Need Help! how to approach doctors for diagnosis

[ahimsa]

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

Oops, I guess I made a mistake. I'm so anxious to help other women avoid bad treatment from doctors that I jumped to the wrong conclusion. It had nothing to do with your writing style.

It's interesting that you mentioned the other person be dressed in such a way that will command respect, I believe 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.

Yes, sadly, it is true that people judge us (not necessarily on a conscious level) based on what we wear.

Good luck finding a doctor and getting some answers.

 

[xrunner]

Arise,


These are just personal thoughts based on my own experience with both NHS and private doctors over the past six years or so since I was diagnosed.
Going back to your main points...

The ME diagnosis is helpful for practical things like disability, insurance etc. and to rule out certain conditions that may generate similar symptoms such as for e.g. celiac or certain autoimmune conditions. Personally, I wouldn't waste my time with GP other than ask him to refer you to an appropriate consultant for a proper assessment. For that, it's easier for you to go places where consultants do not believe CFS is psychological. ME charities etc can help you find one local. The subject of MS is probably better raised with a consultant and asking for tests that may rule out the possibility (I have no idea what the process would entail).

As for getting better, or healing, this is hardest part.
If your diagnosis is going to be ME, the NHS won't be able to help. And there's more bad news I'm afraid.
At present, I do not believe there's a single doctor in the UK good enough to surely help you with that, unless you're very lucky (almost always an oxymoron with ME).
I'm referring to private doctors of course. They are very few, have their own ideas and bias in approaching this illness and a certain inflexibility which I have personally found unhelpful (in those I have personally met).

In terms of tests that may be helpful in understanding what's wrong with your health, again this is my personal view, but if what caused your illness was an infection, and judging from your symptoms list that appears plausible, then that's where the focus should be. Sounds logical, no? Not according to many doctors, would you believe it.
The stool/gut test will probably be helpful for highlighting any yeast or bacterial overgrowth or parasites. If so that's something you can treat.
In addition, because you have been ill for some time you're likely to be overburdened with toxins and getting your system able to rid of those should be a priority.

I'm not a doctor but of all the tests that your doctor might include, personally, I would insist on the following: infections panel (including Lyme western blot), methylation panel, gut/stool test, hair analysis and stool test for toxic metals, nagalase.

Regarding your Vitamin D, I'd ask for a test of both 25-hydroxy-vitamin D and 1,25-dihydroxy-vitamin D. Very few doctors test for both but it can help determine certain possible causes for your low 25-D. I personally wouldn't supplement until that's clarified.

I wouldn't bother with mitochondrial testing, genomic panels and most nutritional profiles. I did all of such and found them not helpful in managing effective treatment, as my illness was also triggered by an infection.
They're usually requested by doctors that aren't able or willing to distinguish between the illness key drivers and secondary effects which are usually endless.
In order to get better you'll need to focus on the first ones whilst avoiding getting sidetracked chasing the others.
This is the hardest part and for this you'll need an exceptional doctor.

All the best

 

[richvank]

Hi, Arise.

You might find it helpful to view the video or slides (to get the slides, click on blue print below the video) at this site:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

Conventional medical tests usually don't reveal much about a case of ME/CFS, because they were not designed to look at the important aspects in the biochemistry of this disorder. They are run for other purposes.

In my opinion, the most important panel you can run in an effort to actually get well is the methylation pathways panel, which is offered only by the European Laboratory of Nutrients in the Netherlands and the Health Diagnostics and Research Institute in New Jersey, USA. This panel requires an order from a physician or a chiropractor. In my opinion, it measures the parameters that are important in the pathophysiology of ME/CFS. It will tell you if the methylation-type treatments are likely to help, and it will give you baseline data for comparison later, if you undertake treatment.

Essentially everyone who has ME/CFS is shown to have the vicious circle mechanism that this panel tests for. Use of this panel has been growing, as has use of the methylation treatments. You can read of others' experiences elsewhere on these forums.

I do want to agree with nanonug that if there are serious gut issues, treatment needs to begin there. In order for the methylation treatments to work, the gut must be able to absorb nutrients and dispose of toxins. A rule of thumb is that if you are able to maintain your weight and are having at least one bowel movement per day, your gut may be working well enough to run the methylation protocol. If not, work needs to start on the gut first.

Best regards,

Rich

 

[rlc]

Hi Arise, Im not against the possibility that you may have ME, what Im saying is that proper medical protocol should be followed and that all diseases that could be causing your symptoms should be ruled out first before it is given as a diagnosis, this is what all diagnostic criteria for it say should be done and for a doctor to give you a diagnosis of it without doing this first would be negligent. There is also the possibility that you have ME and another treatable condition. If adrenal insufficiency or thyroid problems are found and correct treatment cures symptoms then it does rule out ME. MS and Lyme should be ruled out in all patients before a ME diagnosis is given. The Mitochondrial and Gut tests mentioned do not give a diagnosis of ME there are many other conditions that can affect theses tests, there is no one diagnostic tests or set of symptoms that can be used as 100% proof of ME, there are many other diseases that will cause patients to fail any of the tests that are recommended for ME, because of this all the other diseases have to be ruled out or there is the risk of misdiagnosing the patient which could be fatal.

