Sorry, need a little help again

[notmyself]

Hi everyone,

It's been almost a week since i've been diagnosticated.. I do feel horrible,something is really bad with my health..but i start to think the doctor that give me the diagnostic was a fraud..i pay him so much money and frankly i don't understand his explanations..i start to think he just wanted to get rid of me...I explain to him al my symptoms weakness,fatigue ,muscle twitches ,bad sleep etc..wich are caracteristic..but i also tell him that i don t have PEM..there is no evident worsening of my symtomps after exortion..i feel bad like i feel everyday..another curios fact was that my Basal metabolic rate was very high..wich is not a good thing ,but is not very CFs specific,quite the contrary..Another point and probably the one that give me the msot to think is the CPEt test...my vo2 max was 31,7..very low for my age( should be above 40 ) ,but not that low..and i didint reach my max heart rate ,and the vo2 was in continous increasing wich means that was not my vo2 max ..i just could not reach it that day..My Lactic threshold, anaerobic threshold..was at 164 HR at a VO2 of 26 ml/kg/min wich is not bad i think..After i told him all my symptoms wich are indeed caracterisc to cfs and with the low vo2 max he concluded that i have cfs.HE say that in mild cases Pem is not mandatory,is that true??,,and what about the anaerobic /lactate threshold result wich should be much lower..I Really hate doctors..is so hard to find one that actually knows what are they doing or cares..

 

[Invisible Woman]

@notmyself, I am sorry you are feeling so rough. Being newly ill / diagnosed is a very confusing and distressing time.

Regarding PEM - many state that it is/should be a core symptom when diagnosing, but some of the fairly widely used diagnostic criteria don't regard it as essential to diagnosis.

While I believe my own diagnosis is correct, I think it is reasonable for many to be uncertain of their diagnosis. In the UK, it is estimated that over 40% of patients are misdiagnosed and have some other, often treatable, condition. Not surprising really, as if they do not know for sure what ME is, then how can they know for sure that this is it? The more knowledgeable, experienced and open minded the doctor the better.

I don't know where you are, but in the UK the ME Assoc. produces a booklet for clinicians which provides a list of diseases which should be ruled out before a diagnosis of ME or CFS is considered. Your local association might produce something similar.

I would contact my local association/group and investigate what feedback, if any, they have about your diagnosing doctor and if there are any others you might consult for a second opinion.

Failing that, all you can do is arm yourself with as much information as possible, see what advice you find helpful and make good use of that. In particular, make sure you understand about pacing and management. It is possible for mild sufferers to become more severely affected if they are not educated and don't manage their condition effectively.

 

[Cheesus]

HE say that in mild cases Pem is not mandatory,is that true??

This is a sticky issue. A lack of PEM would mean you likely do not have what people refer to as ME, but it could still mean you have a CFS-type condition.

There is no consensus about how these two conditions relate to each other, but my perception of it is that CFS is a broad umbrella for a range of fatiguing conditions, whereas ME is a specific condition that sits within a subcategory of the CFS umbrella. Other people will give you a different opinion regarding how or if these conditions are related.

Or it could be that you have something else completely different that does not actually come under the CFS umbrella. I would encourage you to seek a second assessment with someone who actually specialises in CFS.

If it is the case that you have a non-specific, CFS-type condition, a lack of PEM would actually make me more optimistic that you could eventually stage a natural recovery. People who claim they have recovered from ME tend to be those people who have questionable diagnoses.

 

[Mohawk1995]

I can tell you that we chased "atypical migraines" with my son who eventually was diagnosed (by Dr Lerner) with moderate (could have been labeled mild at times) ME/CFS. The key defining feature was PEM and non-restorative sleep. The "migraines" eventually lessened, but these remained. He was well enough at times to play baseball, but in bed at other times especially with PEM.

I agree with Cheesus. Definitely get this checked out more thoroughly by an ME specialist. It could well be in the same grouping of conditions, but lack of PEM would have me question some other mechanism behind your symptoms. I also agree that not having ME/CFS (if that is indeed the case for you) could work in your advantage.

 

[notmyself]

This is a sticky issue. A lack of PEM would mean you likely do not have what people refer to as ME, but it could still mean you have a CFS-type condition.

There is no consensus about how these two conditions relate to each other, but my perception of it is that CFS is a broad umbrella for a range of fatiguing conditions, whereas ME is a specific condition that sits within a subcategory of the CFS umbrella. Other people will give you a different opinion regarding how or if these conditions are related.

Or it could be that you have something else completely different that does not actually come under the CFS umbrella. I would encourage you to seek a second assessment with someone who actually specialises in CFS.

If it is the case that you have a non-specific, CFS-type condition, a lack of PEM would actually make me more optimistic that you could eventually stage a natural recovery. People who claim they have recovered from ME tend to be those people who have questionable diagnoses.

that's the problem..there is no such thing in my country..this doctor was a neurologist aparently knowing a thing or to about cfs..All the other doctors will called this neurastenia,wich is a total bulshit for me..and give antidepressants...i wish i have the money to see a Me specialist in uk..but i don't right now..so i'm stuck with this idiots doctors from my country..there was one that test me for polio virus?!?..how on earth will i have a virus that was eradicated a long time ago .and i was also been vaccineted for it when i was kid,..is just ridicoulous..

 

[Mohawk1995]

@notmyself That is a challenging question indeed. If you have had all of the routine blood tests for general health (hemoglobin, WBS, Thyroid, basic blood chemistry and the like) and they are all negative (I am assuming this to be the case) then that is relatively good. The fact that you do not have PEM does not mean you do not have ME/CFS or something like it. Just need to be sure you have been thoroughly checked out for any other disorder that would cause fatigue that is easier to diagnose and treat.

Keep reading and checking this web site and let everyone here know if something changes. There is a wealth of knowledge here. Hopefully soon someone where you live will get some training, do some reading and join the ME team! Even still, I would stay active, but avoid over-exerting yourself until you have a clearer picture of how your body will respond.

Sorry. Not a lot of help I'm sure. There are others here who will give you advice I am sure.

 

[Shoshana]

Hi, @notmyself

The doctors can be very confusing, and being ill can be so confusing, too.

It is hard enough feeling sick all the time, but also not knowing for sure, what you have,
or what would be helpful treatment, is so much worse.

I am glad you talked to us about it.

Sorry for what you are going through.

I hope very much, that something unexpected, will change and improve, for you!