[debatat]

Hi I went to doctor on Monday as I have been suffering with another flare of joint swelling, pain and stiffness, only to be told that I have got lupus and hughes syndrome. The letter was dated August from the rheum whom I saw 2 weeks ago who never siad anything!!

What really gets me is that the gp said not to worry as the rheum siad I could have painkillers and that would help:rotfl:

I am going to see about a referral to st thomas and am reading the lupus book by Dr Wallace.

Its just that although I expected at some point to be told that is what is wrong, I have found it to be ahuge shock, and I am struggling with anger, sadness and fear.

My brain fog has returned with a vengeance along with my spasms and speech loss to add to joints.

I am feeling very alone, although I have been reading the posts and they really help.

Sorry for rant but has anyone got any survival tips?

Deb

 

[Katharine]

Hi Deb,

What an awful way to find out and very thoughtless of your rheumy (that's putting it politely)

I think you are already doing good things to cope with this - talking about it and learning about the disease. It is normal to go through all sorts of emotions after diagnosis and these will crop up from time to time even long after.

I think the most important thing really is to take life a day at a time and certaily not to panic. Lupus has so many manifestations and you need to remember that you will not suffer from all of them. You also need to remember that this board is not particularly representative of the general lupus population as most of the people who come here are newly diagnosed, not yet diagnosed or the rarer more severely affected people.

One thing I would definitely want to take up with your GP or your rheumy is the lack of disease modifying medication. If you have lupus, you really should be given plaquenil which is the baseline drug (and very safe) which helps reduce the frequency and severity of flares. Painkillers may be necessary too but they should definitely not be the ONLY treatment! If, longer term, plaquenil is not sufficient there are many other options to help control disease activity and give you a far better quality of life.

Don't hesitate to rant, rave, ask questions....

hugs :hug:
Katharine

 

[LolaLola]

Dear Deb, This was not a good way to find out. Katherine is perfectly right about the need for Plaquenil. Getting diagnosed is an emotional time but at least it is a step on the way to understanding your disease.
If you want to talk at all I am here if I can help.
xLola

 

[KarolH]

Hi Deb,

Wanted to check in with you to see how your feeling today.

I sure hope your doing a little better.

Katharine did give very good advice.

Let us know how your getting along.

 

[debatat]

Hi Karol

Thanks for thinking of me. I am not doing that well, I am very low and have had a bad weekend. For the first time since starting my aspirin I have had episodes of memory loss, speech loss and jerky movements down one side of my body. Sat afternoon I couldnt speak at all. My husband wanted to take me to a and e but I cant see the point, they dont know hat to do with me when I get there. I spoke to my gp this morning who said not to worry these things happen to me and then theygo away. I feel ilke a nutter and that I am going mad.

Hope that things are better with you

Deb

 

[Clare.T]

Welcome to the forum Deb
You have been treated with inexcusable lack of consideration amounting to negligence, in my opinion sorry to say, and your GP is a nincompoop. I am right now charging up my Clare.T (C) Taser to give them a series of zaps.

It is very possible that your neurological symptoms are due to the APS. These antibodies can cause all sorts of symptoms apart from the obvious strokes and thrombosis. I suggest that you do go to ER for two reasons- they should do some investigations which might reveal what's going on, second, if your hubby is willing to take you accept the offer.

I think your current hospital owes you an emergency appointment big time. Maybe you need a short course of blood thinners to see if that helps and of course some disease modifying medicines HAVE to be prescribed.

It's hard to get the best help when your are so ill and vulnerable - I hope your hubby will back and support you all the way

Many hugs
Clare

 

[Lily]

Oh dear Deb that really is shoddy care you have been given, I hope you along with your hubby's support and help can get better care in the future.