You may have ME I hope not for your sake, as there is no really affective treatment at the moment; I hope that further testing finds a treatable cause of your suffering. Im doubtful of ME being the cause of your suffering because you say that you were able to continue with rather strenuous exercise for a long time after an initial sinus infection. Documented cases of ME from Epidemics going back decades show that ME patients become incapable of exercise without it causing major relapses almost immediately following the start of the illness. Obviously the science in this area has not been completed, but your ability to tolerate exercise for so long and your slow decline in health makes me think that it is quite likely that there is another cause to your health problems; there are many conditions or combination of conditions that would explain your symptoms.

So my advice as it is for all people who suspect that they have ME is to do everything possible to get all other diseases that could cause your symptoms ruled out first. Unfortunately in the UK there is a strong belief amongst a large amount of the medical profession that ME is a psychological illness and once people are diagnosed with ME in the UK it can be very hard to get any further testing. As of the moment you dont have any diagnosis and your doctor doesnt appear to be showing signs of intensively investigating you to find one. I think xrunners advice to get referred to an appropriate consultant would be worth following, as you are likely to get a far higher standard of investigation from them.

Hope you get a treatable diagnosis soon!!

All the best

 

[Googsta]

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.

I know it can be really hard especially when you are talking about upsetting symptoms, but try not to 'look into things' if your doctor smirks or questions you.

There are a multitude of reasons why he may do this, including feeling inadequate to treat such a complex condition. I almost gave up on a doctor for the same reason but my husband encouraged me to persevere, when we went back he'd contacted the ME/CFS society & gotten himself a copy of the ICC. He tried so hard, but admitted to one of my specialists that he found it all too overwhelming.

After that experience I try not to be too sensitive (one of my failings). That's also a good reason to take someone else along, they may see things from a different perspective (plus they remember more, lol).

 

[meandthecat]

Hi Arise I agree that a good diagnosis is important but getting real here most doctors, in the UK, don't believe the disease exists, they have been taught that way and aren't going to change anytime soon. Challenge is only going to make them dig their heels in, so play a smart game.

After a while you will know more about your condition than anyone other than a specialist and most doctors will feel threatened so play dumb but know what you want from the consultation.

Focus on part of the problem, something they can fix and then they will be on your side. Pick up on when they get edgy and ease back. Play child to their parent when adult-adult gets too challenging for them. They may play this game for a living but they can still be played.

I remember the not-knowing of the early days and how that disorientation allowed doctors to project whatever rubbish prejudice upon me that suited them and how long it took for me to wise up.

After they have exhausted all the standard tests they will suggest anti-depressants and CBT, I would advise going along with them but not to get sucked in. Citalopram is the usual starter and is more for their anxiety than yours.

After 7 yrs I am almost out the other side, and am sure that digestive and gut issues were central to my decline as were supplements and methylation to my recovery.

I was diagnosed by exclusion and never had a test conclusive of anything but I didn't find a good doctor, maybe things would have been different if I had.

It's a journey, a quest even, with challenge, sacrifice and heroism. The Holy Grail is health and the re-establishing of our relationship with it, I think we all know what the dragons represent. John Boorman's Excaliber has a scene where the King, who appears to be suffering with ME, rides out with his knights for the final battle against evil; the 'Land' has been subject to it's tyranny, he understands that there is no separation, He is the Land ( there is no spoon) whatever. These themes speak to me on a deep level and have helped as much as the medications

Words cannot describe the horror of this disease but there are ways through it and everyone's experience will be different, maybe you will be lucky. In the early days I had the naive belief that this illness was transformative, that when I recovered I would be 'better' than before. How little I understood, and in the years that followed that belief was overwhelmed by despair. But now whilst not fully restored I am a 'new man', stronger, but 'better'? They say to be careful for what you wish, because you just might get it.

 

[taniaaust1]

After they have exhausted all the standard tests they will suggest anti-depressants and CBT, I would advise going along with them but not to get sucked in. Citalopram is the usual starter and is more for their anxiety than yours.

Id like to warn to go and research anything before trying it by finding out if others who have ME/CFS WHICH IS LIKE YOURS (not all probably have the same thing).. what medications they do better on and which they dont.

Many with ME (not talking about the UK defined kind of ME) dont do well on MANY drugs and some have have their condition worsened due to trialing something.

I personally do terribly on Citalopram (I had to stop it after only a few days, a doctor who didnt believe ME/CFS is real put me on it), SSRIs all seem to be an issue to me and I have havent had a SNRI im okay on either.

