ENT doctors or specialists give us your advice please

Posted , 7 users are following.

There must be specialists or doctors out there who come across this site and wouldn't it be a good gesture if they responded to some of the questions on here.  I know there is one doctor that does. Why do others not follow and help us here. Is it because they are too busy or they dont get paid so they dont bother. If this was my speciality I would want to share my knowledge with the hope it would help someone. Whether this site or another.  So come on UK doctors get involved and help because you want too.  Until then we only have each other on this site and hopefully we can make a difference. When you are new to this it is most frightening and to see an ENT takes months or you have to go private like I had too. I paid for my first session 200 pounds had to sell my car to do this. So not right!!!

Help us to help ourselves and don't just fob us off. We have a real condition that effects our everyday. We cant get disability money for it either.   We can't work socialise go shopping, do all the normal things we once did. Many of us will cope as best we can.  This site is so important to us its a source of reassurance.

Let see more doctors specialist etc on here giving advice.

    

0 likes, 15 replies

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15 Replies

  • Posted

    There is an ENT that is part of the baord.
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  • Posted

    I so agree Liz! I spent alot of money until I found the right specialist (on the NHS) who actually helped but the disabling nature of this complaint and its invisibility is so distressing. I wonder if anyone qualified will respond. Well done for asking. All the best.

     

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  • Posted

    Hi Liz

    I'm not a doctor, but wanted to say Thank you for posting this, it would be very nice to see a doctor who can give real advice, not someone who will just ask more questions and not really help.  I know doc's are busy like the rest of us, but even posting to the general board about things they have done with patience and that could help even one of us, would be so great.  I have an endocrinologist I have been going to for years for my hypothyroidism and he has a message board online that he answeres questions to anyone who asks and it really nice to get real help.

    You are so right, we struggle everyday and it can be very depressing watching the world go by and we can't do all the things we used to.  Its kind of like a death in the sense of the word and we mourn our own loss of self.  

    I hope your message will reach someone who is willing to help and thanks again for your support.

    Hugs

    Patty

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  • Posted

    I agree it would be wonderful if we had a dr that would reply in an ideal world yes, but unfortunately anyone can pose as a professional on forums I'm afraid. And yes it can take months and longer to get a good specialist that understands what is going on in our bodies. Takes patience time and in lot of cases money it's heartbreaking when you have lots of issues going on in our bodies we want answers don't we. And a lot of the drs we see don't even listen half the time soooo frustrating it's like banging our heads against a brick wall. Visiting the dr coming back and thinking what a complete waste of time that was and taking so much energy to get to drs in first place

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    • Posted

      I so agree on doctors not wanting to take the time, not believing what you say or just not wanting to deal with it. But yet they still get paid for a 'useless' appointment.

      And true that you can't be sure in a forum such as this that just because someone claims to be a Dr. doesn't mean they really are. They have online sites where you 'ask a doctor' but you also have to enter a credit card number in order to get a response. And I'm even skeptical on whether these people are the real deal. I guess it basically boils down to finding the right doctor . It can be hard, frustrating, ad time consuming but when you do come across a doctor 'who truly cares', then you will know.

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    • Posted

      That's right they do get paid for a useless appointment yes I've seen the online site where you can ask a dr I wouldn't enter my card details either yes it seems it's all down to getting the right professional to help and so many of us are struggling to find a decent one I must admit I am tempted to try various solutions to help myself but having an autoimmune condition of the liver. I can't always take certain supplements and potions so I'm just sitting it out which is very hard waiting trying to keep positive and reading up on everything I can 

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  • Posted

    I do agree. I can't see any reason they shouldn't unless, as you suggest, they want to be paid.

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  • Posted

    I think that doctors don't know much about this system. There appear to be no good treatments for us out there. I had to find out what worked for me by trial and error. The doctors were of no help to me(except a neurotologist who just gave a diagnosis).

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    • Posted

      Well I tried a large number of medicines on myself without any doctor's permission. I found out that only benzodiazepines work. The benzodiazepines cut down the intensity of vertigo/dizziness by 50 percent and alllow me to function. Without the benzos I would be disabled. An older and a more dangerous group of drugs called the barbiturates also work on me. Both the benzodiazepines and barbiturates are depressants of the central nervous system. I want to find other drugs since it is such a hassle to get benzos prescribed but so far I've not had any luck.

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    • Posted

      I have been dealing with dizziness/vertigo for over thirty years. It was either congenital or I acquired it when I was an infant. Basically I've had vertigo/dizziness for as long as I can remember. When I was an infant I caught an ear infection and it probably damaged my vestibular system(it took the doctors a long while before a doctor was succesfully able to diagnose it ).

      My diagnosis is left peripheral vestibulopathy or left peripheral vestibular lesion. I also have some hearing loss. This was diagnosed by a neurotologist.

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    • Posted

      Oh ok thanks. My daughter-in-law has experienced vertigo for the past year or so and has seen one specialist I think, an ENT. She's never gotten a positive diagnosis though but in the past she did have problems with ear infections quite frequently.

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  • Posted

    Hi everyone thanks for your response. As some have pointed out we wouldn't necessary know if someone was a fake or genuine doctor but we would all do our research and ask our own doctors if we were not sure. I think we have become more knowledgeable about this horrible condition and so it might be left to us to help each other as to what works and what doesn't. Our symptoms are the same but the cause and effect may be different. As for me I await still to see any specialist on the NHS. Paying so much for private just to be told some tests you have passed so go away and it will get better in time. For all of us time is long and everyday and nights are painful and a struggle to cope with. Brain fog, sensations,waves in the head,tingling in the fingers and feet,fear of falling,adverse reactions to tv computers,lights,shopping,socialising. The list goes on. What medication works and what doesn't. So it's easy for the doctors to say get on with your life but we so try and there are times we are brave and other times we cry it gets to us. So we wait months to see someone to tell us I'm afraid you have to live with this do these exercise they might help. Yes some do but leave you feeling worse after for hours and days ahead. Then you get migraines. So yes if someone genuinely from this specialist area could give us some advice free it could help so many. Until then we support each other and I thank you all as I've got some good advice from here. As for what I do. I take cinnazine it's a travel sickness tablet to steady my dizziness. I get it off the doctor after a friend who had vertigo said it worked for her. Can make you tired so I take one tablet half in morning and one later. I'm going to try just half a day soon. I watch little tv and put anti glare lenses over my glasses when I do. Limit time on computers took the background light down.read books do puzzles for the brain again one hour max. Exercise go for a walk or cycle not too far but try to focus and it's difficult. Rest plenty of rest shut your eyes when you can. Drink ginger lemon and honey,I'm taking ginkgo supplements to see if that works. Eat healthy. Stay positive that's the hardest one. So if anyone has any other tips please share this.

    thanks again

    luz

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