As Clare mentioned with those symptoms and with a diagnosis of APS it really is a good idea to go to A&E. They would be able to check you out and make sure nothing serious is going on and they just might instigate better treatment for these episodes. APS can be very serious and it's difficult for us as laymen to determine just what constitutes an emergency and what might be a passing and non sinister symptom. I say that but in the same breath I really am quite aghast at what that silly GP said and he's supposed to be a professional...........if something did happen then his bad advice and flippant attitude would go a long way towards negligence. He has no idea from just talking to you and without examining you at the time of the event just what the heck went on

Play it safe until you can get decent docs. Take care,

love
Lily

 

[LolaLola]

Dear Deb,
Is there any chance of you getting a better GP? Many of us have had to do this, some more than once! Do not fall into the trap of feeling you are being difficult or demanding. You deserve proper treatment. I used to be very jerky especially on the right side. It can be much improved with treatment.
Clopidogrel, (Plavix) is a good blood thinner if the aspirin doesn't do it for you.

It may be an idea for you to google the Hughes syndrome association, theirs is a reliable site, and puts it all very concisely for you.
A good GP is really necessary for Lupus patients, and can especially support you during the early days after diagnosis. Please give some thought to getting one!

xxx Lola

 

[Julie Paynter]

Hi Deb...

I know where you coming from i felt the same...but it does get better and your husband is supporting you, and we're all here.

I has found there's so many options and tablets that can be tried.

I'm on cell-cept and i'm doing well, still get bad days but managing..

Try and get rest and relax, and vent on us and not the loved ones.

Julie xxxxxxxxxxxxx :hehe:

 

[KarolH]

What Clare, Lily and LoLo said.......I could not have said better myself.

Indeed you need a better group of doctors to treat with. I have APS and they are right, it can cause all kinds of crazy neurological issues.

Please accept the offer from your husband and go to the A&E.

I wish I were there to accompany you. Like Clare, I would zap them with my teaser too.

Let us know how you make out moving forward and do yourself the favor of going on to Google and look up APS...(Antiphospholipid Syndrome or Hughes Syndrome). You may be surprised at what you find.:wink2:

 

[debatat]

Thanks for all your support. Just to let you know, my husband spoke another gp in the practice today, who understands more about lupus. She told him that until my blood results ( he could nt remember which one) rises I cant get any more treatment. She told him no diagnosis had been made yet!!!!

I dont understand what is going on. I am sick of one doctor saying one thing and another another. She told my hubby that they would know what iswrong in about 10 years and that all they could do for now is support me.

So I amgoing to make an appt to see her and ask for copies of all my blood results and letters from consultant.

The only really puzzling thing is that for the past 3 years I have flared really badly at this time of year exactly. Dont know why, whether stress, weather or??? Welcome any thoughts or ideas on this.

In the meantime thank you everyone for taking the time to reply and support me. I really appreciate it.

Take care

Deb

 

[KarolH]

Hi Deb,

I am pretty new to Lupus myself, just got a official diagnosis in June so I am learning too along with you but I can tell you that ever fall and spring I also go into a flare of symptoms.

I can only assume it is associated with the weather change and barometric pressure but I am not sure this is factual, just my humble opinion.:wink2:

 

[debatat]

Hi All

Thank you so much for all your kind words and support, they help to make me strong enough to maybe finally accept.

Since my last post I have spoken to my dad who has come with me to see rheumy in the past, who tells me that rheumy said 2yrs ago it was sle and blood clotting problem. ( I don't remember that at all although at that time was extremely ill, with clot).

Also been to see the gp that my hubby spoke to who said that my diagnosis of sle hasn't changed in 2years and its time I faced up to the fact. Have a feeling she is right, boy do I do denial well!!! Although this stupid memory loss and brain fog really doesn't help.

Trouble is I am so rubbish at explaining accurately at explaining my symptoms exactly. I turn into a gibbering idiot in the doctors office, despite having made careful notes. This time despite wanting a clear outcome I have left with the promise of taking anti depressants in new year to help me adjust to living with lupus. While to be honest I don't think this would hurt, I don't feel it is the total answer.

