and recur and have good days and bad like the PN does, however, to the same extent.

The risks with nortriptyline involve hyper-thyroidism not hypo. The warning includes levothyroxine because when people are given medications sometimes there are high dose titration errors, which are temporary hyper-events. Elevated thyroid levels lead to cardiac events by themselves, so the warning with the TCA potential exists for that reason..additive stress on the heart. Also stimulants can interact with nortriptyline, and in the ADHD population there have been a handful of children taking both Ritalin and nortriptyline that have had fatal cardiac events. TCAs can also cause photosensitivity reactions with sun exposure. I personally think in the extreme reactions with the heart, that low magnesium and low potassium can be the triggers.
The long QT research shows that now.
Here is a link with drug lists for it:
http://www.azcert.org/medical-pros/d...drug-lists.cfm

TCAs have a potential to affect heart rhythm and therefore that is why they are not commonly used for depression anymore. Typical doses for depression are much higher, and with nortriptyline would be 50mg a day and above. The very low doses used for pain, are less risky. People with a genetic tendency to long QT syndrome should avoid TCAs completely. This however, can be screened for with an EKG. Having an EKG before treatment as a base line, and then during treatment with the TCA will show any abnormalities should they appear.

As far as the skin biopsy goes: Tests only show one snapshot in time for a person. The biopsy does not give a conclusive result in individual cases, unless repeated, showing changes over time. It is relatively new, and interpretation in people is still just that, an interpretation. It could be you always had fewer nerve endings, genetically. It could be those nerves decline with aging normally. You don't know what you had when you were 30 or 50, for example.
(sensory nerves and perception tend to decline with age for everyone to some extent).

TCAs do work for some people, so don't write them off just yet.
If you feel you are improving some, without them, you can delay that decision. But before taking them, it is always best to have the EKGs, esp at your age. Treatment of central pain syndromes varies with the person. If really severe discomfort is present then doctors go for anti-seizure drugs too. But these cause serious problems in the elderly--hyponatremia-- for one.
Alot depends on you and how you handle this discomfort, and how severe it is, and whether it progresses or not. Things like that should be considered too.

Agreed--
 

--and any doctor who says that all peripheral neuropathy syndromes come on gradually needs to go back to neurology rotation; a number of toxic and autoimmune neuropathies have very rapid onset (mine certainly did--within hours):

http://neuromuscular.wustl.edu/time/...htm#neuropathy

But, part of the problem with diagnosis here is that acute onset may well indicate a central nervous system insult.

It is certainly possible you may have Central Pain Syndrome, and that condition can be bilateral. Anything that hits the spinothalamic tracts may cause it--stroke, trauma, MS, B12 deficiency, and other situations that you can find out about here:

http://centralpain.org/

:)
MrsD and glenntaj -

Thank you both very much for your replies and for explaining things to that should have been explained by the docs. They know how I am about meds, but didn't suggest any alternatives whatsoever when I asked. Told them I take a group of supplements and they said good.

Well - I guess anything is possible. Don't know what kind of testing would determine if a spinothalamic insult happened, but none was suggested by them.
However, after reading up about CPS, what jumped out most was that the burning, etc., is pretty bad and the condition tends to get worse not better over time. That's not the case for me, as I've said before.

Glenntaj, loved your remark about the docs getting back into neuro rotation. Sad, but true!

Interesting, Mrs D, that you mention a skin punch biopsy done now might not have the same result as the one done in January. Due soon for the annual EKG/stress echo and will discuss nortrip with my cardiologist.

Well, back to the drawing board. In the meantime, will just go about my life but have the MRA that the neuros strongly suggest because I had those brief gibberish attacks in the spring and 2005 about which I did nothing.

Hope you both are doing okay.

Sheltiemom

My neuropathy came on grdually and then pounded me, its not any better and certainely getting worse,, I dont know,, I just hate to see you have to have this Dx and it might not be the problem,, if it were a stroke,, wouldnt that be evident on a MRI or angiogram of the brain,,, I guess what i;m saying is that there has to be a way to pinpoint it,, its sad to think you might be hanging on to a Dx that might not be right,, when I was in the hospital in 08,, they were convinced I had a stroke in my spinal cord,, then attributed the shadow as a gibbs artifact,,, second MRI showed the same thing,, again they said artifact on film,, so who do you believe,, my neuro who did the punch biopsy says small fiber neuropathy,, she left the practice,, I stayed with her boss,, he was and is useless,,, so its back to not knowing anything and things getting worse,,, I swear ilm losing my mind over this,, things feel cold,,, hot feels cold,, cold feels hot,, i hate it

Diagnoses accuracy varies...and can be very controversial.

Some studies (more recently say up to 40% on autopsy are inaccurate)..and others say 10-25% at least.

I would assume that a neuro diagnosis would be difficult to prove while alive. So don't fret over this idea..interpretation.

But do be concerned IF it is a result of a TIA or stroke, you need to have c-reactive protein, and homocysteine to monitor so it does not likely repeat itself. Keep blood pressure under control, also. Lipoprotein a is also a marker for stroke. You can have that test too. (it is genetic and if low, your risk is less, much less).

One thing that is problematic is aspirin. There is new evidence that even with tiny doses, there can be small bleeds in the brain.
So your new test, may show that.

Testing only goes so far. It is not cast in stone.

Hi, FTB -

Thanks very much for replying. I know how you've been suffering with your condition - whatever it is. From everything I know firsthand and have read about small fiber, it can be just terrible and if compounded by autonomic issues - devastating.:sorry:

Later on tonight, will be bring back the particulars to post about a common spice that I just read about but have to go out now. MrsD probably already knows about it.

Difficult as it is, hang in there.

Sheltiemom