Need Help! how to approach doctors for diagnosis

Hello I am new here, I need some help regarding potential tests that I should get done and diagnosis when I go see my doctor.

I am about 98% confident that I have ME/CFS.

Prior to the illness I was reasonably fit and healthy although not perfect, my diet was pretty good and academically I was average but ok.

I think it started around late 2009, I came down with what seemed like a sinus infection whilst I was at University. After this infection my mental stamina and cognitive abilities diminished greatly, I could no longer read for long periods grasp complex subjects and theories and had permanent brain fog. Physically I was not too bad at this point, I was still excercising 3 times a week (although prior to this it was 5 to 6 times a week), which included running and body weight excercises but in the summer of 2010 I got a part time job and was working and excercising fine until I decided I needed a break from excercise as I felt tired. Anyway as I got back into running again after a months break, I found that I simply could not train at the same intensity as before nor could I run more than 3 miles anymore, it was impossible to increase my stamina and I had given up body weight excercises e.g. pushups, situps etc. I eventually decided to give up excercise as it was making me feel worse, also during this time my mental stamina suffered further.

From my limited knowledge of CFS/ME, my situation seems to match that of many ME/CFS patients and also those with adrenal fatigue.

In mid 2011 I got some blood tests done, these included the following off the top of my head:

red/white blood/patelete cell count
Haematocrit-MCV, MCH, MCHC
Neutrophil, lmyphocyte, monocyte, eosinophil, basolphil cell counts
blood sugar level
Urea and electrolytes- Sodium, potassium, urea, creatinine levels
Liver funtion test-serum alkaline, phosphate, ALT/SGPT, gamma glutamyl transferase, albumin, biliburin
GFR
Thyroid function test-TSH level
cholesterol level
vitamin D
ESR
Haemoglobin A1C (IFCC standardised)+(DCCT aligned)
PLasma C reactive protein

Only vitamin D came back as abnormally low, everthing else was fine. So since then I have been taking vitamin D3 from sunvite. with virtually no improvement in fact Im worse.

So today I went to see my doctor again and gave him the following list of symptoms I was suffering from:

Cognitive dysfunction
Brain Fog
Difficulty concentrating
Brain firing
Constant flu like malaise
Disturbed sleep patterns
Unrefreshing sleep
Muscle ache/pain especially legs after walking or standing long time
Cold fingers and feet
Post exertion malaise
Poor/slow recovery after exertion both mental and physical
Irritable bowel syndrome symptoms usually diarrhoea and steatorrhea
Chronic sinus
Swollen lymph glands
Recurring infections sore throat mainly
Sweating including night sweats
Less stamina both physical and mental
Cloudy urine occasionally
Dizziness
Increased sensitivity to heat and cold

I also told him "I think I have ME or MS". After reading the list he said "I dont think you have ME or MS" and told me that some of the symptoms that I listed were vague, which was not very helpful. He also asked me why do you think you have MS/ME?

I said because of the symptoms I listed, which I have had for 3 years and from the blood tests only coming back with vitamin D defficiency. I probably should have stated the symptoms in a bit more detail though.

The doctor then told me to get some blood tests done (presumably the same ones), which I will get done on wednesday.

So what I need help on are the kind of tests that I could pressure my GP to carry out that will help me find out whats wrong with me other than the ones I have been tested for. I am thinking of sugesting a "tilts table test" and "blood analysis for candida".

And also would it be wise to ask my GP to refer me to some kind of specialist, such as a neurologist to check for brain lesions.

Just to note I am situated in the UK.

Sorry for the boring post

Thanks

Arise said:

Irritable bowel syndrome symptoms usually diarrhoea and steatorrhea

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Say no more: focus on the gut!

If you are able to, start with a test such as Metametrix GI Effects Complete Profile. This will tell you a great deal about your gut function and status, including infections with several different kinds of bacteria and parasites.

I've found neurotransmitter results (catecholamines and amino acids) to be very useful, as well as organic acids results. You could also get tested for active herpes viruses.

