Can anyone point me onto any write ups or videos connecting MS (Multiple Sclerosis,) with Thyroids please or connecting also with FM, CFS and ME.
I have looked on the Thyroid UK site and have only found Fibromyalgia, Cronic Fatigue Syndrome and ME mentioned all together, I have read many times that that MS has a similar connection and often MS patients gets misdiagnosed.
Desperately need this info as a friend's relative in her 20's has similar symptoms of all three FM, CFS and ME and even Hospital Doctors can't work out what's wrong with her and are saying it could be MS, doesn't sound as though she is getting much treatment. (Her family are desperately worried.) She is in a wheelchair now due to the condition and is very poorly, my friend has told me that if she has another relapse it might leave her with a permanent disability, (think this was connecting to her muscles.)
Any help welcomed,
Thank you.
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Coastwalker
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Can you give any more detail regarding her symptoms. the reason I mention this, is that a percentage of patients with MS get the wrong diagnosis and actually indeed have a condition called Hughes Syndrome, the symptoms are similar and also often lesions on the spine and in other places look similar. People with Hughes Syndrome/Antiphopholipid Syndrome often have Thyroid issues and Sjogrens alongside and in some cases Lupus. dailymail.co.uk/health/arti...
I work as an administrator on the forum supporting these patients, and have this disorder myself, please press reply or write to me if any of the symptoms fit, markers are extreme migraines, funny turns, history of miscarriages sometimes in a whole family etc. MaryF
Hello there, I can sympathize with your friend and family. I recommend that you contact a chap called Phillip Day, he is on the web at Credence.org, he is also available to talk to by phone completely free of charge four mornings a week. He has helped me greatly. P.S. he also founded "The Campaign for truth in medicine".
Hi jammidodger3, I have had a look at Phillip Day's website Credence, but couldn't find an MS connection, can you point me to it please, or tell me about it, I will now take a look at 'The Campaign for truth in medicine.' Philip founded. Many Thanks.
She should be FULLY tested for a collection of autoimmune conditions. Not just the basic tests - she needs antibody checks alongside the basic ones.
Thyroid, Pernicious Anaemia, Hughes Syndrome, Crohn's Disease, Lupas would be a start.
All these are often misdiagnosed as CFS, ME, FM. MS is also frequently misdiagnosed when the sufferer really has B12 deficiency. I'm quite opinionated about this which can upset many but I truly believe these are an umbrella term for a collection of symptoms used too often as an excuse by the medical profession to relieve them of the responsibility for finding the real cause.
It breaks my heart to think of the people worldwide suffering from undiagnosed and untreated autoimmune conditions because they have been labelled with these.
Agree. And just to add to that the antibody tests for PA can give false negatives, so ideally you need to look at a range of test results - FBC, serum B12, anti-intrinsic factor, anti-parietal cells, active B12 (holoTC), methylmalonic acid (MMA) and homocysteine. Doctors don't tend to believe that young people get PA so they dismiss it. Also you can have normal serum levels and a normal FBC and still be suffering severe neuro damage. Some links:
Thank you too hampster1, I have had a look at your links (I have been a frequent visitor of the B12 deficiency website myself, but I never remember it all ) Will note your input down too. Thanks again. .
Hi Mary. I'm well thank you. Hope all is good with you too? I only saw your post after I had finished mine - I lost the first one so it took me a while to re-do it!
Thank you editfmrt, I will note it all down to pass onto my friend, I thought they were all connected, I remember seeing that 'you tube' piece on Doctor Chandy and B12 deficiency, it was one of the first things that came to mind when my friend told me about her young relative. Yes it is so terrible that so many have been suffering unnecessary for far too long.
Yes that Dr Chandy video brings it home doesn't it? It's good if you can pass the information on to the family. The thing that always worries me is that when people are in these situations, they trust the medical profession to do the right thing - think of it in the first place, run the right tests, interprete them properly and then give the right treatment. If you haven't experienced the failings before, people just think they don't need to push and worry about telling the doctors how to do their jobs. Hope it all goes well for them. She needs urgent investigations.
Yes Dr Chandy is a brilliant Doctor who listens to his patients, but yet himself not listened to.
Yes it is very difficult persuading unaware people that all is not what it seems out there and telling them that often many Medics have no idea how to get some of us Thyroid patients well again. Most oddly it is yourself who has to persuade your Doctors how best to treat 'you'.???????? if not you might not get well.
Before all my thyroid symptoms and being on here, HU and TUK, I use to rely and put almost my whole trust in Doctors knowing how to make me well again, but now after several family situations concerning medics that have either no idea, so either make it up or won't even try testing, I now realize I have to have gen up on knowledge myself before any appointments and write a list so nothing is missed or overlooked.
When I get a quiet moment on my own I will put all the info everyone on here has kindly forwarded to me and hand it over to my friend who can pass it on to her relative, any out come I hear back I will let you all know.
Hi MaryF, I'll have a look at your links as I treat a friend who has been diagnosed with MS and his outlook is rather bleak - chair-bound and unable to feed himself. I don't know his medical history but the GP had recommended he take 300iu of vit D3 and did not prescribe LDN. He tries to fund some of his treatments but hasn't enough money to do so. (I do not charge for my weekly visits.)
I have just been reading some old posts and came across this link. I do hope your friend has found out what is wrong with her and has had proper treatment.
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