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

[bradipa]

Hello everyone,

like many of us, I am struggling to get adequate diagnosis and care.

So, my neurologist/psychiatrist diagnosed me with me/cfs, using the CCC, although the medical record contains a lot of psycologizing. And she still wants me to undergo a lumbal punction in order to exclude MS. My GP likewise, since she relies on the neurologists point of view. I'd have to go through this before she would even think about therapies. (Not that I can think of anything she could offer to help me at this moment, nor that I am up to experiments in this field right now)

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.

I do not and have never presented any of the "more specific", if I may say so, MS symptoms, such as (I hope I chose the right english expressions)

• No double vision, vision loss or eye pain
• No paralysis or spasticity
• No paresthesia or loss of sensation
• No coordination problems

Whereas me/cfs explains all of my symptoms perfectly, and the cardinal symptom p.e.m. is very clear.

So, I wonder

1. Have you had similar experiences?
2. Can you at all diagnose someone with MS, if there's another disease that better explaines the clinical symptoms? I thought you couldn't anyway?
3. To what degree are my results (I'll post them extra) specific to MS?
4. What benefit you think could result from further examination for someone who suffers from M.E.? I mean, exept p.em. you can find every single symptom in various other conditions. If we were to thoroughly rule out each one, we would never be finished diagnosing. And I am sure that it's not MS that puts my life to a hold. But even if I had MS on top, I would never, ever accept the therapies offered for MS patients, as I am sure they would rapidly leave me very severe, at least.

Thank you for your thoughts
Bradipa

P.S. this is my first post in an online forum, I hope I did okay

 

[linusbert]

i personally do not beliefe in cfs as diagnosis for disease. its a syndrome with a collection of symptoms people share, not a disease (yet). but the true root cause hasnt been identified yet.
there also seams to be a differentiation between cfs and ME. where ME seams to be a more specific subset.

i personally do not like a cfs diagnosis, as in germany that means for most clinics and doctors a psychiatric or psychosomatic issue. probably also in great britain. so this might give you a false sense of "security" that you now got a diagnosis the doctors will take serious. that depends on the country and the doctors.

there are countries which recognize cfs/me as a physical issue.
the CCC mentioned is a good starting point.
https://me-pedia.org/wiki/Canadian_Consensus_Criteria

your doctor seams to try to rule out any other diseases (she imagines). then she might do the cfs route or she will go the psychosomatic route claiming all other diseases (she knows off) have been profen not to be, so it must be psychosomatic.
that is a trap IMHO.
because you can have MS and CFS at the same time. ruling out MS or proofing it, doesnt mean you dont have CFS like symptoms.

a lumbal puncture could be a useful diagnostic but only if you have a doctor which does serious testing. you can do lumbal puncture and only test for minimal things (its like a blood test) or you can do specific tests. she might test MS specific markers, and might missing other markers which might be positive for you.
so there isnt one lumbal puncture diagnostic which just solves any question. see it like a blood test, it diagnoses the things the marker she did test for would. if she doesnt test for the right markers she will find nothing.
so i recommend, if you do a lumbal puncture do it with a doctor which doesnt want to proof that you have a psychosomatic disease but more a cfs based doctor. someone who wants to find the root cause.
i had the same issue with muscle biopsy. the first clinic wanted to proof that i am a psycho, so they did cut out the muscle and did a bit of testing, but by far not the tests necessary to rule out the muscle disease i was suspected to have.
i had to do the test again with another clinic which was more serious... and they did more specific testing.

i personally belief there are multiple causes for that CFS body state. maybe a cfs clinic can help.

for MS one of the better therapies is the coimbra protokoll. which is a on physicist assisted high dose vitamin D therapy. so if you had MS you could try that (with a doctor!).
but you also can try it anyways (with a doctor ). if it helps.. you dont need any other reason.

 

[Byles]

Like @linusbert says it really depends on the doctor and the tests. You might be interested in this article on idiopathic intracranial hypertension: https://www.healthrising.org/blog/2...nic-fatigue-syndrome-fibromyalgia-long-covid/

 

[bradipa]

Thank you, linusbert, for sharing your thoughts with me.

i personally do not like a cfs diagnosis, as in germany that means for most clinics and doctors a psychiatric or psychosomatic issue.

I'm with you (I'm from Germany, too). It's just that that's the one that by far fits best.

i personally do not beliefe in cfs as diagnosis for disease. its a syndrome with a collection of symptoms people share, not a disease (yet). but the true root cause hasnt been identified yet.