Since you are in the UK, I'd advise against seeking an ME or CFS diagnosis. You want to get treatment for your symptoms. My best suggestion is to focus on symptoms the doctor can see (swollen lymph nodes, sore throat) and ones s/he will accept and attempt to treat (GI and sleep issues). If ME/CFS comes up, you are more than likely to get shunted off to a psychiatrist. Also, most doctors are taught that if a patient presents with more than 3 symptoms, s/he's a hypochondriac (or whatever their current trick phrase is), which will limit your symptomatic treatment.

Maybe our UK friends can chime in on what symptoms they've been able to get treatment for from their GPs.

How familiar your list of symptoms Arise. And I agree with all that's been said previously. So difficult here in the UK - my Docs only eventually accepted ME. and my GP did go along with some symptoms - Thyroxine for thyroid (measured), Gabapentin for pain only she thought (in the event I upped to full epilepsy dosage and actually slept restoratively at last), and Osteoporosis treatment for that also diagnosed. But you may find Docs more with it these days. My Neurologist's MRI scan showed "high spots" ruled out MS and Parkinsons but didn't take anything further (he actually apologised). Hoping other members will chime in with advice on tests available who/where etc. and much agree focus on the gut in the meantime and advice on supplements etc I certainly find here. Sorry not to be much use.

nanonug said:

Say no more: focus on the gut!

If you are able to, start with a test such as Metametrix GI Effects Complete Profile. This will tell you a great deal about your gut function and status, including infections with several different kinds of bacteria and parasites.

Click to expand...

I have also been thinking of doing some private tests such as Sarah Myhill's mitochondrial function test, but I wonder what help I would get from the GP if I show him the results. It would be good to know other peoples experience with doctors reaction to such tests. As many doctors dont pay attention to things such as candida or ME/CFS.

Im hoping to get as many tests available that relate to my symptoms through the NHS. Then get many of the private tests done such as the the gut profile and mitochondrial function tests.

SOC said:

Also, most doctors are taught that if a patient presents with more than 3 symptoms, s/he's a hypochondriac (or whatever their current trick phrase is), which will limit your symptomatic treatment.

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Not suprised by this, whilst good doctors are out there most are not helpful out all especially with illness such as ME, which makes it even tougher on us folks.

Arise said:

Im hoping to get as many tests available that relate to my symptoms through the NHS.

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In that case, specifically ask to get tested for (gastroenterologist): Small Intestinal Bacterial Overgrowth, Helicobacter pylori infection, Giardia Intestinalis infection. And maybe your family doctor (not sure): MTHFR mutations. However, prepare to be disappointed with the "system".

Arise said:

Then get many of the private tests done such as the the gut profile and mitochondrial function tests.

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Given your gut symptoms, the mitochondrial function tests are probably a waste a money.

Hi, from my experience i have recieved NO testing other than the basics you have listed from the GP - refered to an endocrinologist after 17 years of being ill - they did a test for addisons then shunted me off again. I have an M.E diagnosis finally after doing the mito test with Dr Myhill over a year ago. No help whatsoever from the NHS after the test - NONE. But it was still very worthwhile, as have her treatments/supplements.

I wouldnt expect anything from the NHS. Despite severe cognitive problems and needing a wheelchair at times i have still not got any testing or treatment beyond the ususal counselling or antidepressants - and my GPs quite nice.
If your D is low they should offer you injections.
If you want to discuss Dr M further please do PM me.
Take care, Justy

PS i have gut symptoms too and the ito test is still very useful.

Maybe our UK friends could comment how doctors deal with sinus issues as that needs to be addressed.

I agree with seeing a Neurologist but I would document your symptoms for a while first.
Note any numbness, tingling, burning. Avoid terms like brain fog & use descriptions such as difficulty concentrating etc

I agree with previous comments, keep your list to jog your memory but don't give your doctor a list of symptoms. I know this from previous experience.

