Post Exertional Malaise - is this what it is?

[JoanDublin]

Your son.. his symptoms say probably a mitochrondrial disorder to me.. has bowel issue (severe constipation I think is more common in mito disorders then ME thou it does happen in us too) and then there also his hearing issue (very common in mito) . Thou ME seems to also be a mito issue, I think one can still see the signs that more mito stuff is going on then typical ME cases.

I know you say your son understands pacing but I personally from what he's done, I dont think he has fully understood it and the consequences of not doing it properly. Usually when one is pacing properly and feeling better, one knows to slowly increase activities over time, one takes in consideration how much one did the day before and how much one will be doing tomorrow, its not just about how much one feels one can do right now. With good pacing, the waters are always being tested one could say before diving in the deep end and just hoping for the best.

If one is feeling a bit better, one may go for a 10min walk (or only increase activity by several minutes, depending on how severe someones ME is) ... several days later it may be a 15min walk instead of 10mins if that 10 mins didnt make one sick etc. To suddenly go for a 40min walk and then play football on top when your son hasnt even been well enough to go to school this year, is a MASSIVE leap and not pacing. (I think most of us would of been shocked to read he went and suddenly just tried to do that.. understandable thou if he didnt know).

Doing something like this can someone MUCH WORST and they may not recover from it, a huge increase like that can send someone into a worst baseline with this illness. I really really hope your son hasnt done this! His best chance of recovery is probably in his younger years so its important he takes great care with activity increases so that he keep heading in the right direction for improvement and not mess it up. (most of us have experienced really messing up our improvement at some time or another).

Sudden improvements can be uncommon and should be really treasured like gold and at those times we need to be very careful not to blow our sudden turn into better health by overdoing it and loosing the improvement.

I know you have some money issues but its also probably essentail to get him to a ME specialist, otherwise he could end up having this illness for life and need care, going to specialist greatly probably increases his chances of maybe recovering. The sooner you do this, probably the better. If he gets sicker he may be too sick to fly him anywhere at all to get help so you need to do so now (many of us are too sick to fly).

I could only say bad things about his doctors from the things you've said, sounds like he hasnt had enough tests!!. and extensive illnesses should be considered as a whole.
...........

I also dont think his current bowel program sounds too good with having to take enemas, to me says he probably hasnt had things managed as well as they could be.

Both me and my daughter have had severe bowel issues to the point where we needed daily enemas but we both are off of these with good bowel treatment. (my bowel issues even prolapsed my bowel at one point cause I hardly had any peristalisis, my daughter has a spinal issue so had her bowel affected throu that). Good bowel specialists have both of us not needing enemas no more (we both had difficult cases which werent easy even for the specialists, the normal bowel laxatives did nothing at all for me at even large doses and in combos.

My daughter originally had to be hospitalised a lot for her bowel before this was sorted due to impactions etc, it took them ages to work out her treatment (she had to go onto 3 different things for her issue).

Both of us due to the treatment we had for this, we both have better functioning bowels and I dont even need to take anything or mine any more (I do think she's doing much for hers now to and may not now be havin to take meds). Im just telling you all this as there may be some room for improvement there. (I suspose that if your son does have mito disorder that treating that may help his bowel too?).

I wish you and your son the best, I really hope he starts to improve from that crash soon. (Ive had severe crashes last 3 weeks, often crashes that bad will leave me at a slightly lower baseline then before). Make sure he is taking it very easy, he should take care not to exert himself at all if he can still he starts improving from that crash, even if it means not doing basic things.

Thank you very much for your comprehensive reply. I agree with you about his 'real' understanding of pacing. At some level he knows what he needs to do but I think that day was a reflection of his frustration, combined with a need to be 'normal' with his friends. He knows he is paying the price so I hope we can move on from here having learned a hard lesson. He is normally very good at pacing himself especially after he met with Dr. Speight and the latter told him how important it was.

There is little or no understanding of the condition here in Ireland. There are no specialist centres and no one within our health system that I can find that has any specific interest or knowledge of the condition. There is lots of sympathy though so Im trying to build on that, educate myself and in turn educate his docs (without pissing them off). Its a balancing act.

