1. Community
  2. Chest and lungs
  3. Sarcoidosis

bad taste of any salty food

Posted , 2 users are following.

rebnik
rebnik

does anyone else suffer from food tasting bad

has anyone else had their stomach bloat up so much and be constipated for over a month

My sister was diagnosed wiht sarcoid last year but has been in remission for ages

then we went on holiday recently  and she went down with diarhoe and sickness.. she took a week to get better .. we had about 3-4 days where she was fine

then her mouth got what she described as pins and needles

this got worst and her tongue felt the same and all food tasted horrible metallic she said

her stomach started to bloat up .. it got larger everyday like it was filled with gas

then her arms and legs started to get pins and needles too

she started to get really bad chest pains and couldnt sleep

we took her to a doctor on holiday who said the pain wasn't her heart

gave her some pain killers that didn't work and some ant acids which didn't work

as soon as we got home we went to our own doctor who gave her an ecg and said it wasnt her heart

all along we have been telling the doctors that it is her sarcoid but we seem to be ignored

we went back to the doctor as nothing was getting rid of the pain .. were told to increase the dose of the bulking agent that was to make her go to the loo (it hadn't been working) more ant acids were givine

2 days later i took her to A&E

again we were told after an ecg that it wasn't the heart!

she was given a CT scan and told it wans't kidney stones or gall stones

BUT at last she was given pain killers that worked smile

my sister was able to sleep .. peridocially

she is very weak, gets tired very quickly

does anyone know if all of these symptoms are typical of a sarcoid flare up?

especially the taste of food and the pins and needles in hands feet mouth and tongue

her next step is to see a lung specialist but she hasn't been put on the urgent list!

any advice out there 

0 likes, 3 replies

3 Replies

  • amanda93807
    amanda93807 rebnik

    Posted

    My late husband suffered these symptoms in the initial start of the sarcoidosis in 2008 and again when he had his last flare up in 2013. His was neuro sarcoidosis however and didn't have any problems with his lungs. Unfortunately doctors don't seem to recognise sarc very well and it takes lots of fighting with them to get them to listen. I fought till I was blue in the face unfortunately to no avail. What part of the country are you? Maybe demand to see who specialises in your area. I feel your frustration. Good luck
  • rebnik
    rebnik

    Posted

    Thank you for your reply... I do hope the sarcoidsis hasn't spread to her nerves now sad. Her eyesight also seems to be suffering this is her worst episode so far... Although she is gradually improving now that she has pain killers that are allowing her to sleep ... But it's a slow process 

    we're in Norfolk I don't know if there is a specialist in our area ... She paid to go private when she was diagnosed but with no real hope out there didn't really feel she had the funds to pay for more private treatment... So now she is going the NHS route but I swear her doctor knows nothing about sarcoidsis ... She also wasn't sympathetic about the food tasting so horrid .. Her comment was "well you can afford to lose some weight" truly insulting 

    big sigh

    • amanda93807
      amanda93807 rebnik

      Posted

      That comment is a disgrace. It really frustrates me that most and I mean most think that they are God. Can I ask has she ever worked with chemicals? There seems to be a link to it being hereditary but every person who I've been in contact with sarcoidosis so far has worked with chemicals at some point in their life. There needs to be more awareness of this illness. My husband was diagnosed by prognosis of illimination. Which when it returned the doctors still questioned what was wrong with him. It's a horrible illness. The best thing you can do is research and keep pushing with the doctors after all its only a job to them but to you it's your family. God bless you. If you want to chat I'm here x
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.