When I read others post I readily identify with a lot of how others are feeling and how symptoms are affecting them. How to explain the frustation that the fatigue causes, when things I never even thought twice about now have to be planned and spaced out.
To be honest I really believe this illness is something you can't understand unless you have it. For example I have caught a cold at the moment and as usual it has set off all kinds of wonderful lupus symptoms, joints, muscle weakness, bizarre spaced out feeling and not knowing where things are - horrible.

Still I do believe in positive thinking, and I am grateful for friends who have stuck by me and my wonderful family. Also now too for having found this site which has been such a help. Thank you so much.

Sorry for going on, hope I don't annoy you all with my pathetic woolly headedness!!

Take care

Deb

 

[debatat]

Me again

Just wanted to add that I was originally diagnosed with ms ( the progressive kind) and I wasn't expected to recover ( I was completely paralyzed down one side), this later turned out to be a clot and due to lupus, so really I have difficulty believing what the doctors say which is why I think I can't accept that it is lupus.

 

[LolaLola]

Deb, I am a bit confused here.
As far as I can see you need efficient blood thinners and a baseline lupus med. like Plaquenil. You will also need regular monitoring. This notion of 10 years before they can do more is nonsense and possibly dangerous.
x Lola

 

[Joandublin]

Hi there

Did you see the reply that Wheeliefab put on re your request for a new Rheumy? Here's a link to it

http://www.thelupussite.com/forum/showthread.php?p=525671#post525671

Your treatment (or lack of it) seems very dangerous to me. I have never heard of anyone who was diagnosed with SLE and APS being denied treatment and told that they need to wait for years to see what happens. It just sounds very, very wrong. Please contact the West Midlands Group for advice and information. They may be able to guide you better in your locality.

Let us know how you are doing
Joan:rose:

 

[KarolH]

I agree with Joan and this is appalling what is happening.

I was also dx with MS too and lived with that diagnosis for 3+ years until recently when APS and Lupus along with other things came clearly into play.

I hope you can get this resolved and get the help you deserve and need. I am outraged at the thought of how your being treated.

In the US, our dogs are treated better then this. I am really mad now after reading this post.

Gently hugs to you my friend.:wink2:

 

[debatat]

Hi to Lola, Joan and Karol

I am sorry if I am givivng you the wrong impression regarding my treatment. I am on low dose aspirin for my sticky blood, which is considered to be sufficient as the original clot was caused by the pill.

I have been on two courses of steroids, the first time for my arthritis and chest wall inflammation. The second time was for vasculitis ( my toes had gone black) and was kept on them for 8 months due to blood and protein in urine.

The rheumy tapered me off them as I had put on a lot of weight and got diabetes, I asked about plaquenil and he said he would need to check with the eye doc as I have had optic neuritis and uveitis.

He says he cannot justify methotrexate and he wont put me back on steroids as he felt they made me worse. He also doesnt want me to take nsaids as he says they are aggravating blood in urine.

When I visited the gp she showed me last letter from rheum which says I will have a proper review of meds at next visit and therefore am having bloods done before visit for the first time.

In the meantime I feel that taking anti depressants is a win win situation, if they work I feel better, if they don't I have further proof that the fatigue and brain fog are wholly down to disease activity.

I have spoke to west midlands lupus re my rheumy, and am going to give him one last chance, and if I don't get proper treatment I will ask for referral.

Forgot to mention, my rheum doesn't think I have major organ involvement and my gp says that as for past 2 years things havent progressed to life threatening I will be ok and that my symptoms are unlikely to progress beyond those already in exisitence. I think they are trying to placate me as I have got anxious about things sometimes.

Hope this gives you a clearer impression, as I am extremely bad at explaining things. For example whilst at gp forgot to mention my really annoying chilblains and what I think is a calcium deposit on palm of my hand, so I do have to take responsibility for some of this.

Thank you for your kind wishes it helps to have someone to talk to, who knows what it is like!!!

Love to you all

Deb x