Do I really have to undergo a lumbal punction in order to get appropriate care as an me/cfs patient?

[Stretched]

The thing is, if I undergo this exam, I will sure as hell get a massive crash, which might very well annul my chances of getting somewhat better and even reduce me to "very severe". I already had a three day hospital stay and an MRT (ambulatory ) this year, which both led to crashes I still haven't recovered from.

What conundrums we suffer, primarily from opinions, et al from the medical community... . I have seen a couple of neurologists over the years in search of more definitive science for my MECFS… . Bottom line is that I am better off NOT doing the epidural tap, especially considering the risk of things getting worse and they can become worse with the otherwise best of intentions.

I found that one of these doctors actually became an MECFS specialist some two years after my inquiry, which was as assemblage of annotated research articles. IOW, he learned what he eventually knew from a help-seeking patient. I didn’t particularly find this comforting if not unethical, but hey, we can all be “specialists“ in any field we choose.

Ironically, both opined they would likely NOT find much excepting residual tiny paths of micro strokes??? This sounds like a certain CYA tactic… . So, again amother bottom line - why go probing the devil you don’t know, with paralyzing risks when the one you know can be dealt with WTH palliatives - at least for the time being?

 

[bradipa]

Sadly, I think I'm already down the psychosomatic road. She seems to think my reduced activity level results from a lack of energy/motivation (in german, "Antrieb"), and I can't seem to make it clear that, first, I have plenty of motivation for doing things, I am doing whatever I hope I can do without overexerting, that's my body that doesn't play along, and second, I have to pace. That actually hurts. She gave me the official diagnose, though.

As for my neurologist /psychiatrist, my GP proposed I wrote her a letter and kindly asked if she could change the passages I thought were misleading. I think that's the best, maybe the only way to go, because I need this report in order to get the help I, and we as a family, need right now, not in the far future. Because, you know, finding a new doctor, getting appointments, getting diagnosed, get the reports...

So, I wrote said letter to my neurologist/psychiatrist, doing a bit of explaining and kindly asking her to change the energy/motivation thing. She answered me via email, she wrote that she could see my point and she would actually change her report!!!

So, after a two week's wait I found an envelope in my mail, only by mistake they sent me the original letter again which implicates my problem might be clinical depression. I had to write there again to tell them, now they answered - and sent me the corrected version, but this time only electronically, unformated, plain text not even attached but in the mail itself, without signature... I can't use it like this. Now I have to ask them again. What a waste of time and energie.

I'm reallly thankful, don't get me wrong, there probably aren't many doctors who would have changed that letter - It's just, you know the feeling of frustration you get sometimes, like, why can't things go smooth for once?!

 

[linusbert]

She answered me via email, she wrote that she could see my point and she would actually change her report!!!

now thats nice!!

i hope she changed it in your files too. not that you get now that quirky version, and everyone else the other.
you might request your patient files in a few weeks and check.

 

[bradipa]

i hope she changed it in your files too. not that you get now that quirky version, and everyone else the other.
you might request your patient files in a few weeks and check.

Good thinking, thanks, @linusbert !

 

[bradipa]

now thats nice!!

Isn't it!