Hello - I am new to this forum. Having had a diagnosis of M.E. for the last 18 years (and being unable to work) my symptoms have changed and ‘got louder’, and following a really intense ‘headache’ lasting 3 days following the trigeminal nerve and behingd the eyes with accompanying stabbing and shooting pains, I now feel better but worse! I can’t sleep (this is the 5th night with little sleep) I have the attention span of a goldfish, poor short term memory, tingling in my legs and hands, weakness in my left arm/hand, giddyness, to name the symptoms I can remember. I have asked my doctor for a referral to a neuro.
Is this MS? Anyone else experienced and ME to MS change? Any advice about where to ask for a referral to (I’m about 10 miles north of London in Herts)? Any advice on the symptoms - especially lack of sleep which is a b*mmer?
Any advice/help/expereinces gratefully received
Hi I noticed your post had gone unanswered, so I am hoping to bump you up.
Has your GP made the referral then?
Only a specialist would be able to answer your question.
So many chronic conditions can overlap or mirror others.
My own story is a long one of mis-diagnosis and I am left with a half diagnosis after 16 years.
Hi After 4 years of symptoms and abnormal Neuro exams, during which time I was referred to an ms nurse for support, I have a possible me dx as all MRIs were clear. Me team have advised me to keep an open mind, report any changes, and ‘don’t close the door on the possible ms dx’. So it’s definitely possible. Keep an open mind and push for the referral. Good luck Becki x
Hi I have been diagnosed with CFS/ME and also MS and have had them for about 10 years
Sorry to read about your condition, I was diagnosed in February 2013 after 17 years of various problems I rekon it’s due to very little understnding by doc’s and they can’t join the dots of the varied symptoms. I also get the severe Trigeminal pain in fact I seem to have the same symptoms you mention.I find Gabapentin helps with the Trigeminal pain with manageable side effects.Dietary changes and a positive outlook helps with general living easy to say I know ,I have PPMS and been in a wheelchair for the past 19 months and it took a while to discover what I had but also humour makes it easier for myself and to help ease others around me. As for the sleep I just take it when I feel I can so that means naps bit strange being only 46 but hey gets me through the day. Being insistant with the doc’s got me to see a neurologist but it was a fight and things were only confirmed after he carried out a lumbar puncture. Sorry I can’t give you advice on where to go for I live in Ireland. I wish you all the best and don’t give up