ME/CFS

[Misty57]

I have suffered from me for25years or more. I am now 66 started having dizzy spells and severe headaches, to cut a long story short after many MRI scans. I have three tumours in my brain nothing to worry about they are small. But I also have demyelination we’re the myelin sheath has broken, that can mean MS after a lumber punch my neurologist said I do not have MS it’s the ME as caused this anyone else heard of this I feel I’ve been left in limbo

[Meditationlover]

Yes, I've heard me can cause your symptoms, I know this as also saw a neurologist for suspected ms, but it was not xxx

[Yassytina FMA UK Volunteer]

Hello, not helpful in getting answers for sure, I can empathise as I have both cfs/fibro not the easiest too deal with sometimes on a daily basis is it, I am now 62 but some days feel like I am so much older . Xx

[klr31]

Can you get a second opinion?

[Misty57 in reply to klr31]

Hopefully as I’ve had lots of mri scans and a lumber punch, but I wouldn’t know how to go about.

[klr31 in reply to Misty57]

I hope you soon get some answers.

[Misty57 in reply to klr31]

Thanks

[Matrix]

Same and also dizziness recently las 10 months or so .I have fibro ,ME and quite a few other things ,I wish it would go .🥰🥰

[klr31 in reply to Matrix]

Have you had your thyroid checked?

Karen

[Matrix in reply to klr31]

Yes years ago with private specialist he gave me thyroxine and I felt great but then my drs got a call from the local specialist who said I have to come off it .it wasn’t good for my heart and they say I’m borderline every time ,meanwhile I feel horrible have all the symptoms of under active thyroid ,hair loss brittle nails everything .🥰🥰

[klr31 in reply to Matrix]

I would join the thyroid group on here, health unlocked, as there is good information on there and lots of others going through similar problems. You need to get your thyroid blood test results, the numbers with reference ranges. Also, check D, B12, folate and ferritin, even if you have to through a private online company recommended on there. I have M.E and Hashimoto's, which is underactive, and it took me years to realise that I had a thyroid problem and then get it properly treated. Many doctors seem to know so little about it and its impact.

Good luck.

Karen