I'm a bit nervous to ask this, Does the UK M.E society have a database of sympathetic doctors?:innocent1:

justy said:

Hi, from my experience i have recieved NO testing other than the basics you have listed from the GP - refered to an endocrinologist after 17 years of being ill - they did a test for addisons then shunted me off again. I have an M.E diagnosis finally after doing the mito test with Dr Myhill over a year ago. No help whatsoever from the NHS after the test - NONE. But it was still very worthwhile, as have her treatments/supplements.

I wouldnt expect anything from the NHS. Despite severe cognitive problems and needing a wheelchair at times i have still not got any testing or treatment beyond the ususal counselling or antidepressants - and my GPs quite nice.
If your D is low they should offer you injections.
If you want to discuss Dr M further please do PM me.
Take care, Justy

PS i have gut symptoms too and the ito test is still very useful.

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I am sorry to here that Justy, its a terrible way to treat a patient seeking help. Thanks for the help anyway.

nanonug said:

In that case, specifically ask to get tested for (gastroenterologist): Small Intestinal Bacterial Overgrowth, Helicobacter pylori infection, Giardia Intestinalis infection. And maybe your family doctor (not sure): MTHFR mutations. However, prepare to be disappointed with the "system".

I doubt that they test for the things you mentioned on the NHS but perhaps a test for coeliac/celiac might be possible.

Given your gut symptoms, the mitochondrial function tests are probably a waste a money.

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Well my gut is usually fine most of the time but ocasionally I will get the symptoms mentioned, which I think may be related to food intolerances. I still think the mito test would be useful as it would explain post exertional malaise and the poor recovery afterwards.

Googsta said:

Maybe our UK friends could comment how doctors deal with sinus issues as that needs to be addressed.

I agree with seeing a Neurologist but I would document your symptoms for a while first.
Note any numbness, tingling, burning. Avoid terms like brain fog & use descriptions such as difficulty concentrating etc

I agree with previous comments, keep your list to jog your memory but don't give your doctor a list of symptoms. I know this from previous experience.

I'm a bit nervous to ask this, Does the UK M.E society have a database of sympathetic doctors?:innocent1:

Click to expand...

Yes i agree with you on avoiding terms such as brain fog and even cognitive dysfunction, firstly many doctors will not be clear on what you mean and also my doctor told me that the term "cognitive dysfunction" is used for people that are mad or disturbed, so thats a no no.

Arise said:

Well my gut is usually fine most of the time but ocasionally I will get the symptoms mentioned, which I think may be related to food intolerances.

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The most probable causes of steatorrhea are either achlorhydria or deconjugation of bile salts. The former is caused by Helicobacter pylori. The latter by certain parasites or bacterial overgrowth in the small intestine.

Note that when I recommended you to focus your attention on your gut, I was speaking from personal experience. There is a very good chance, I'd say between 75 and 100%, that fixing whatever is causing the gut problems will fix everything else! I know this appears hard to believe at first but one needs to remember that something like 80% of people's immune system "resides" in the gut. Have a look at this article: "The intestine as a sensory organ: neural, endocrine, and immune responses".

I disagree with whoever said "don't try to get a diagnosis of ME" - you need an accurate diagnosis, and you need it on your file. The difficult part is not so much the tests, it's finding a doctor who knows how to handle ME. This either means a specialist, and on the NHS that means a) finding a good local specialist (my local one was horrific, don't know if he's still around) and b) persuading your GP to refer you there in the first place. So even if it's not your GP who makes the diagnosis, you still need a good GP. Chances are that even if you get diagnosed by a specialist, most of your regular care will be covered by your GP.

Contact the various ME organisations, and find if there are any branches of local ME support groups. Ask around for GP recommendations. If you can't find any through those, try local mental health advocacy groups and see if they can recommend anyone. Doctors who deal well with patients with mental health problems are often also good at dealing well with patients with ME, it tends to require the same skill set.

Take a trusted friend or relative with you to the appointment if you can, and if you have one that truly believes you. It's useful for emotional support, in case you forget anything important, and to back you up if the doctor isn't believing you.

