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Discussion Starter · #1 ·
Hi there! I'm Melissa and have not been diagnosed yet. I have been having symptoms for about 10years now. I started researching lupus about 2 years ago and realized that it is the only explaination for everything I have been going through. I have been to several doctors and a rheumatologist, all who have told me to have my head chekced in not so many words. Which believe it or not I have actually done, because my husband thought I was going nuts too. He did for about a year until I started having sezuires and red patches showing up on my skin. Also, bruising and chunks of hair coming out. It took all that for him to believe me, although he still has his times that he says he is just sick of me being sick.

Anyhow, I'm glad I seem to have found a place for some support. I really feel like I am either going crazy for real or there is not a doctor anywhere near me that knows what they are talking about.
 

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(((((((Melissa))))))))) :welcome:

Don't worry you aren't mad even if it feels like this might drive you there :hug: as you said you just haven't seen a doc who knows enough about these sorts of diseases.

We do have a find a doc forum and someone can probably recommend a lupus savvy doc near you, so it's worth putting a post in there :)

Many people here will be able to identify with what you are saying and how hard this is. Any questions just fire away there is always someone who understands.

Are you seeing a Rheumy now and do you have any medications which can at least help some of your symptoms?

take care
love
Lily
 

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The one and only Rheumy I have been to told me to get a psych eval and that no further appointments were nessesary and walked out of the office. He said that there were no blood work results that made him think I needed a Rheumy at all. I did have a "borderline positive" (at 185) ANA a year ago but no other doctor since that one has bothered to run an ANA. Which after some research I come to find out is not even a way to see if you have lupus for sure, just to check that one level.

It took me 2 years to get to a Rheumy at all so I thought that I was really making progress toward a solution, then he turns out to be a jerk.:mad: Now it is going to take anoher 4 months to get through the general practice, then the refferal process then waiting for a appointment to open with another Rheumy just to see if they can/will help me.

So far I am just taking ibuprofen to help wth some of the swelling and staying in bed when I can, which is not alot cause I have a 4 yr old autisic son and a 2 yr old (going on 20:)) daughter. Thank you for replying so quickly, it's one of those nights--if that makes sense.
 

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Hiya Melissa, I think you have been treated appallingly, so sorry you have had so much to put up with... the psych advise is such a medical shrug due to lack of knowledge and disgraceful care.... be assertive, you need some answers and you need to be as well as possible for your young family..you also could do with some relief from the pain. I think a search for a Rheumy with auto immune knowledge would be a good start, also start jotting down your symptoms in a daily diary with photos of rashes/swollen joints etc etc, grade your pain 0-10 and where etc etc.... you need some blood work run and to have people working alongside you, lupus or not, you need something to treat your symptoms. It might be good to take your husband or somebody close with you to the consultation so he can tell it from his perspective and support you. Why does it take so long to get through the GP process?
Take care,
Claire xx
 

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Discussion Starter · #5 ·
It takes approx. a full month just to get an appointment with my GP then I have to wait 48-72hrs for a refferal to be put through, then another 7days for the Rhuemy to get the referal before I can even call to get an appointment with them which is usually another month out.

It's crazy. And thank you for the tip about pictures, I have never considered that, I am usually sitting there trying to explain what a rash looked like or the fact that what they are actually looking at is NOT my normal skin because they "can't see anything". My skin is not normally red patchy and swollen believe it or not doc, :).

Does anyone reading this know of somethings I can do until I have something found out? Like at home as far as the fatigue and pain? Or som way to get these rashes on my chest a bit less visible?
 

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Poor Poor you

I have been there for 3 years untilt his year. I was never sent to anyone about my " depression " although i was sent to a liver specialist about my raised ASt / Alphos levels and even had a biospy, I was anemic and has heart problems which were " virus ". I got tot he stage where I almost believed it myself and then this year thought " Okay so for £150 I will pay myself to see a rheumy and then if he tells me there is nothing wrong with me I will acccept it.
He didnt , he said I had SLe after further tests.
We all know our bodies better then anyone else.
They play on your mind.
Be strong, keep a good diary of your symptoms and make 2009 the yaer yous ort it out.
I can give no advice no one else hasnt but take care of yourself and dont give up, you need to get better and get medical help for what ever your condition
Good luck
Pam
 

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Hi Melissa,

I just wanted to say welcome and sorry your having such a tough time of things.

I agree that you need to keep a journel of symptoms and take pictures of the rashes as you get them. This is very helpful when you do go to the doctors.

Join us in the chat room sometime. Hope to get to know you better.:wink2:
 

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Hi Melissa :)

That is a long wait to see your GP :( and not ideal for someone with a chronic long term condition. Is there anyway you could find another one where they would see you at shorter notice? That would be better for you, even when you are under the care of a Rheumatologist. Sometimes we need to be seen quickly.

It's not uncommon in most places to wait about 2-3 months to see a decent Rheumy.

Ibuprofen would be helping you a little but it's probably not the best anti-inflamm for us to take. I actually found it made some things worse and of course not being prescription strength it failed to cover me for more than a few hrs. so I was swallowing buckets of the stuff during the course of the day with pretty inadequate coverage of my pain/fevers. Once my GP prescribed a different anti-inflamm (and there are many) things improved a little.

The other thing you can do if try and take care in the sun (sunscreen hat limit exposure etc.) and get enough rest - listen to your body. Don't overdo all at once because we generally pay for that pretty badly by spending a lot of time in bed recovering. In other words try and pace yourself and when your body starts protesting then heed the warning and take it easy.

Good luck with finding a good Rheumy and let us know how things are going for you.

love
Lily
 

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Hi Melissa,

Keep fighting. I know finding the strength to do so, is hard when feeling so very badly. I feel so badly for you..I too, went for years and years without being taken seriously. I was just thought of as a mental case.

Also, like you..I fiqured out what was wrong with me myself. If I had not learned how to use a computer, I wouldn't be alive today.

You hang in there and fight for your life.

Best Wishes,
Sandy
 

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((( Melissa ))), you have been treated terribly and I am so sorry. The others have given you great advice. What have done about the seizures? Keep posting and let us know how you are doing.

Take care

Deb
 

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Hi Melissa, if your mad so are we :), i really hope they can get to the bottom of things for you, some ppl here have had trouble with dr's ,and some have good dr's, but when you dont get one thats helpful its darm hard on the patient. keep pushing, even if you have to see someone else


all the best Lin xxxxxxxxx
 

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Hi Melissa,

my aunt is a consutant dermatologist in Oxford, and so she always gives me great advice.

As a patient you are allowed to demand a referral to see any specialst doctor you want to -any body at all!

So find out a good specialist Lupus hospital near you and make your GP refer you. My GP was totally useless so I asked to go to the RNHRD in Bath, and have been there for 8 years now - even though I've moved to the other side of the country. They're brilliant, and have since diagnosed me with a heap of other Lupus related problems too. Just knowing what to treat and how will make a huge difference to your life and you deserve to be helped.

So demand a proper diagnosis from a Lupus clinic. It's your right!

Good luck!
 
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