My plan is to get as much testing carried out here as I can. I have to do that, on the one hand, strategically like you say. On the other hand though I owe it to him to advocate as strongly as possible - even if his docs think I'm a bit fanatic. Not saying they do, but it could be borderline!! I think you always run the risk of the wrath of the medics if you are pushing them hard.

I am trying to compile a list of tests that I believe should be carried out and Im trying to research that now. Some of them (not many) will already have been carried out and I will ask his GP for copies of those results so that I can build a file on them. Im hoping to get to Belgium to see KDM at some point and the more tests I can get done here, the less expensive it will be. I'm an amateur at all this and I get confused with the tests, results, treatments, etc etc so my head is mush right now. I've made an appointment with his doc for tomorrow so I need to have my ducks lined up before I go in.

I had wondered about a mitochondrial disorder too but is that not inherited? His illness was precipitated by him contracting EBV (misdiagnosed by his doctor by the way), viral pneumonia and chickenpox in May/June 2012 so because of that I was dismissing mito disorders? Maybe I'm wrong?

Im very interested in your recovery from your bowel issues. He has been left to manage his bowel issues by himself to be honest. He uses enemas and sometimes a Peristeen Anal Irrigation system. He has three monthly reviews in the hospital and as long as his impaction isnt building up they simply check him over and send him on his way until the next review (or the next critical time when he has to be admitted for bowel evacuation if necessary).. He has managed to keep himself out of hospital as much as possible. Last time he was in was March of this year and before that it was October of last year.

 

[JoanDublin]

Have you considered consulting wit Dr Rodney Ford ? He's a pediatrician and gastroenterologist. His info is on the web. Tc. X

No I hadnt heard of him. I will check him out. Thanks

 

[JoanDublin]

@JoanDublin,
Have you managed to get your son tested for some form of orthostatic intolerance? It could be causing or exacerbating a number of his symptoms. Extra fluids and electrolytes can help, but many PWME need medications as well.

Have you seen the ME/CFS Primer for Clinical Practitioners? In my opinion, it's not perfect, but it's a good place to start for symptomatic treatments. Section 5:8 Management of Related Conditions might be particularly helpful. It could give you a list of conditions to be investigated for your son.

I'm not sure how things are in the Ireland medical world, but in the US I wouldn't recommend patients tell GPs they think they have ME/CFS when asking for tests because it seems to shut down doctors' brains. I think it's safer to go in with the clear list of symptoms specific to a single condition. A mixed bag of symptoms seems to set off a hypochondria alarm in doctors. Mostly doctors are trained to deal with no more than three symptoms per appointment, which as we all know, is ridiculously small for PWME. But if we want acceptable treatment from doctors who are not ME specialists, we have to act strategically. That means we have to work within their system as much as possible, even if it means making multiple appointments and/or seeing multiple doctors.

My daughter was 12yo when she first developed ME and 17yo when it got really bad. Now I'm tutoring two young men, 13yo and 16yo, who (we believe) have ME and are heading to INIM at the end of the month to get specialist treatment. I really empathize with what you're going through with your son. It's hard to watch kids try to cope with this horrible illness.

Thanks for that link. Will have a good look through it.

He has been diagnosed already with ME/CFS. It started with a diagnoses of Post Viral Illness (which is what the hospital calls it) but has now moved to CFS (which is what his GP calls it) to M.E. which is what Dr. Nigel Speight calls it.....

 

[SOC]

He has been diagnosed already with ME/CFS. It started with a diagnoses of Post Viral Illness (which is what the hospital calls it) but has now moved to CFS (which is what his GP calls it) to M.E. which is what Dr. Nigel Speight calls it.....

That's too bad unless your GP understands that ME/CFS is not a psychiatric condition. Is the GP willing to do the necessary tests for orthostatic intolerance, endocrine issues, and so on? We have a problem with that here once the "CFS" diagnosis is official -- the GPs say those tests are not recommended for "CFS" and it's no use talking to them about symptoms after that. It's like they've gone deaf.

