Hello and need a good neuro

[MsAndyIvy]

Hi

I’m new on this forum but a member of Lupus one.

GP and rheumatologist both seem to think ME as they’ve run out of options after much testing. I have a range of small anomalies from an old ruptured aneurysm to early onset white matter changes, elevated CSF protein and odd things with blood. Nothing that adds up to much.

Both GP and consultant seem to think a bit of CBT will sort me out and one actually asked ‘Are you sure it’s not all in your head?’!!!

My symptoms do fit in with ME but also have additional ones that don’t. I’m confused.

Can anyone help with the name of a good neurologist in North West area please?

[Hidden]

CBT is seen as a treatment for ME however I can't see how it will work. Certainly it can help with the side-effects of ME - the anger, depression and feelings of despair, (well that was my experience) which in turn can make things better all round but not effect the ME as such.

I've tried a multitude of things for ME and now take a number of supplements such as Q10, Iodine, l- arginine, B vits, D VIt along with other drugs for a different condition and I've found an improvement with them.

I'd go along to the CBT, (I did when it was offered to me) see what they say and what they can do - you never know how it could make thigns better untill you try. I was sent home halfway through the assessment as the lady realised I wsan't a candidate for CBT - no mood problems, (at that time although about a year later I became depressed from my ill health and loss of job). At least the Drs knew I was trying everything they were suggesting but unfortunately they did nothing for me and it was the info I got online that made things better.

Please look into Vit D - [anyone above Barcelona should take a supplement in the darker days as we do not get enough and an ME suffer who is inside all day DEFINITELY needs it.

I was advised by an ME specialist and a very good man he is too, to:

Avoid dairy, (f**king very hard for me but grand now I am on it I tried all the milks and have settled on coconut which isn't too bad - I miss my lattes ).

Avoid gluten - I feel a lump in my stomach soon after eating gluten and I never had a problem before.

Take Vit D - he prescribed a loading dose then down to a regular dose and things got better very quick with that. I had problems with my Drs as they were reluctant to test for Vit D or prescribe it but I got one test initially and my D was low.

Meditation and mindfulness. VERY IMPORTANT, VERY VERY IMPORTANT. Don't think of what you are missing or how bad life is. Keep the focus narrow and use meditation and mindfulness to ease some of the more nasty mental machinations. I found drums very good for the anxiety attacks I was having with ME. In fact through the drums I managed to end all anxiety.

PACING. You are a car with a half full tank of petrol - you will only do so much and pushing beyond those limits can have a very detrimental effect, (I know because I have a problem not doing - so I push myself to do some work around the house then spend a couple of days sleeping to recover from it.

I think that's it but it is enough to make a great start. If you follow my post I think you should find an improvement quite quickly.

Hope things improve soon, take care

raffs

[MsAndyIvy in reply to Hidden]

Thanks Raffs

Great advice already doing loads of that already- supplements, meditation, mindfulness, pacing, counselling

It’s just the glibness of medical practitioners about CBT that’s annoying.

Not sure about lactose. I’m a cheese freak and allergy testing via GP has shown no intolerances!

I go from Woo Hoo! days to Boo Hoo days cooking Sunday lunch can see me bedridden for 3 days.

Acupuncture helping with headaches as well.

So difficult adjusting from a fit, vibrant professional to ... this.

Anyhoo... need to keep chipper.

[Hidden in reply to MsAndyIvy]

Yeah I hear you about that change. I lost a much loved career and went from working or 'doing' for up to 20 hrs a day down to lying sleeping for 23 - 24hrs a day. When you get to grips with that change of circumstance and ability things seem to get a bit easier, well for me anyway.

Of course for the majority of health professionals the CBT will cure us of our madness!

[Ravensleigh]

Not a cheap option but try theoptimumhealthclinic.com/

[MsAndyIvy]

Ooooh looks good. I have some health insurance that my cover some of it. Thanks!

[Patdoyle]

I saw Dr Malcolm Steiger atFairfield Hospital in Wigan. Very nice man.