Still fighting

Hi I'm new to the site ..I've was diagnosed with behcets in November if last year after loosing my eyesight in my left eye . I have been I'll for about 15 years after suffering numerous miscarriages and then eclampsia which led to my son bring delivered at 38 weeks but unfortunately died . I was diagnosed with kidney nephritis 4 years ago after being hospitalised a number of times in extreme pain and bleeding . Was diagnosed with lupus 6 years ago and after 3 years told it's probably something else . I suffer from weekly ulcers .chronic headaches , tremors at the moment I have been in a permanent flare since June 2013 . I know use a stick to get around the house I have been on long term sick from my job as a nurse since April 2017 . My mobility is really poor at the moment I take 3g of cellcept ,50mg of prednisolone , naproxen , co-codamol and 25mg of nortriptyline daily . I have been seen at Birmingham's centre of excellence and cannot praise them enough. The last 2 weeks I have had numbness , tingling and shooting pains in my hands , feet arms and legs and find it difficult to grip anything ... would be interested to find out whether anyone else as this. I am starting anti tnf infusions today so fingers crossed . Sorry about the long post . Sending big hugs to everyone who suffers this horrible disease . Keep fighting we will win xx

[Ingridbockes123]

Thank you for sharing and yes we keep on fighting.

I wish you some relief from all your symptoms and pain

Peace

Ingrid

[Hidden in reply to Ingridbockes123]

Thank you ever so much , it's nice to know we not alone .xxx

[belle623]

Hi Scruffymouse

I am so happy you joined! I am terribly sorry you have been feeling so awful and dealing with so much.

Thank goodness you are at the center now. From my understanding once you start taking a TNF blockervwith other meds you will start to see feel some “ relief” or change.

I have the tingling and most of the same symptoms as you. May I ask how do you approach nutrition? Others and I have found the low- inflammation approach, high protein helps tremendously. Lots of waters as well. Forgive me if you already do this.

I am in the States, so please forgive my ignorance. Do you all have access to a site dog? Or even a therapy/med dog? I have also found this has helped me tremendously.

I hope your infusion goes well today. Positive thoughts xoxo

Keep us posted

Ash

[Hidden]

Thank you for all your advice I think I will try the high protein diet at the moment I get do sick it's really hard to eat . It's nice to talk to other people going through the same things , sometimes I don't recognise my body anymore ...lol . Thinking of you and sending you big hugs. I will look into a therapy dog xx

[Retriever]

Hi. Gosh you have had a difficult time. I attend the Behcets centre in London. It’s so good to be able to be seen by a team who really know the condition. I have had a bad year culminating in a recent 3week admission to hospital with pneumonia and pleurisy combined with the worst flair ever. I take colcichene which helps a lot with the ulcers. Also now on inflixamab infusion. I’m optimistic that this will really help control this horrible condition. Trouble is between that and the large amounts of steroids has left me immuno compromised and open to multiple infections. So optimistic that 2018 be a good year. In the meantime I have recently resigned from my job (I’m a nurse too) because I just can’t manage it anymore.

I wish all those with Behcets and all those working to help us a wonderful family Christmas with all you might wish for you and yours for the new year.

M

[Ashveer]

Hello all, if anyone has the time to answer this post, I already posted here but not sure if anyone have the similar situation wit disartheria that I suddenly acquired as I was rushed to the hospital, and high dose of predinsone and now at home with azathpurin and small dose of predinsone with antibiotics....will I be able to speak normally again? I mumble a lot and takes lots of strength to force my tongue muscles, slowly I can talk better, but normal conversation at phase is difficult, please help...tks Ashveer - I do have tremors at back of neck and arm right hand tremor, at my initial assessment in the emergency room, I was told that likely it is Crania Nerve 6 involved among other nerves obviously...tks for any help

[UKADMIN Partner Behcet's Syndrome Society]

Welcome to our wonderful community here on Health Unlocked Scruffymouse and thanks for sharing. Everyone is so friendly, caring and helpful here. I just want to let you know that we are here is you need us [e-mail] We can help with information, signposting and we have a conference and a family day each year. Good luck with your new treatment.