Hi everyone
I haven’t posted for a while but just wanted to say that I’ve seen a Consultant today regarding the Fatigue part of my symptoms. (My Neurologist had said that they needed to deal with my symptoms pragmatically).
The new Consultant (a Rheumatologist) noted that since October I now have new symptoms of numbness down my left leg, ankle, foot + weakness in that area. He also tested my balance which he said wasn’t good - I almost fell over, but thankfully he was holding me! However, he didn’t think these new symptoms warranted having another scan, as I’d had one 18 months ago.
Because my fatigue is a big issue and has been long-standing, he has diagnosed me with Chronic Fatigue Syndrome and is referring me for Cognitive Behavioural Therapy. He will then see me in 6 months.
I’m not sure that CFS is a diagnosis that covers all my symptoms as I also have considerable neuropathic pain, for which I take Pregabalin, and my walking is down to 10 mins max. However, there is nothing I can do except go along with his suggestion of CBT. I did rather get the impression from what he said that he thinks it is “all in my head” - something which I know others on here battle with.
So, I’m not sure I’m in the right place being on this site, as he is suggesting it may not be MS after all.
However, I just wanted to thank you all for your time, advice, support and encouragement over a couple of years now - it has been invaluable and I have appreciated it so much.
Bren x
Hi Bren, I have yet to be diagnosed with what is wrong with me. Just because I don’t have a diagnosis of “ms” means I’m in the wrong forum. I have made some great friends here and have found some very helpful information. I would not leave the forum.
Have you had any other tests carried out? or just the MRI?
You are wrong when you say there is nothing you can do about it, you can always ask for a second opinion if you are not happy with the current consultant.
Your brain mri can be normal and you can still be diagnosed with “ms” The key I think is how you get your symptoms across and whether you have a good thorough referral letter written by your GP in your support.
It is ridiculous for patients to recall everything in intricate details of symptoms. My first neurologist wanted me to tell him everything in detail from the past fifteen years which I could not do.
Hope you stick around and don’t give up, one day you will get answers.
M
I was dx with CFS , now theres a change of mind and its fibro,my symptoms fit in with both, but I also get symptoms that dont, hope you soon find an answer
Not so keen on a conclusion that 18 months is too soon for another scan when you have new symptoms, but I guess he had his reasons.
It’s probably a good thing to try the CBT - if nothing else, it should help you to deal with life with all of these symptoms and, let’s face it, we can all use a bit of that.
No need to rush away from here though - this forum is especially for people with weird symptoms whether they have got a diagnosis of MS or not!
Karen x
Hi Everyone
Thanks so much for your replies and your invitation to stick around on the Forum - I’ll defo do that! I’ll let you all know how the CBT goes & if its effective.
Fjear - regarding my tests. I’ve had an MRI of brain & spine - both have been neurologically clear, tho the spine one did show a lumbar disc protrusion. I had a VEP test which was borderline & an SSEP which showed marked difference in lack of strength of the signal (though not delay) in the left leg. I also had an LP but this was clear. So … I can understand them not thinking it’s MS, tho’ these tests were in 2009 (apart from the spine scan which was 2010).
Time will tell - in the meantime, thank you all again for your support & do hope you’re coping OK.
Take good care, Bren x
Thanks Kel. I did wonder about the CBT being more for anxiety than coping with fatigue - someone in my family had it and said it was for anxiety too. I guess the Cons thinks I’m anxious!!
I’ll make enquiries about the CFS clinics in my area - sounds like there is a long waiting list 'tho if you’re having to wait until April.
Thanks so much for the info Kel, & do hope your cfs clinic is really helpful for you.
Tak care, Bren x