prove tests

[skisko]

Hello
I believe that I have CFS/ME.
About 5 years I suffer from a lot of medical conditions, starting with IBS and lactose intolerance that I believe was the trigger, and recently I realised that everything are only symptoms to one problem.

currently I within a problematic framework (conscription) and I don't have all the time to prove that I have CFS.

My primary symptoms are:
Fatigue
Weakness, Muscle weakness
Headaches
Sleep disturbance(unrefreshing sleep, difficulty falling asleep, frequent awakenings)
Irritable bowel syndrome
Lactose Intolerance
Weight loss
Swollen lymph nodes
New allergies-spring allergies and allergic rhinitis

but the most annoying is the brain fog. I have exactly the cognitive symptoms that are typical to cfs and they are worse than they sound. short and long term memory is effected and I barely can function.

I know that there is no test that can prove CFS,
but what test can I take to prove that I have something? like
brain function abnormalities?

*sorry about spelling mistakes

 

[taniaaust1]

I recently as part of a study had a neuropsychologist test me on my brain stuff... the results were so shocking I think he was shocked too, the test showed me getting worst and worst instead of better and better with memory repeat verbal words eg he slowly read a list of words and then one has to remember back what he said. I got down to only being able to remember two words out of 50 (a normal person the more they hear the same thing would improve the memory of it.. my brain just fatigued so I got worst).

Thing is with some of these tests I was normal (the first testing day the week before, all the other tests were normal I think) but with others on this other day, I was terrible ....................so the neuropsychologist would have to test on range of areas. But due to my own results I suggest to see a neuropsychologist for some testing.
..............

If you have CFS and need to prove there is something wrong with you. You could try testing yourself for orthostatic issues as most of us have them or do end up with these, whether you have any of these yet, its hard to tell by what you said eg Postural orthostatic tachycardia syndrome POTS or other forms of ME/CFS dysautonomia. Then if you find something abnormal get your doctor to test. At least those things cant be denied if they are there and tested for.

 

[Valentijn]

I know that there is no test that can prove CFS, but what test can I take to prove that I have something?

A single maximal effort Cardio-Pulmonary Exercise Test (CPET) can be used to document disability. This works just as well for ME/CFS patients as for patients with heart or lung diseases.

For mildly affected ME patients, a 2-day CPET might be necessary. So far, the research shows that only ME patients do worse on the 2nd day. So that is a pretty good indicator that the poor performance is due to a specific disease process, rather than deconditioning or a different disease.

 

[justy]

I agree with Valentjin, and might add that Dr Myhill's mitochondrial profile test (available internationally) will show that you are ill - however it does not appear to be specific entirely to M.E/CFS. I had the test done and it was very useful for convincing people that I was Really ill.

 

[A.B.]

Read the following to get a better idea whether you might have it:
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf

Also make sure that all well known conditions have been excluded. In case you have it, justy and Valentijn have given good advice on how to prove that you realy are sick.

 

[SOC]

Hello
I believe that I have CFS/ME.
About 5 years I suffer from a lot of medical conditions, starting with IBS and lactose intolerance that I believe was the trigger, and recently I realised that everything are only symptoms to one problem.

currently I within a problematic framework (conscription) and I don't have all the time to prove that I have CFS.

My primary symptoms are:
Fatigue
Weakness, Muscle weakness
Headaches
Sleep disturbance(unrefreshing sleep, difficulty falling asleep, frequent awakenings)
Irritable bowel syndrome
Lactose Intolerance
Weight loss
Swollen lymph nodes
New allergies-spring allergies and allergic rhinitis

but the most annoying is the brain fog. I have exactly the cognitive symptoms that are typical to cfs and they are worse than they sound. short and long term memory is effected and I barely can function.

I know that there is no test that can prove CFS,
but what test can I take to prove that I have something? like
brain function abnormalities?

*sorry about spelling mistakes

This sounds a lot like some serious allergies. Brain fog can exist in the context of major allergies. If I were in your situation, I'd want to be very thoroughly tested for allergies before I accepted an ME/CFS diagnosis.

 

[barbc56]

@skisko

You might want to check if Myhill's test is recognized as valid by the medical community, if you plan to use it for disability.

Good luck and welcome to Phoenix Rising!

Barb

 

[skisko]

thank you all for the help
I will ask for CPET.
the allergies are not serious, and appear mostly when the sping starts.

can tests like brain MRI can prove something?

 

[WillowJ]

can tests like brain MRI can prove something?

some ME patients do have brain abnormalities which show on MRI. However, these are not specific, and neither radiologists nor neurologists are trained to recognize them.

These tend to be very small lesions. Because healthy people get these as they age, and they could also come from diseases such as migraine, some radiologists will not notice them (even if the patient is young and shouldn't have them, or has too many).

You can read about some various tests in the International and Canadian criteria, and in the primers based from them (International, Canadian).

There are also some new things being discussed at the conferences in San Francisco, for instance, which might be available in the future.
http://phoenixrising.me/archives/24936 small PET study on subtle inflammation
http://phoenixrising.me/archives/24695 Leptin
http://phoenixrising.me/archives/24553 Day Four
http://phoenixrising.me/archives/24522 Day Three
http://phoenixrising.me/archives/24452 Day Two
http://phoenixrising.me/archives/24390 IACFS/ME Day One
http://phoenixrising.me/archives/24323 Stanford Conference