Usefulness of nasty tests (biopsy, spinal tap)

[ptich]

How many of you, or somebody you know, been diagnosed with something other than ALS/MND as a result of a muscle biopsy or a spinal tap ?

I am asking because it seems (though I may be wrong) that the best scenario with a muscle biopsy is that it does not find anything, and the worst - it finds ALS/MND or makes this diagnosed more likely. As far as a spinal tap is concerned, I never heard on this forum that it found anything at all.

If the above is true, then I would never agree to undergo any of these tests.

 

[elemkay80]

I had a spinal tap done in an effort to rule out. It came back absolutely clean, which didn't help my situation. Also, I must say it has got to be the most unpleasant thing I've ever experienced. Not so much the actual procedure, but more the ensuing spinal headache that had me bedridden for a week. I go to Duke in a little over a week for the 2nd opinion and have already told myself they can repeat any test they want EXCEPT that one.

Don't think that helped you any, but I felt like sharing!

 

[wright]

Ptich

Muscle biopsies can differentiate between damage to muscle from denervating conditions (there are many, many different denervating conditions, syndromes and diseases: some treatable and some not) and myopathic conditions (there are many, many of those as well). . . and as you said . . . it can come-back completely clean. They are not typically done as an inital test, though.

Spinal taps are done for a multitude of different reasons, one of which is to see if there is any type of autoimmune disease / syndrome by looking for certain antibodies and other proteins in the fluid. Typically if you follow doctor's orders after the tap, you don't suffer any ill effects. Of course, there are always exceptions (elemkay sounds like he/she had some problems).

 

[ptich]

write, thank you for sharing what exactly these 2 tests are looking for. But my question was simpler than that: it was not about what these tests can find THEORETICALLY, but what PRACTICALLY muscle biopsy found except ALS/MND, and spinal tap found at all. That's why it will be informative to listen to those who went though these procedures.

 

[Zaphoon]

Spinal Tap

I, for one, am hoping to have a spinal tap done at some point in the near future to see if what I have is some variant of MS. I know that the MRI is a tool most widely used for this purpose but Primary Progressive Multiple Sclerosis evades MRI due to its location. They usually find that via spinal tap.

I've had just about every test done except muscle biopsy and spinal tap and really don't relish undergoing either but see it as necessary at this stage.

In my case, my muscles are continually getting worse, slowly. I will suffer what ever procedure at this point to find some answers.

Zaphoon

 

[elemkay80]

Zaphoon,

Buy some Excedrine! It saved me. Primarily the caffiene.

I absolutely hate narcotics, so perhaps my experience would have been slightly better had I relented and let the doc give me the Darvocet or Lortab or whatever he had offered. But I have a high pain tolerance and felt I could just power through by staying hydrated and laying flat for a couple days like I was advised. No go. Still didn't go for the narcotics (I'd rather treat the cause of the discomfort than just mask it) but I read how caffiene helps to increase the pressure and shunt more CSF to the brain, thus relieving the headache - it really did! Within about 30-45 mins of chugging a bottle of Coke and taking 2 Excedrine for tension headaches (just tylenol and caffiene, no aspirin), I was happy. Still had a headache, but we went from an 8/10 to probably a 3/10. I could then focus better on hydrating and processing the crappy news I'd just been given.

They also have a procedure called a blood patch they can do if nothing else relieves the headache.

I'm glad I had it done, just in case it might have found something else to rule me out, but as it was normal, no need to have a 2nd one.

~Michelle

 

[patricia1]

I Had A Spinal Tap And It Wasnt Bad At All
Reseach The Doc Thats Doing It.
Its All About Experience

Pat

 

[Zaphoon]

Michelle,

Thank you for the tip on the excedrin and caffeine. I'm a coffee nut, anyway. There are some pains that I do not tolerate very well like the kind that go all the way to the bone (had 5 impacted wisdom teeth removed back in 82 - worst pain ever. It laughed at the darvon and perkoset I was given).

Zaphoon

 

[trying to stay positive]

FIVE wisdom teeth? Well, no wonder you're such a smartie! OK, I was gonna say smart a$$, but figured I had better behave!

 

[Zaphoon]

Pat,

Thanks for your comforting words regarding your experience with spinal tap stuff.

Linda,

Yep, I know! Extra wisdom teeth run in my family. Some of my brothers and sisters have had as many as 6 removed. I had one piggy-backing another and they left a huge canyon in my mouth when they were ripped out. OOOOH! Pain flashbacks!

Z

 

[kevinw]

Blood Patch

I had my spinal tap done on a Tuesday and did not have a great experience during or after. First during the procedure the needle or whatever they stick in hit a nerve near the spine and my leg started jerking around and got really tight. Then it slowly started to calm down to just a vibrating feeling. So after the procedure I tried taking it easy and laying flat on my back (I felt fine when I was down), but if I attempted to get up at all it was the worst headache I've ever felt. Finally, on that Saturday morning I attempted to get out of bed and couldn't even stand with the pain. My wife called the doctor and he had me come right in for the blood patch. Even before he did it, we were in the waiting room (I was laying across the chairs) at the hospital and he was still talking about giving it a few more days (well, I needed to get back to work that Monday and didn't have time to wait and see). Long story short, he did the blood patch and within an hour I was walking out of the hospital with not one bit of pain. There is no reason that they wait for days once that headache starts, the pain is terrible.

 

[Marjorie R. Wilcox]

spinal tap and muscle biopsy

Rick was scheduled to have a spinal tap and muscle biopsy to better diagnose ALS, but it was canceled. When his main neurologist thought it over, he decided that the tests already done and Rick's symptoms were conclusive enough. Besides, Rick was dealing with the leg injury from the explosion, and he has limited muscles on that leg. They didn't want to take a sample of what he needed. Also the neurologist said Rick had suffered enough and didn't want to put him through the spinal tap just to satisfy the diagnosis further.
Rick has more symptoms as time goes by. We're glad he didn't have to have those tests too. We're accepting his life as is, and making many happy funfilled memories... and he is getting spoiled.
I had a spinal for the birth of my first baby. Afterwards I had vicious headaches for two weeks. I would be hesitant to have another without real cause. If you find out for sure it is ALS, what good will that do? It would be nice to find out if it isn't though.
Regards to all out there! Marjorie

 

[wright]

ptich

Muscle biopsies and spinal taps are not typically the first tests docs do because of the invasiveness of the procedures. Most of the time, they are actually a last resort because the docs simply cannot determine what the diagnosis is or feel they might know what it is and the results would be additional pieces to the puzzle.

The information they both shed is not theoretical. They can be very useful tools and certainly are not relegated to being used just for the diagnostic procedures of ALS.

 

[ptich]

write, you're certainly right that the tests could provide a very valuable information. The question is - has they ever provided this information in real life ? From the answers (and from the lack of contrary answers) it seems that they never did, at least for folks on this forum or anybody they know, which gives a pretty good statistical slice... So, considering intruisiveness of the tests, are they really worth it ?

It seems that Marjorie's neurologist was a really compassionate guy, and apparently not all of them are...

 

[wright]

ptich

I don't think this forum is a good "statistical slice" of those needing medical procedures at all . . . not even close. First of all, ALS is a rare disease . . . many (not all) of the differential diagnoses are also rare . . . and many others on here don't have a darn thing wrong with them (they just think they do).

Those tests most certainly shed light on many conditions / syndromes / diseases . . . or lack thereof. Do you honestly think that insurance companies are going to pay for tests that don't have any merit?