Avoid emotive language or technological terms. Don't say that you're "in agony", describe pain in terms of things like "it's waking me up in the middle of the night" or "I can't lift anything heavier than a loaf of bread without being in pain for the next hour" (or whatever applies to you). Don't say "cognitive dysfunction", doctors dislike it when patients use what they term "jargon".

Be aware that there is still a strong tendency in the UK for some doctors to write off ME patients as psychiatric (which is no way to approach psychiatric patients either, come to that), and get yourself out of there if they start trying to treat you that way. Also be cautious if they try to push CBT or graded exercise.

There are good doctors out there. I have an absolutely wonderful GP (I'm in Scotland), so does a friend of mine with ME in Devon. A good doctor will believe you, treat you with respect, accept that you know a lot about your illness, look at your overall symptom profile, give you sensible advice about pacing, look at the areas where it's worth trying you on different meds (and many symptoms are potentially treatable, though it's never easy), and refer you to individual specialists where required. Having a good GP has made a massive difference to my quality of life.

Hi Arise, if these are the only blood tests you have had done then you have not been investigated properly to rule out other conditions that could be causing your symptoms! There are many other tests that should be done, for example there are no tests for adrenal insufficiency, Celiac, lupus or B12 on the list of tests you say you have had, if you are not 100% sure of all the tests you have had done then ask your doctor to give you copies of all your tests, it is very important to do this so you can see what has not been done.

People are only supposed to get an ME diagnosis after all other possibilities and there are lots of them have been properly ruled out, you do not appear to have had this done. I would advise against pushing your doctor for an ME diagnosis until all other possibilities have been ruled out, doctors especially in the UK tend to view ME is a psychiatric diagnosis and once patients are given an ME diagnosis it can become very hard for them to get further testing to rule out other conditions.

The rates of patients who are wrongly given ME diagnoses due to failing to properly rule out other diseases are truly disturbing. Two doctors who specialise in finding the correct diagnosis in patients wrongly given an ME diagnosis are Doctors Byron Hyde and Shirwan a Mirza, I have written out the testing that they recommend and links to articles explaining their methods in post #5 here http://forums.phoenixrising.me/show...s-How-to-rule-out-all-other-possible-Diseases if you want information on more tests that should be done, and on the fact that reference ranges for things like TSH (thyroid) have been shown to be wrong leading to a lot of people being misdiagnosed.

I would advise against trying to get your doctor to do some of the more alternative types of tests, until you have had tests like the ones outlined by Drs Mirza and Hyde done, they are the most likely to find any missed diseases, and your doctor is likely to think youre a bit nuts if you start pushing for the more alternative tests straight away.

RE your vitamin D levels have you had this retested to see if they are now high enough? You may not have been taking enough to solve the problem, if you are still deficient it may be still be causing a lot of your symptoms and will make it very hard for your doctor to work out what is going on, they can treat it with large doses and cure it very quickly for you, but ask them to check calcium and PTH (parathyroid hormone) first as this will show if you have any diseases that you should not take large amounts of Vitamin D with. I have put a large amount of information on Vitamin D at post # 56b here http://forums.phoenixrising.me/show...-treat-national-health-shame-and-CFS-ME/page6 if you are interested.

The most important thing is to get all other possible diseases that could be causing your symptoms ruled out first, you dont want to suffer needlessly with being wrongly diagnosed with ME, it doesnt look like this has been done so there is a high chance that you do have a treatable illness that hasnt been diagnosed yet!

On this page and the links at the bottom of the page there is some very useful information on how to get the best results out of your doctors visits http://www.rightdiagnosis.com/diagnosis/steps-doctors-visit.htm

All the best

Hi rlc, I do have a copy of the tests and I realise that they are not sufficient enough to rule out other causes, however in my view having adrenal deficiency or thyroid abnormality does not rule out ME either. I think it's a ridiculous way of diagnosing ME when you have other tests such as the mito and gut tests, although I do agree that people should be tested properly for the things you mentioned.

