Not alone

Ok people,found leasions on my scalp,have the flu,having problems with communications with my GP,on Hydroxychloroquine,pain killers,statins.Who is going to be able to giveme adequate advice?Are we all going through this?I do not doubt for one moment that I am alone but,I really do feel that we need more accurate information on Lupus.I really do hope that our GP's are more aware.I am not accusing them but,very limited when it comes to Lupus.Find a Lupus aware GP

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  • Binkey......., am sorry to hear that things are not so god for you right now. But I also am 100% behind you about the lack of knowledge regarding Lupus. I was diagnosed 7 years with SLE after months of skin flare ups, weakness and fatigue, chronic joint pains etc etc and it was only after I woke one morning and my legs wouldnt walk anymore that the hospital started more in depth tests on me.

    It toiok very little time to make the diagnosis but i was given NO help, support or advice at all, other than to read more about Lupus on the internet.

    I did this and to this day I wish I never had as it was the most scariest thing I have ever read. There was nothing positive written, only the worst case scenarios. From that day to this I do have regular medication to help me manage the pain but even though I am under 5 different specialist, none of them actually agree that is is actually Lupus that I have. I am soooooo tired of not knowing the truth and not being able to find one doctor/specialist that knows what they are talking about

  • I just don't know where to turn.Being given conflicting medications by your GP does not help but,dare I say anything.No.I am 63 years old and getting more and more dispondent by the minute.Even just asking my surgery about the flu jab has become another issue.I just asked if I should have the jab as I am 63.The aggressive response was,if I did'nt have asthma or diabetese I was not entitled.I explained that I was just enquiring and not actually asking for the jab.I suppose these people are only human but,we do depend on them.I am so sorry to hear you are going through similar circumstances.Where do we go from here?

  • You are entitled to the flu jab! I am 41 and my Doctor advised me to have it because I have Lupus SLE. Don't give up! x

  • Hi Binkey, I think maybe we all feel a bit like this at times, I was diagnosed with Multiple Sclerosis ten years ago and was treated and supported well but three years ago I started getting headaches and was tested and Lupus was confirmed, after lots of drugs, some of them horrible, they still can't confirm Lupus and are now saying Auto-immune problems, so I live with weak legs, migraines, a weak arm and other problems and my life has changed so much and I still don't know exactly what has gone wrong! I guess the doctors are only human and are struggling with this very strange illness themselves. :):)

  • I do agree that it must be difficult for Doctor's who deal with Lupus but,where do we go but to them.Let's face it,some Doctor's are much better than other's but,as I have said before,we do rely on them and do not want to feel as though we are committing a crime by querying our illness.Wrong medication is a major problem in general but,again we have to take the pill's prescribed.

  • Have just been trying to find another GP on-line in myarea,even that is turning out to be frustrating.Spent over 25 minutes just trying to get through to one surgery I had found(being told I was fourth in line for 15 of those minutes)I decided to redial(answer service voice) and tried the office hours service.The machine then told me I could not get through by phone during those hours.that can't be right.It is best I just leave these attempts at the moment I am just getting more and more frustrated.

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