That's true. I just would like to add that this is the case for many conditions, which are nevertheless seen as diseases, not sydromes. Multiple sclerosis is a good example. As far as I know, there are various theories about the pathogenese, and there is a wide range of clinical manifestations. Nevertheless, it is considered a disease, not a syndrome. And while "syndrome" might be more accurate, I think the choice of words has an impact on how seriously a condition is taken. "Syndrome" as a word is too familiar in psychiatry, if you know what I mean.

your doctor seams to try to rule out any other diseases (she imagines). then she might do the cfs route or she will go the psychosomatic route claiming all other diseases (she knows off) have been profen not to be, so it must be psychosomatic.

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.

a lumbal puncture could be a useful diagnostic but only if you have a doctor which does serious testing. you can do lumbal puncture and only test for minimal things (its like a blood test) or you can do specific tests. she might test MS specific markers, and might missing other markers which might be positive for you.
so there isnt one lumbal puncture diagnostic which just solves any question. see it like a blood test, it diagnoses the things the marker she did test for would. if she doesnt test for the right markers she will find nothing.
so i recommend, if you do a lumbal puncture do it with a doctor which doesnt want to proof that you have a psychosomatic disease but more a cfs based doctor. someone who wants to find the root cause.

These considerations are priceless, should I ever decide to get a lumbal punction, thank you! So sorry you had to go through this, though.

for MS one of the better therapies is the coimbra protokoll. which is a on physicist assisted high dose vitamin D therapy. so if you had MS you could try that (with a doctor!).
but you also can try it anyways (with a doctor ). if it helps.. you dont need any other reason.

I'll keep this in mind, thanks for the tip.

Finding a cfs specialized ( or even cfs friendly ) doctor or clinic in Germany, esp when you're basically houseridden, well... Thats the needle in the hay, isn't it

 

[bradipa]

Like @linusbert says it really depends on the doctor and the tests. You might be interested in this article on idiopathic intracranial hypertension: https://www.healthrising.org/blog/2...nic-fatigue-syndrome-fibromyalgia-long-covid/

Hi Byles, thank you for your reading recommandation.
I will have to dive into it another time, for today I'm pretty much done with cognitive activities...

 

[linusbert]

I'm with you (I'm from Germany, too). It's just that that's the one that by far fits best.

checkout Dr. Bodo Kuklinski in Rostock. He also wrote a book "Mitochondrien", great read. he has a website with publications around 10 pages long worth a read.
there is also pro mito in austria.
also Berlin has a cfs clinik which is part of a bigger clinic, dont know its name now and i dont know if they are serious or just maintaining psychosomatic diseases.

Finding a cfs specialized ( or even cfs friendly ) doctor or clinic in Germany, esp when you're basically houseridden, well... Thats the needle in the hay, isn't it

whats your geography? maybe i know some doctors you can go to... or better not go to.

this is the case for many conditions, which are nevertheless seen as diseases, not sydromes.

thats a problem. i think they are also deliberately fooling people at time s to give them some disease like diagnosis so they got any diagnosis, but the insurance and the doctors know whats going on.
ive heard people running from doctor to doctor with a condition, not that bad actually, but annoying and they cant find a explanation and then this one doctor finally gives them a nice thing like Herzneurose or Reizdarm (ibs). Sounds medical, but in fact this is a flag which tells any other treating doctor that he has not do anything because you are a psycho now, and as psycho yu got the incrdible blessing that you cannot get any real disease. heartattacks, brainbleeding, broken bones like feet, , pneumonia. you are immune now, you cannot have any of those anymore with that diagnose, but you can still die from them. its incredible, how the medical community comes up with this bullshit and still are thinking they are doing science based medicine is beyond me.

adly, 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.

do not ever go to that doctor again. write her a letter that she is now bound to "ärztliche schweigepflicht" and you tell her to not share your files with any one and not communicate with anyone.
also tell her to give out your full file (patientenakte) including handwritten remarks .
ive been to that kind of doctors multiple times and i know to run the moment they show their true skin. you can stand up the moment she says someting with the word psycho.
do not do the lumbal puncture at that doctor, this is wasted time and resource, she will not do a serious panel and check for things she should. find a serious doctor.
its like with the clinic which did my first muscle biopsie, they said in advance we have to go "zweigleisig" meaning doing psychological treatment and normal diagnostics. there is no such thing. if a doctor beliefs you have something physically he will do the diagnostics and never mention psycho. they only do so if they think its 100% psycho and to fool the patient with this kind of dishonest rhetorik.
the clinic doctor was so convincned of this, he actually faked diagnostics. instead of sending a urine sample to the metabollic laboratory to do special diagnostics they "lost" the sample but told me that everything came back fine. this only came out because my girlfriendd worked at that clinic and called the colleagues at the metabollic laboratory about the results and they said they never got any sample. thats borderline criminal.
supposed to be one of the best univerisity clinics in germany. the doctor was the chef of the clinic himself.

