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Hi,

I feel so lonely coping with my illness and I don't know anyone who has the same combination of illnesses as me, so I hope to be able to talk to somebody on here.

I am a 32 year old female who was diagnosed with coeliac disease in 2008. It was discovered because I visited my doctor about a burning mouth sensation which led to a dental doctor taking blood samples for ferritin, folate and various vitamins. The ferritin and folate were so low they were almost at zero, so this prompted a blood test for the two antibodies related to coeliac, which came back positive, and then I had the crosby capsule take a biopsy of my duodenum, also positive.

Since then my peripheral neuropathy has slowly but surely worsened and in 2011 I developed derealisation which has not gone away and in fact is now a permanent state of being.

However, on the positive side, since going gluten-free, I've not had any of the awful gastrointestinal symptoms which I had been suffering from since I was 19 years old.

I am pretty sure my short term memory has been in decline since last year since I've become extremely absent minded. I depend on keeping an up-to-date calendar in order to keep track of what I'm meant to be doing every day. I also rely heavily on habit and routine to keep me right. Since I'm only 32 I feel it is more likely to be related to derealisation than age. What do you all think though? What is your experience of derealisation and memory?

Although I have come to terms with the pain and derealisation symptoms, I am worried because they have continued to worsen. My doctor and consultant seem kind and interested to help, but so far they have just diagnosed small fibre neuropathy possibly associated with coeliac disease, through nerve conduction tests and neurological examination.

Right now the consultant has requested a vitamin E blood test which my local surgery has botched twice in a row. One of the problems I experience is how slowly things get done on the NHS at my surgery and general hospital. I have to wait 2 to 3 weeks to get any blood test done at my local surgery and then wait 2 to 3 weeks for the result. Since something has gone awry the past two times the surgery attempted to take my vitamin E, I have to arrange a new test. Meanwhile, 2 months has gone by and the health service has not been able to do anything else for me. Probably related to my case being a chronic and not acute one.

I think the derealisation has given me a touch of agoraphobia and antisocial attitudes. I used to be a sociable and lively person but these days I quickly get tired when in a leisurely situation with a group of friends. I don't enjoy being out and about on my own because I get anxiety from the way the world looks weird through my eyes. It's hard to explain but the world and the people in it look very defined as if they are not real, as if they are all actors on a stage set. Even my own face in the mirror looks like this. I don't recognise the person in my friends' photographs as the person I see in the mirror.

I am most at ease when in the company of just one or two friends and indoors.

At weekends, I used to enjoy drinking in pubs with friends (and I am a light drinker) but I can't cope with how run down I feel the next day.

Bizarrely, I find no trouble in enjoying exercise - I play badminton or squash once a week and go the gym regularly too. I can run as well and if not even better than I could before my illnesses started. Afterwards though I am exhausted (pretty normal!)

Lastly, there are two other symptom and signs which have worsened in tandem with my neuropathy - a rosacea like problem and mild yet definite changes to my toe and finger nails. The rosacea started on my chest, then appeared on my cheeks, and now my entire face except around my eyes (white panda rings!) is permanently flushed. It has spread to my neck this year - as if it has enlarged its area from my jawline at both sides of my face down the sides of my neck. I find that when I take ibuprofen it is much reduced. The nail changes are beau's lines on my toes and most of my fingernails, and Terry's nails.

Well, sorry if this post has been boring but please do reply with your thoughts as to my symptoms - any tactics on how to cope with derealisation would be great. As for the pain from the neuropathy, I sometimes resort to taking 30mg strength cocodamol to blot out the day but not very often. (Probably once every two months).





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