[invisable]

and how long should we wait inbetween restests, such as EMG's, Skin Biopsy's, blood work?

Please don't tell me I need another spinal tap........

[daniella]

I think it depends on the test and also one's symptoms. For myself since my initial testing showed very little,my pain increased,and then also I developed new health conditions/pain was why I had repeats of certain tests.

[rose_thorn98]

My doctor actually told me yesterday that tests don't ever need to be redone! I don't beleive him~

[Raglet]

I have emgs done every couple of years. They always support the increase in symptoms that I am experiencing. I have sensorimotor axonal neuropathy. I have never had a nerve biopsy - no point really seeing all my damage is very evident on the emg.

I have regular bloodwork for my lupus - no set schedule though, it's on an as needed basis.

raglet

[Kitt]

You really don't need an EMG/NCV redone. An expert neurologist in CMT told us that. It just shows that you are progressing as if I wouldn't know that already. It is for the benefit of the doctor. I believe him.

[echoes long ago]

i agree with kitt. i started out with an emg/ncs in 2003 with mild to moderate and two years ago it progressed to severe on the emg/ncs. where else is there to go from there? ha! i dont see any point to that. i get get a full pulmonary function test every 3 months and that has been sinking steadily but its important to gauge that closely at this point so a testing i will go. for pn i dont think i need anymore emg/ncs's unless i improve and thats unlikely. i could see doing different tests if new symptoms develop or new breakthroughs are made.

[glenntaj]

--would have a lot to do with whether a "smoking gun" cause is found for one's symptoms early on, and whether or not one gets a firm diagnosis.

There are some problems which tend to evolve over time, and one may initially have negative or ambiguous test results that change over time, such as with many chronic autoimmune conditions (Cycleops can talk a lot about that). And, of course, there are some situations in which constant testing is warranted--such as blood sugar in diabetics--to ensure there are not acute crises.

The most difficult situations are those in which there aren't unequivocal results or diagnoses. The idiopathic are always wondering if another test down the road will show SOMETHING that might explain their symptoms--sometimes eventually it will, sometimes not . . .

The sad part about this is that economic considerations most often trump clinical considerations in determining how much testing gets done.

[dahlek]

and test out the wazoo! Then, once they've gotten a dignosis they can DO something for? The MINIMUM of 'sophisticated' testing is done..and then the docs have to jump thru their hoops to 'treat you' and keep doing so. Usually supported by basic key blood test #'s and basic 'reflex' testing, plus your 'reports' on how you feel... That then puts YOU on the hot spot to be HONEST w/your doc about treatments! At times for US? That too can be a double-edged sword.
That old proverb? "Be careful what you wish for, you mite just get it"?
Standards I'm sure are different for each neuro issue and I'll bet there's a secret doctor's handbook out there that could tell us the whens and whyfores? BUT, I've not found it YET! I'm still looking!
BTW? Since I was diagnosed, I was tested the first 6 months VERY CAREFULLY, after that? Not much, most of my tests, and bloodwork are ordered by my other docs for my 'other' medical problems. What I DO try to do tho, is be sure my other docs get copies of the others' bloodworkups. Why? Mite just be something there that could help in another quarter!
's - j

[Raglet]

Originally Posted by Kitt

You really don't need an EMG/NCV redone.

it depends why you are having it done. I suddenly had trouble lifting my left leg, so I needed to have the nerves in my hip done to see if it was the neuropathy affecting my hip, or something else. It was the neuropathy. Also, having had my hands/arms done has indicated that the motor problems that I have with my hands at this stage are central rather than peripheral in nature. It has always shown that I am not far away from having neuropathy in my hands as my results are heading out of the normal range (sensorimotor axonal neuropathy).

So, sometimes it is more than just showing progression. Sometimes it is to dx what is going on, and this can need doing even once an initial dx of neuropathy has been made as not all issues can be blames on the neuropathy.

cheers
raglet

[Kitt]

Originally Posted by Raglet

it depends why you are having it done. I suddenly had trouble lifting my left leg, so I needed to have the nerves in my hip done to see if it was the neuropathy affecting my hip, or something else. It was the neuropathy. Also, having had my hands/arms done has indicated that the motor problems that I have with my hands at this stage are central rather than peripheral in nature. It has always shown that I am not far away from having neuropathy in my hands as my results are heading out of the normal range (sensorimotor axonal neuropathy).

So, sometimes it is more than just showing progression. Sometimes it is to dx what is going on, and this can need doing even once an initial dx of neuropathy has been made as not all issues can be blames on the neuropathy.

cheers
raglet

I was speaking solely about CMT and the need for more EMG/NCV testing. We already know what's happening and why it's happening. That is far different than other people with neuropathies. There more than likely is a reason to keep on doing EMG/NCV's on them. But that is not true for people with a confirmed diagnosis of CMT.

CMT is hereditary and it affects the Peripheral Nervous System (PNS) which is outside of the Central Nervous System (CNS). It is also known as Hereditary Motor Sensory Neuropathy (HMSN). You do not all of a sudden start having trouble with feet, legs, arms, hands. It usually is a slow progression.

And no, not all issues can be blamed on the neuropathy. A person with CMT is not immune to a host of other diseases as well.