 

[JoanDublin]

That's too bad unless your GP understands that ME/CFS is not a psychiatric condition. Is the GP willing to do the necessary tests for orthostatic intolerance, endocrine issues, and so on? We have a problem with that here once the "CFS" diagnosis is official -- the GPs say those tests are not recommended for "CFS" and it's no use talking to them about symptoms after that. It's like they've gone deaf.

I'm not sure what she will say but my plan is to try and challenge the diagnosis on the basis that not everything else has been excluded. She will probably think I'm mad, but hey ho....no harm in trying eh?

The GP is fairly good...clueless but supportive if you know what I mean. I don't believe she views it as a psychiatric condition, well at least not totally. Jury is out a bit on that for me.

Is there a thread or info somewhere which gives a basic list of conditions/tests which should be looked at so I can start a check list? Anywhere I've seen information on this it seems to be an overwhelming amount of tests some of which I don't understand so would be useless of me to try and ask for them! I will start my list with tests for orthostatic intolerance although I don't think it's a huge issue for him. He does have really bad balance issues in that he simply cannot walk a straight line without veering wildly to the side. Is that part of it do you know?
Thyroid was ruled out early on as an issue so that's one down at least!

Sorry for so many questions...

 

[leela]

One of the very basic first tests a neurologist uses is to see if you can walk a straight line. If your child cannot do that without veering wildly, I would think that some kind of further neuro testing/imaging would be obvious--unless he has labyrinthitis or something.

Would Dr Enlander in NYC be able to refer you to a specialist in Ireland? I just wonder if, being Irish, he is in touch with colleagues there.
Could Dr Myhill's office suggest a list of useful tests to your current doctor?

Just wildly brainstorming over here.

 

[JoanDublin]

One of the very basic first tests a neurologist uses is to see if you can walk a straight line. If your child cannot do that without veering wildly, I would think that some kind of further neuro testing/imaging would be obvious--unless he has labyrinthitis or something.

Would Dr Enlander in NYC be able to refer you to a specialist in Ireland? I just wonder if, being Irish, he is in touch with colleagues there.
Could Dr Myhill's office suggest a list of useful tests to your current doctor?

Just wildly brainstorming over here.

Oh please brainstorm away to your hearts content . Every suggestion is welcome. That's not a bad idea about dr. Erlander. Hadn't thought of that although I think he is from Northern Ireland which is under UK jurisdiction. Still, he may know someone here.

 

[JoanDublin]

Well I went to the GP and had a long chat with her. It was good, I think. At least she agreed that she would arrange other testing, particularly the symptoms that suggest neurology issues. She also agreed that she would work with me to systematically go through as much as possible to rule in or rule out other conditions.

She did ask me not to rule out the possibility of trauma as being an underlying cause and while I genuinely don't think it is, I agreed that I would be open minded about the outcomes if she promised she wouldn't try to funnel us down a psychiatric road and she said she would absolutely not do that. He is my foster son and was subject to trauma from abusive parents as a very young child, although he has received very good therapy for this and is really an all round very confident and well adjusted young lad. Anyway, I'll keep an eye to make sure it doesn't get dragged off into the realms of psychiatric issues!! She did say that she absolutely felt that CBT would be of no use in his case so that's good! She also agrees that he doesn't have psychiatric issues at all. It's just that she has a special interest in trauma and the impact on the body of it.

So a mixed bag, but she has promised to comprehensively review his case over the coming days and we can start ticking off things one by one to see what might show up. So any advice from you guys on testing would be marvellous. What I will do is put up a separate post later listing his current symptoms and maybe some of you, given your experience, might throw in a thought or too as to what might be worth testing for? Any help at all will be very much appreciated. Thanks a million!

 

[xchocoholic]

Balance problems can be from ataxia. You could do the Rhomberg test on him yourself. Just be ready to catch him if he starts to fall. My doc had to catch me cause I couldn't feel myself falling.

My ataxia appears to have been from gluten since it vanished 1 year post gf diet. I still wobble from time to time but it's probably from gluten cross contamination. It happens a lot if I start eating out.

I suspect that gluten ataxia isn't as rare as they say. Folks in my celiac support group could relate but most didn't know what to call it. Their Doctors just gave them lame excuses for their balance problems.

Dr Hadjivassilou explains ataxia. Tc .. x