This is common for ME people to have issues esp certain kinds of drugs. Ive learnt I can usually tell in advance, how I'll be on a med when I research others who have ME much like my own. (in my own case Dr Cheney's recommendations usually prove to be right). When ive had trialed something I havent researched as far as ME goes and I react to it.. I usually later always find out that its not recommended in us by many ME/CFS world experts.

Thou someone told you that they dont think you have ME as yours come on slower. I'd like to tell you Im sure I have true ME but I could still exercise AT FIRST (thou sick). Maybe some people have bodies capable of fighting this illness some at first but loose the battle more as time goes on? If you were very fit and healthy before getting sick.. maybe that helped.

Be aware that many of us the world over, dont trust the UK diagnostic ME criteria, many people end up being diagnosed with ME which it probably really isnt (ME and CFS isnt necessarily the same thing).

The canadian consensus defination criteria (which is closer to real ME then the UK ME diagnostic criteria) are stricter and dont have so many people falsely getting diagnosed with ME and you may find interesting. eg http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf (has the guidelines for GPs which are used many other parts of the world).

There also is an International ME defination out

.....

True ME does have actual abnormalities which can show but unfortunately doctors dont know to test for them to aid a ME diagnoses, there is also the issue thou with the abnormalies being also unspecific as they appear in other illnesses.

 

[Arise]

Thanks for the informative posts everyone.

I have updated the tests list in my first post after checking through my previous test report.


I think I will ask for the T3 & T4 thyroid test but apparently even these are not completely reliable. Other tests which I will suggest will be celiac, b12, calcium levels and maybe a few others which are commonly tested. I also got a blood test done today which was requested by the doctor, so a lot will depend on the results and tests done. If everything comes back normal then the doc will probably be more willing to carry out further tests. If the tests do not come back all fine then I suspect it may be more difficult to convince him to request other tests.

I will also go ahead with the mito and gut tets at some point in the future. http://http://www.youtube.com/watch?v=2CHook7sJBw&feature=plcp&context=C4e8f89cVDvjVQa1PpcFOBb2_tbGTwfoiLQ4LSB1rvAgvpaljdX_A= @2:40 into the vid seems to fit my thoughts and intuition. I recommed people check this person's vids hes very good. So much of the stuff he says will probably click with you.

Also I agree with Tania about the ME/CFS definition, the two terms have deliberately been muddied up to cause confusion in fact even doctors and other medical professionals are confused. I personally don't like the term "chronic fatigue syndrome" for diagnostic purposes as it would fit better as a symptom or condition a bit like IBS. Its also probably why the NHS uses CFS and has "ME" in brackets.

I'd also be wary of any doctors that suggest depression or even worse tell you that your depressed, these doctors are quite often narrow minded if they can't explain something then depression is their sort of cover to protect their egos.

I will write more posts later, I've got terrible brain fog and mental stamina is poor atm, it actually took me just over an hour to write the post.

 

[rlc]

Hi Arise, as well as getting T3,T4, B12, Cealiac and Calcium also get Thyroid antibody tests to pick up autoimmune thyroid conditions.

Also get Full iron studies, must include transferrin saturation for anaemias and hemochromatosis.

Folate for folate deficiency and other conditions.

Homocysteine for b12 and folate deficiency and Cardiac conditions

ANA (anti nuclear antibodies) for auto immune conditions.

PTH (Parathyroid hormone) and phosphate for parathyroid conditions.

Urine analysis, to see if there is an infection causing your cloudy urine.

Morning cortisol, Aldosterone and ACTH to rule out any kind of adrenal disease.

If you have a possible exposure to infectious diseases like Lyme, HIV and Hep B and C, toxoplasmosis etc they need to be ruled out.

Your vitamin D needs to be retested to make sure that your levels are rising with treatment you may not be taking enough or not be absorbing it, and vitamin D deficiency could be causing a lot of your symptoms.

This is quite a small list of basic tests that your doctor should be willing to do, although they might not want to do them all at once. Hopefully it will come up with some useful information for you.

Your doctor will want to do more basic testing before starting to look at things like MS its standard practice.

The celiac blood test can be unreliable and you need to have been consuming gluten containing food for at least six weeks before doing it, even then some people with it have negative results and have to have an endoscope done.

Before you go to the doctor ask about your familys medical history going back as far as you can and write a list to take to your doctor of any medical conditions that are found in your family, this can help a doctor see if there is a genetic condition you may have.

If you have been oversees or have ever worked or been in a place where you may have been exposed to any kind of toxic exposure e.g. heavy metals, write this down for your doctor, if you have been overseas you may have picked up some illness that the doctor will never look for unless you tell them where you have been.

Write down all your symptoms, how severe they are, rating them from one to ten if you can, and when they affect you and if there is anything that makes them worse.

