Had pain and confusion for 6 months

I had a c t scan about 5 weeks ago but showed nothing but I have got worse since then think something else has happened not getting signals to let me no when I'm hungry think something has happened to the nerves can't even think to conversation with anyone feel lost even my family

hi angela. i'm so v. sorry to hear what ur going through. it sounds pretty horrendous. have u been diagnosed with ME/CFS? have u had a blood work up completed? have u had ur b12 & folate levels checked?

Caitlin

Hi had all the tests done I've suffered fro this illness for 25 years relapsed 6months ago and my g p said it was my illness but I've never suffered so bad and I think something else has gone wrong but I asked him to get checked out and he said there is no point but I just no there is something wrong and I'm very scared

hi angela. so sorry to hear that. do u know what caused u to relapse? have u had a recent b12 test? i had a horrendous pain in the back of my head with (non age realted ) chest pain & collapse. once i got my b12 & folate deficiencies these symptoms have reduced measurably.

Caitlin

Hi had b12 checked all ok was low in vit d but been on them for a while the weakness is awful in my head for 6 months just can't cope with it don't no what to do don't no why I relapsed but something is just not right to be like this everyday no change

hi again Angela. i think the GP should refer u to a neurological specialist. if s/he isn't prepared to do that, then i'd go to A & E.

Hi he did try but cause I seen them 3 yrs ago they knocked me back but things have changed but my g p said my symptoms r the same but I no they r not don't no who to turn to I've never been as bad as this frightened it won't go away friends and family have never known me as bad

i'd just keep onto the GP Angela. or if u can afford it ask for a private referral. a lot can change within 3 years. btw, the medics are obliged by NICE guidelines to treat our symptoms.

Hi went private to see neurologist and he just said think it's a relapse that was it waste of time need to get either m r I or nerve conduction test to see what has happened but my g p said waste of time was put ion diazepam but that make the weakness in my head 10 times worse feel as if I am drunk and I don't drink it's a nightmare

gosh, it must be really frustrating for u listening to the lazy response from some of these medics. have u thought about having a second opinion from a different consultant? it can't be waste of time to try to find if there's something causing or exacerbating the nerve pain? sometimes one has to be v. assertive to get these medics to act. they tend to put everything down to the ME/CFS without investigating &

or/and eliminating other conditions/causes.

Hi again, Angela. Just read your post that you've had this for 25 years. By "this" I assume you mean ME/CFS. I had kind of a similar thing happen to me, in that I'd had this illness for 15 years, then relapsed. Along with my relapse came all sorts of new, scary symptoms, like burning and tingling and heaviness in legs. I finally found an ME/CFS specialist, and he said these new symptoms were probably caused by an inflammation of small nerve cells in the brain. There's no way to know this for sure unless they do a biopsy, which I don't want. Others on this forum have mentioned nerve issues as part of this illness. So, my best guess for what's happened to you (and I'm of course not a doctor so this is just a guess) is that your relapse caused new ME/CFS symptoms to emerge. Especially if you've had all these tests, including CAT scan etc., I'd be surprised if anything else is uncovered. Unfortunately, relapses can cause new and mysterious things to happen, things we never thought possible. If you can, see an ME/CFS specialist (again, assuming that this is the illnes you're referring to in your post). Also, you might want to check out some coping strategies, because stressing out about your new symptoms is not a good thing. Try meditation, deep breathing, listening to music, anything that might help you de-stress.