Relocated abroad for diagnosis: Help with lab Panel tests

[Fhoggy]

I’ve relocated abroad following over 5 years off unsuccessfully trying to obtain a diagnosis on the NHS at Queens Square.

My symptoms have now have become considerably worse to the point where every day life has become an ordeal.

Following numerous tests in London, and numerous appointment cancellations and very much getting the impression that any diagnosis would be based on a highly subjective personal relationship with the specialist.

It was explained that the tests were to rule out other possibilities. Which were all done. And that the actual diagnosis of MS would depend significantly on the trust between the specialist and the patient, particularly the descriptions of the symptoms. It was sad to note that factors such as clothing, mannerisms, speech and other such factors would play a significant role in diagnosis. This would include perceived socio-economic status.

Eventually I gave up having found the process quite traumatic I had no further intention to put myself through it any further. I did my best to manage my condition through diet, after-market medication and sheer determination to get through the day.

However, I’m now at a point where the symptoms have deteriorated, and so have moved abroad to find a more sympathetic rheumatologist privately. Here I also have direct access to labs and can order the tests directly.

I’d be very grateful if someone could recommend initial tests I should be looking at. Including testing for viruses (Immunology). I understand that tests often need to be repeated when there’s a full blown attack underway.

I’ll be working alongside with well regarded specialists, but I would now like to take a more proactive involvement in the lab work too. I’m now in a fortunate financial position where this is possible and I am seeking out specialists in the country who are significantly easier to work with.

Any advice would be gratefully received.

Edited to add: I was never given the test results until I requested them under the data protection act from Queens Sqaure. I’ve not had the opportunity to go through them as the fatigue & issues with cognition have been severe.

[Ssssue]

Hello

I’m sorry you’ve had such a bad experience at Queens Square.

The problem for us as forum users is that we aren’t (mostly) medically trained, so couldn’t give you a list of tests which might help in your search for a diagnosis.

It sounds as though you are trying to have MS diagnosed as opposed to finding a diagnosis which explains the symptoms you have. This seems to me to be a rather backward way of approaching an exploration of your symptoms. In general, doctors take a medical history, details of symptoms over how ever long you’ve been experiencing them, do a physical examination and order tests. These tests aren’t done to rule in or out specific diseases and disorders, but to find solutions to what ails you.

And are you now seeing a rheumatologist as opposed to a neurologist? With the aim of having MS diagnosed? This doesn’t seem like a sensible way of going about things.

I wish you well in your search for a diagnosis you are happy with, I’m sorry I can’t be of help to you.

Sue

[Cherry_Tree]

Hello. Don’t usually reply to posts, more of a reader in general but your post intrigued me, not least of all because I am also under the care of neurology at Queens Square and have found their care second to none. Far from the diagnosis depending on the trust between patient and consultant, I was always of the impression that a diagnosis of MS is based on a strict criteria, your socio economic status is definitely not part of the Macdonald Criteria. Have you had Mri of brain and spine, lumbar puncture, evoked potential? What were the results? I absolutely don’t want to assume and but can only imagine that if your results were indicative of MS, then you would have a diagnosis or at least would be monitored for future results. Do you believe you have MS? What does your physical exam show. I know when I go, they always do a physical exam, check reflexes, tone, strength and balance etc. I also note that you have gone abroad to see a more sympathetic rheumatologist. MS is a neurological condition and I don’t know how it may work wherever you are now, but MS can only be diagnosed by a neurologist. Sorry to hear your having such a crap experience and feel there is no objectivity in your treatment. I hope you find what you are looking for. If you suspect MS then it will be the standard tests you should have, mri, lumbar and evoked potentials, together with a physical exam which if MS is present will usually present one way or another in that, whether it’s brisk reflexes, poor balance, positive Babinski etc. Good luck.

[Fhoggy]

Thanks for the responses. Over the last five plus years I left the diagnosis to the specialist to speculate on. When it become clear they had no idea, and I enquired further and I was told the a diagnosis of an auto-immune condition is extremely difficult to make, and if often made by ruling out other possible causes.

I’m not pursuing a diagnosis of MS as such, but the GP’s and a few other professionals did suggests as inflammation was a key marker, and auto-immune ‘very highly’ likely I really should be seeing a rhuematologists.

Having spent time on other forums and spoken to many people, including folks at MS support groups (only because they are easy to access) many peoples experience mirrored mine. That the diagnostic process often depended on the ‘click’ between patient and specialist. At least in the UK, and on the NHS. That some folks had an amazing experience whilst others have to go through years of struggle to be taken seriously.

Given that for me this has now gone for over 10 years and I’ve been actively seeking a diagnosis for over 5 years I’m confident it’s either MS or an auto-immune condition that is very similar.

The key issue for me is access to medication which I don’t have, regardless of what it is to try mediate the immune response and medication for extreme flares.

In reality I care little what name is given to the condition, it’s the lack of access to treatment, the ‘we have no idea’, and the repeated cancelled appointments that finally led me to go abroad.

I’ve had an MRI done, and I’m now paying for a T3 MRI. A lumbur puncture was never suggested nor offered.

The physical exam all showed I struggled with balance, poor muscle tone and extreme muscle contractions. Along with deteriotion in eye sight and a list of other symptoms.

I mention that much of diagnosis is based on ruling out other causes but also based on a visual cues. I have friends who work in the medical field (GP, psychiatry, surgeon) and sadly they confirm that all too often this can be the case. Along with a significant number of people who’ve gone through Queens Square with similar stories.

I’m glad that people who’ve posted on here had positive experiences and a diagnosis. And I haven’t ruled out seeing a Neurologist again but I have been advised, by medically trained friends, to pursue an auto-immune diagnosis via rheumatology. And not to be surprised if it turns out to be MS.