Write down any medications and supplements you are on.

And write down any tests you would like done.

If you do all this before you go it will make it a lot easier for the doctor to understand what is going on, and will stop you forgetting anything important. If you are taking a support person which can be very helpful, let them see all this information before hand so they can take over from you if you get to sick.
If you feel youre going to need a fair bit of time to discuss everything with your doctor, then make a double appointment.
Hope it all works out well for you!!!

If you can when youre feeling better let us know what your results for TSH and Glucose results were the reference ranges for these are out of date and the diagnosis can be missed because of this.

All the best

 

[roxie60]

Thank you so much for the link!!!! It is encouraging to hear someone discuss the current info on ME/CFS. My sincere thanks to the presenter (is Richvank the same person?). I am halfway thru and now feel I have the next step, determine Glutathione status. Anyone else newto ME/CFS and trying to understand what to do I found this presentation helpful.

Hi, Arise.

You might find it helpful to view the video or slides (to get the slides, click on blue print below the video) at this site:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

Conventional medical tests usually don't reveal much about a case of ME/CFS, because they were not designed to look at the important aspects in the biochemistry of this disorder. They are run for other purposes.

In my opinion, the most important panel you can run in an effort to actually get well is the methylation pathways panel, which is offered only by the European Laboratory of Nutrients in the Netherlands and the Health Diagnostics and Research Institute in New Jersey, USA. This panel requires an order from a physician or a chiropractor. In my opinion, it measures the parameters that are important in the pathophysiology of ME/CFS. It will tell you if the methylation-type treatments are likely to help, and it will give you baseline data for comparison later, if you undertake treatment.

Essentially everyone who has ME/CFS is shown to have the vicious circle mechanism that this panel tests for. Use of this panel has been growing, as has use of the methylation treatments. You can read of others' experiences elsewhere on these forums.

I do want to agree with nanonug that if there are serious gut issues, treatment needs to begin there. In order for the methylation treatments to work, the gut must be able to absorb nutrients and dispose of toxins. A rule of thumb is that if you are able to maintain your weight and are having at least one bowel movement per day, your gut may be working well enough to run the methylation protocol. If not, work needs to start on the gut first.

Best regards,

Rich

 

[roxie60]

ahimsa - thankyou for your sig - that is the first timein a longtime I have laughed until tears!!!!!! thanks. Does that mean i haveE/CFS cause I get that humor ;-)

 

[taniaaust1]

To other original poster.

My CFS specialist said he finds abnormal iron study results in many of his CFS patients... so I had a full iron study done and found out I had low iron storage (to the point I could be classified with anemia). This was interesting to find seeing I actually have good iron level.. but with no iron storage.

So I second a full iron study (not the common iron test) may be something you may want to get done to see if any thing shows up there.

A rule of thumb is that if you are able to maintain your weight and are having at least one bowel movement per day, your gut may be working well enough to run the methylation protocol. If not, work needs to start on the gut first.

Best regards,

Rich

Rich I just saw this post of yours. Does this mean that if you only have a bowel motion every few days or less, that if one got a methylation panel done, it would be wrong?

 

[richvank]

Hi, tania.

No, the methylation panel will tell you the status of your methylation cycle, folates, and glutathione regardless of how your gut is doing.

However, in order to treat to lift a partial methylation cycle block, your gut has to be working well enough to be able to excrete the toxins that will be mobilized by the methylation protocol. If it isn't, the toxins will be reabsorbed from the gut back to the liver, and you will not be able to get rid of them.

Best regards,

Rich

 

[Arise]

Just went to see my doc again, all the blood tests came back normal they were the same ones carried out before and now my vitamin D level is good at 65 nmol/L.

I asked about the thyroid tests and he said the TSH is the most reliable test and I also asked if would be possible to carry out other additional blood tests? which he said "it is not within my power". Well no suprises there, guess I will have to fork out the money myself with private testing. But one good thing that happened was he reffered me to a specialist (neurologist) at the hospital.

 

[nanonug]

Just went to see my doc again, all the blood tests came back normal

I am going to reiterate my original advice: focus on the gut!

 

[rlc]

Hi Arise, sounds like your doctor is giving you the run around, because unless things have changed recently it is well within the power of the average GP to test for the likes of T4, this should be done so central Hypothyroidism (pituitary) isnt missed. Do you have your current reading for TSH? Good that your being referred to a neurologist they should be able to investigate a lot of things, if you explain that you dont think that your GP has tested everything that they should, hospitalist specialist are often very happy to do these kinds of tests, and then you wont have to pay for them privately. At 65nmol/L you are still vitamin D insufficient, levels below 75nmol/L are consider to be insufficient even under the old research, new research recommends levels a lot higher. So there is still a way to go to get that properly treated.

Best of luck with the neurologist!!!

All the best