Perhaps you are right about being against an ME diagnosis, however my symptoms are quite debilitating which concerns me. I also deliberately mentioned MS to my doctor just in case he did not believe that ME was real, but I think getting checked for MS is a must and then of course there is lyme disease but I hear the antibody tests are not reliable.

I agree with Calathea's suggestions, especially the one saying you should take someone with you to your appointment(s).

To add one additional point, I recommend that the person be male, if possible, and dressed in something that will command respect (e.g., suit jacket or blazer, not blue jeans). We're not yet living in a "post-sexist" world. Doctors treat men differently from women. I found out very quickly that taking my husband along with me made the doctors treat me a lot better. And my husband was the one who was smart enough to realize that dressing in a suit was the way to go. It's sad that these little things are still important in our society but it's a fact of life.

After you have established some sort of rapport or relationship with your doctor (let's hope you find one that you like!) then these things are not as important. But they are very important during the initial diagnosis phase.

Arise said:

In mid 2011 I got some blood tests done, these included the following off the top of my head:

red/white blood cell count
blood sugar level
Urea and electrolytes
Liver funtion test
Thyroid function test
cholesterol level
vitamin D
ESR

Click to expand...

Thyriod tests should be a must do test for ruling out thyriod issues, it can cause so many of the symptoms of ME/CFS.

Only vitamin D came back as abnormally low, everthing else was fine. So since then I have been taking vitamin D3 from sunvite. with virtually no improvement in fact Im worse.

Click to expand...

Very common for ME/CFS people to find they have D deficiency.. some with ME/CFS do seem to get worst with D supplements to.

So today I went to see my doctor again and gave him the following list of symptoms I was suffering from:

Cognitive dysfunction
Brain Fog
Difficulty concentrating
Brain firing
Constant flu like malaise
Disturbed sleep patterns
Unrefreshing sleep
Muscle ache/pain especially legs after walking or standing long time
Cold fingers and feet
Post exertion malaise
Poor/slow recovery after exertion both mental and physical
Irritable bowel syndrome symptoms usually diarrhoea and steatorrhea
Chronic sinus
Swollen lymph glands
Recurring infections sore throat mainly
Sweating including night sweats
Less stamina both physical and mental
Cloudy urine occasionally
Dizziness
Increased sensitivity to heat and cold

Click to expand...

England is probably the only place Id suggest to think a lot before going in with a big list.. Cloudy urine.. I hope your doctor ruled out you getting urine infections.

That group of symptoms (symptom complex) you have there, sound extremely likely to be ME/CFS, I strongly suspect you have this illness. (they dont sound MS to me).

I also told him "I think I have ME or MS". After reading the list he said "I dont think you have ME or MS" and told me that some of the symptoms that I listed were vague, which was not very helpful. He also asked me why do you think you have MS/ME?

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His response is quite worrrying. He either knows nothing at all about ME as you so fit it.... or he thinks ME is a psych illnesses and he thought you seemed to rational, liked you or whatever it was.. so said you didnt fit it. I'd be tempted to be immediately looking for another GP.. his response has already shown he probably isnt going to be a good doctor for you.

A good response wouldnt have been "I dont think you have ME" when you are such a good match. (dont think you can educate a doctor about ME/CFS as most will not be educated.. it usually takes a good ME/CFS specialist behind you to educate them).

I probably should have stated the symptoms in a bit more detail though.

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It wasnt you I dont think, its the doctor. If you went on more about them, he probably would of started thinking you were a hyperchondriac... young, female.. and that is what many doctors esp male ones will think.

So what I need help on are the kind of tests that I could pressure my GP to carry out that will help me find out whats wrong with me other than the ones I have been testd for. I am thinking of sugesting a "tilts table test" and "blood analysis for candida".

Click to expand...

I strongly suggest to not go in there with a heap of tests asking him to do esp since he's always obvioiusly not going to be good for you. Maybe just enquire him about one or two other tests.. common usual ones he will know, (dont start with tilt table test at this point as most doctors will not know what it is or candida.. stick with things he knows).
eg thyriod test.. you can say a friend wondered if that was wrong with you or something.