 

[Wayne]

What benefit you think could result from further examination for someone who suffers from M.E.?

Hi @bradipa -- Quite honestly, a lumbal punction feels like an option that is best placed on the "back burner". I can see no reason(s) for urgency in making this decision, and plenty of reason(s) for caution. Doctors making suggestions like this almost never understand how such procedures can permanently affect someone with ME/CFS.

Plus, they don't have to live with the consequences, the patient does. I consider this a MAJOR health decision, and have already decided I would never get this done for myself. But that's me, others would make a different decision. I think the operative word is "patience". Wait until it feels "right", if that ever happens.

 

[bradipa]

checkout Dr. Bodo Kuklinski in Rostock.

Thanks for the tip, linusbert.

whats your geography? maybe i know some doctors you can go to... or better not go to.

I am living in NRW.

so Berlin has a cfs clinik which is part of a bigger clinic,

That's the Charité with professor Scheibenbogen. They do not accept people who don't live in Berlin and surroundings anymore, also, I couldn't do the trip.

supposed to be one of the best univerisity clinics in germany. the doctor was the chef of the clinic himself.

Again, so sorry. Which clinic was that, if you'd like to tell?

 

[Zebra]

Hi, @bradipa

I wanted to share a link to another thread about lumbar punctures that may be of interest to you. It's not specific to MS, but covers various ideas and opinions on a lumbar puncture.


https://forums.phoenixrising.me/threads/lumbar-puncture-can-it-be-revealing.92350/

 

[bradipa]

Hi @bradipa -- Quite honestly, a lumbal punction feels like an option that is best placed on the "back burner". I can see no reason(s) for urgency in making this decision, and plenty of reason(s) for caution. Doctors making suggestions like this almost never understand how such procedures can permanently affect someone with ME/CFS.

Plus, they don't have to live with the consequences, the patient does. I consider this a MAJOR health decision, and have already decided I would never get this done for myself. But that's me, others would make a different decision. I think the operative word is "patience". Wait until it feels "right", if that ever happens.

Hi Wayne, thank you for sharing your opinion. That has been pretty much my gut feeling from the beginning - never ever. I really can use the backing.

can see no reason(s) for urgency in making this decision, and plenty of reason(s) for caution.

It's the doctors who urge me . They may mean well, but it feels a bit like my GP and my neurologist were ganging up against me. And it feels a bit like blackmail: you want us to take you seriously? Maybe we will, IF you undergo this procedure...

 

[bradipa]

Hi, @bradipa

I wanted to share a link to another thread about lumbar punctures that may be of interest to you. It's not specific to MS, but covers various ideas and opinions on a lumbar puncture.


https://forums.phoenixrising.me/threads/lumbar-puncture-can-it-be-revealing.92350/

Hi Zebra, thank you for the link. I just had a peak, and yes, it's of interest

So, it's "lumbar puncture", in english. Evidently, if one does not use the right vocabulary, one may not find what one is looking for...

 

[WinterWren]

In Canada at least I’ve never heard of a neurologist urging a patient to get a lumbar puncture based on ME symptoms alone. Was there something in the neuro exam that made them suspicious? Or on an MRI?

For me it was both, my reflexes were faster (something like that) on one side of the body and then an MRI showed the right type of lesions, so then it was recommended to have a LP. I would definitely want to know the reasons behind the suggestion before deciding.

 

[wabi-sabi]

MS and ME/CFS are not that similar in terms of symptoms, other than severe fatigue. For example, my neurologist looked at me for 30 seconds and ruled out MS. I don't mean he was dismissive- I mean if you know what ME/CFS and MS really look like in a person sitting in front of you, they are like apples and oranges.

This leaves you with a couple of possibilities. 1) Your doctor isn't knowledgeable enough about either disease to make a diagnosis on physical exam 2) You might have symptoms of MS and this would be important for you to know and get treated, because MS is both serious and treatable. 3) There is not one specific test for MS. A lumbar puncture can be part of this process, but so are various blood tests and an MRI. These might be more doable for you and still give your doctor the info she needs. As far as I know lumbar puncture is not part of a normal diagnosis for ME/CFS- it isn't necessary and may not show anything useful. It is useful if your ME/CFS diagnosis is incorrect and there is really something else going on. 5) You need to weigh the possibilities that you do or don't have ME/CFS before you get the puncture. If you don't have ME/CFS lumbar puncture may help. If you do have ME/CFS then it won't and will probably PEM you.

