Hi I have been suffering from a number of new symptoms but when asking docs about it I wasnt taken seriously .......

[Gisele]

and its driving me slowly nuts!!! Every night and several times during the day my fingers, then whole hand keep going dead....it then hurts in the crease of my elbow as though someone is cutting off the circulation. It wakes me up and wont go away for a good five minutes, sometimes its both hands sometimes just one and it makes no odds how I have slept. Also when trying to apply mascara or pluck eyebrows or even drive this keeps happening and its beginning to scare me as it leaves my arms and hands with no strength what so ever!! I also have accompanying pain in between shoulders but have had this a long time....it seems to gradually be getting worse. Im on a cocktail of drugs but have been for a long time too.....can anybody help please please please I am a portrait artist and will definitely lose my skill at this rate....my eyesight has also slowly decreased but generally without pain except for the headaches which have become a part of life as does the tiredness which comes so suddenly and if I rest definitely makes me feel better.....soooo hard to explain to normal people and even doctors as half the time I forget what day it is leyt alone what symptoms I have and havnt had

[andreafm]

Hi Gisele

It is really annoying and causes more worry when Doctors are not taking you seriously.

I know I have the problem of forgetting what I want to say to Doctors and so I kept a simple diary of symptoms for a while. I give it to my specialist on the day of my appointment just before he see's me. Then when I go in it is so much easier because he talks about the problems I had written on my diary.

This way I feel more in control [and less stressed] of what the Doctor discusses and it achieves a much better response.

As for your pain and numbness, it does sound unusual, but could be coming from your shoulders or neck and not necesarily specific to your behcets. I get problems with my neck through spondylosis and this gives me pain in the shoulders and down both arms with episodes of numbness.

I manage mine with very gentle stretching exercises. I have a DVD from Barts Hospital for stretching exercises for people with Chronic Fatigue Syndrome. They are simple all over body stretches and are very gentle, non tiring but effective.

You can find other very gentle stretch DVD's from somewhere like amazon. I used to use one's for Elderly people because they are particularly gentle.

I used to have one from Amazon where you sit down to do the exercises. I think it was by a company called Alive and Active.

If you have any worry's about doing any exercise you should talk to you doctor or specialist first.

Hope some of this helps you

Andrea

[lesleyg in reply to andreafm]

Hi Andrea

Great idea about the exercises sitting down - I'll try and find something similar over here. I sit down to do nearly everything - including folding the washing.

Lesley

[Hidden]

What do you mean by not taken seriously? They didn't believe you? They suggested it might be nothing to do with BD? They refused to do anything?

Which docs were they? BD specialists? eg Neurologist, or GP?

It's hard to advise without knowing any of this. Make a note of what symptoms you have, when and how they affect your life. A brief record, eg; date, time of day or night, symptom, duration, effect, new? yes/no etc. Then you will have it to refer to if you see someone else. It will also help to distinguish symptoms.

It may be something like a trapped nerve in your shoulder - a musculo-skeletal physio or osteopath would be able to advise you.

It could be restricted bloodflow - if anyone holds their arms up for a long time they can go numb, but clearly yours is happening rather quickly, so you need to get it checked out properly.

If you have been on your meds for a long time then it could be time to ask for a review. People, medical problems and treatments can change over time.

Eyesight problems should never be ignored. Do you have regular eyetests? If an Opthalmologist suspects there is anything going on outside their expertise they can recommend an eye specialist.

In summary, I am not offering a diagnosis and I never would - I am not qualified to do so. Those are just examples to demonstrate there are numerous possibilities and suggestions that may help you to get some answers.

[lesleyg]

Hi Gisele

It sounds like the suggestions above are very good regarding the diary, and perhaps the exercises however maybe you should check first in case a nerve or something is trapped.

I have vaguely similar symptoms to you although on a milder scale (especially in my legs). Before I started on Thalidomide I already had some very strange results for nerve conductions studies. Unfortunately for me the Thalidomide affected my nerves very quickly (approx six months). This has left me with tingling and pain in my calves and feet and a feeling as if I have sand between my toes. They also get very painful. (Sorry to talk about my problems when you have your own but just to let you know we understand).

I have been very 'lucky' in the fact I finally have two specialists who 'believe me'. I had to laugh to myself - I started to say how bad I had been feeling and one of them said, "you don't have to convince me - I'm on your side". So obviously they understand that a lot of the medical profession still don't understand or accept the condtion.

Lesley