You will need to find a more open and alternative doctor for many of the other things.. or contact a doctor who specialises in the area you want to find out about.

Another way you can broach a doctor to help ME/CFS symptoms is to focus entirely on a symptom rather then bringing up ME/CFS eg .. Im having a lot of trouble sleeping and cant get to sleep till 3am and its causing me issues (or whatever your story is). eg try to get your insomina helped or the IBS eg Im having trouble with diarrhea a lot. Even a bad ME/CFS doctor may be able to help you with certain ME/CFS symptoms, he dont need to know that its ME/CFS causing them.

The above approach may work better with the doctor you are seeing now and get more sorted out then what you may with that one otherwise.

And also would it be wise to ask my GP to refer me to some kind of specialist, such as a neurologist to check for brain lesions.

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I'd leave it up to him... I personally doubt anything would be found there by your symptom complex you have so probably more better just to leave it up to him.

I do think you should try to get in with Dr Sarah Myhill for a offical diagnoses (she's the only good ME/CFS I know of in the UK so only one I could suggest). You just dont know if you could end up needing to go onto disability in which case you would need one.

Based on your symptoms, I suggest the Sarah myhill mitochrondrial tests (your issues with exercise sound mito issues) and also maybe some more tests in the gastro area. A tilt table test should certainly be done at some point to try to work out what is causing your dizziness.

best luck..

Also be aware that IBS can be helped by certain things which you dont need a doctor for.. if you want to know more just start at threat on how to help it.

When seeking out a new doctor.. I also suggest taking a male friend with you or your mother or someone to back up you are having some big issues.

If foods are affecting you (they can affect in many ways, make IBS worst, make fatigue worst etc)... it will be helpful working out any you have issues with. (often doctors arent good in helping one work that out).

Arise said:

Sorry for the boring post

Thanks

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Hi,
your post is not boring...Hopefully you'll find some advice that will help with your particular circumstances
May I ask a couple of questions.
Did you receive any treatment for the infection that triggered your illness?
Are you looking for doctors/tests that to help you obtain a CFS/MS diagnosis or doctors/tests to help you get better?

ahimsa said:

I agree with Calathea's suggestions, especially the one saying you should take someone with you to your appointment(s).

To add one additional point, I recommend that the person be male, if possible, and dressed in something that will command respect (e.g., suit jacket or blazer, not blue jeans). We're not yet living in a "post-sexist" world. Doctors treat men differently from women. I found out very quickly that taking my husband along with me made the doctors treat me a lot better. And my husband was the one who was smart enough to realize that dressing in a suit was the way to go. It's sad that these little things are still important in our society but it's a fact of life.

After you have established some sort of rapport or relationship with your doctor (let's hope you find one that you like!) then these things are not as important. But they are very important during the initial diagnosis phase.

Click to expand...

I see your point but I dont think I need to worry about sexism from doctors, my style of writing must be soft and dainty

Its interesting that you mentioned the other person be dressed in such a way that will command respect, I beleive this is important because when I was talking to my doctor about ME and MS he had a slight smirk on his face, the moment I noticed this I thought damn! this guy is not going to take me seriously.

xrunner said:

Hi,
your post is not boring...Hopefully you'll find some advice that will help with your particular circumstances
May I ask a couple of questions.
Did you receive any treatment for the infection that triggered your illness?
Are you looking for doctors/tests that to help you obtain a CFS/MS diagnosis or doctors/tests to help you get better?

Click to expand...

The answer to your first question is no. At the time I did not know that it would lead to my current situation and did not expect much help anway.

With regards to the second question, I ultimately just want tests so that I can get better, but it's a difficult situation on getting an ME/MS diagnosis. The short answer would be that "yes if it's benificial for me" but that leads on to other questions. Such as what addtional help can I get with an ME diagnosis? also would it help in the future with disibility claims?