I would ask your doctor to explain her thought process and why she is thinking ME vs MS. If she has good reasons for thinking you might have MS (not that she doesn't know the difference) then I would consider the puncture. It's true you don't have the typical MS symptoms, but there may be some more specialized MS symptoms you have that your doctor knows about. If she's got a good rationale why you might have MS, then you can also ask if there are other less invasive tests that would give her the info she needs but be easier on you.

I don't know numbers on how many people have both MS and ME/CFS, but it seems like that would be more rare than having just one disease. You really want to know which of these you have to get the right treatment.

 

[bradipa]

In Canada at least I’ve never heard of a neurologist urging a patient to get a lumbar puncture based on ME symptoms alone. Was there something in the neuro exam that made them suspicious? Or on an MRI?

For me it was both, my reflexes were faster (something like that) on one side of the body and then an MRI showed the right type of lesions, so then it was recommended to have a LP. I would definitely want to know the reasons behind the suggestion before deciding.

Hello WinterWren,

Neuro exam: no. MRT (which I also felt myself somewhat forced into and led to a spectacular crash): Circumscribed unspecific medullary layer signals in FLAIR. I'm no medical pro, so I don't know if my translation is correct, and of course I don't understand what this means. But the more I think about it, the less I think it's important for me to understand. As long as I do not suffer from sympoms that don't fit me/cfs.

Thank you all, folks, this helps a lot!!

 

[Zebra]

Hi Zebra, thank you for the link. I just had a peak, and yes, it's of interest

So, it's "lumbar puncture", in english. Evidently, if one does not use the right vocabulary, one may not find what one is looking for...

It's also called a "spinal tap" here.

Best of luck to you in your medical decision making!

 

[bradipa]

if you know what ME/CFS and MS really look like in a person sitting in front of you, they are like apples and oranges.

That's what I thought. I've known some people with MS in my life (my best childhood friend is one of them). I am no doctor, but from my point of view, my condition had and has little to do with theirs, exept, like you said, the fatigue... And maybe the fact that they sometimes need a wheelchair, too (some things may look similar but when you observe and listen you quickly get that's mostly just apparences). While for the last fifteen years I was desperately searching for an explanation for what was going on and investigating several possibilities, it never even occurred to me to consider MS, despite - or because of - the fact that I've had seen it in different forms. I, for myself, have been sure about the me/cfs thing pretty much since I knew it exists and has a name, well, seversal names. I considered MS, because I'd read that this was an important differencial diagnose, then ruled it out in no time.

Thank you for your thoughts, wabi-sabi!

 

[bradipa]

So, I had a long phone call with my GP today, which was exhausting, but went pretty well. She still points out that she thinks it's important to have a lumbar puncture (that's her right and her responsability), but she respects my decision not to. And she is still willing to treat and support me. That's a big relief, since I don't think I could find better than her in my town.

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. NB I don't know for other countries, but in Germany once a report is written, exept for some exceptions, you don't have the right to have it changed, so it would depend on her goodwill.

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... Apart from the fact that I am not doing well enough to go through this all over again any time soon. So, hopefully my neurologist will adapt her report , otherwise I think I'll have to go with it as it is, although it leaves me with a bad feeling.

Thank you all for your support . I felt pretty overwhelmed, and this helped me so much!

 

[wabi-sabi]

@bradipa I'm glad to hear you are feeling a bit better. It's so hard to know what to do with these illnesses. I am curious though, did your GP say why she thought the lumbar puncture was so important?

 

[bradipa]

@bradipa I'm glad to hear you are feeling a bit better. It's so hard to know what to do with these illnesses. I am curious though, did your GP say why she thought the lumbar puncture was so important?

It's just what she learned in medical school, something about "classic" neurological diseases, nothing about me/cfs* - plus she aimed to keep my hopes up: maybe you have something with therapy options... I explained to her that, while I don't really believe that there's a remedy right at hand, I'm still not hopeless, I just choose to go with the odds and not to put my hopes up too high. It's possible that I get to do little walks or use the bus again, it's possible that I find something that alleviates my pem, it's possible tomorrow I wake up with little pain, it's possible Sunday I can join my family for a stroll in the park, I hope for this kind of things - many little hopes instead of one big one.

*But she has another me/cfs patient, and she is open to new ideas. That's something else that makes me hopeful.

 

[wabi-sabi]

*But she has another me/cfs patient, and she is open to new ideas. That's something else that makes me hopeful.

Yes, that sounds very positive!