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Nettyunicorn
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Discussion Starter · #1 ·
Hi all sorry to be here again! I'm feeling low, realy low and suffering with more symptoms! I dont know if they are connected or not.

My Doctors just dont seem to undestand what an impact this is having on my lifeand my childrens!

Right now i have a strange thing going on. When i'm texting or typing i seem to be writing gobbledy goop even though i spell out everything in my head as i type. I have to read everything back and really concentrate on correcting. I am suffering headaches that come on quickly. Sometimes i can get rid of them fairly quickly other times the pain continues to move down my head, neck and shoulders.
Another thing is the shooting pains up my legs and up my arms, they seem to come out of no where and stop me in my tracks. Bit like electric shocks. It does not happen all the time but boy it hurts. I have had tests for carpal tunnel but nothing was found!
Another thing that is happening is tat when i eat, straigh away i get stomach cramps. Then hours after i feel extremely bloated and my abdomin hurts even to touch. I feel its trapped wind but nothing i try seems to help expell it. If you know what i mean. This is also happening when i wake in the morning and take off my CPAP mask!
I managed to go for a walk at weekend but it ended up really sunny and by the time i managed to get out of the sun i was red, swollen, hurting and extremely tired.
My legs below the knees have pitting odema and its nasty, makes my legs look abnormal.
I have told my GP this and he just keeps saying "Oh well its probably all connected and i dont want to give you anything in case it makes things worse!"
I hardly get to see my rheumy and even then he has basically told me i have to learn to live with this. I cant not any more!
I have to work but it takes its toll. I come home exhausted and need to go to bed thus my children miss out on a normal life. Their behaviour at school ad home is unruly and volitile.
I dont know how much more i can take! I know i have to find a way to get to the Lupus specialists in London but cant see how!

Sorry i just need someone to vent to that will understand.

Thankyou for reading and i hope i hav not spoiled your day!


Netty fromall to Sunny Devonxxxxx

thankyou for reading and i hope i have not put a
 

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Hi Netty,

Clearly your not feeling well and i am sorry your having such a tough time. I think you need a new pcp and a new Rheumatologist.

Has your blood work shown any abnormalities? Clearly if you have pitting edema in your legs then your retaining fluid. It seems to me that your being brushed off and it is time for you to fire your doctor and find a new one.

I do hope you can get to feeling better but the first step is to visit someone who will listen, really listen to what your dealing with daily.

I hope you start to feel better. It is very difficult when we do not feel good and yet have no answers. Remember, doctors work for us and we are the boss. If they are not working for you.....FIRE THEM, and move on to bigger and better things.

Finding a good doctor can sometimes be like trying to find a needle in a haystack. Frustrating.

Please let us know how you get along moving forward.
 

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Nettyunicorn
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133 Posts
Discussion Starter · #3 ·
Hi thanks for the quick reply,
I have not had bloods specfically for autoimmune taken for at least 2 years. At this time it showed ana 1:80 with speckled pattern i know his is low and could mean anything but testsdone beforewere neg. I had high inflammation showning up too.
My liver is showing raised emzymes and i have high BP. I have been told i have slight raynauds.

Oh i'm so at a loss. I dont know where else to turn! Can you just change gp like that and i'm on second rhuemy now!

Nettyxxx
 

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Hi Netty,

I was just reading back through your recent posts. From what I can gather you had a first Rheumy tell you it was lupus like and put you on Plaquenil, on a subsequent visit he took you off that and took away the diagnosis? Then another Rheumy put you on Imuran which had a bad effect on you? Tell me if I am following this correctly ;)

If that's the case then why can't this second Rheumy just put you back on Plaquenil, it's much less troublesome as far as possible side effects go and it's worth a shot surely!

Also you mentioned you were being referred to the Renal Unit, how did that end up? It's concerning you have high blood pressure and swollen extremeties, along with a history of high CRP, if it's not renal related it could be vascular or heart related and really needs addressing by your GP.

It would be great if you could get to London but I realise this may not be possible for you. Another visit with your most recent Rheumy is more feasible and if he was willing to try you on Imuran then why not Plaq?

Hugs,

Lily
 

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Hi Netty

Really can't add much unfortunately as I'm pretty much in the same boat as you... Doctors! if only they understood that we don't want to be ill and try to help us.

I hope you are feeling better real soon and any future appointments are more fruitful. Hope this little :hug: helps.

Mrs M x
 

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Hi Netty, sorry you are feeling so rubbish, hope you are keeping track of all your symptoms and writing it down... I too think you need referral to a rheumatologist who knows something about auto immune probs and will tackle some of your health issues, just ignoring them is not acceptable. I wonder if there is a Rheumy that can be recommended in your part of the world? I know it is a bit expensive to go to London Lupus Centre at London Bridge Hospital, but if your GP won't refer you on the NHS is there anyway you can at least go for the Consultation to get an opinion? It may be that your GP would then run any suggested bloods etc. I think the Consultation is about 200 and if they run basic bloods for auto immune stuff and general bloods its can be tailored to a degree on what your priorities are and how much you have... my basic work up was about 550. You can let them know you are self funding and that there is a limit! I did! I am amazed you are managing to work so much feeling like you do, so you really are pretty determined. Hold on in there and try and formulate a plan... first things first, your journal and find a Rheumy locally that will help you... I wish you well.
Claire X
 

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Hello!
Could you see a different Doc in the same GP practice? Failing that you are perfectly entitled to move to a new GP surgery if there is another in your area.

Before you do that have you just tried asking for a new ANA test, ESR and CRP. Do you have regular kidney function tests? All these tests cost only pennies (sort of!!) and there is absolutely no reason why you should not have them done at your GP surgery.

I know how difficult it is but your GP is there to help you, and he is paid by taxpayers to do so!! Could you take someone with you when you go?

You need some help: you need some medication: you need someone to listen to you.
If you had a suspected broken leg they would not brush you off like this!

All the best of luck!
M
 

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Sorry I meant to add this - which hospital do you go to? I go to Derriford.
Are you a member of the Devon and Cornwall Lupus Group? I have found them very helpful>
M
 

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Nettyunicorn
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133 Posts
Discussion Starter · #9 ·
hi all and thank you so much for your replies!Its really nice to find people who understand!
i willtry to answer some of your questions:

*my gp surgery is annoying!i tend not to see same person twice in a row although my actual GP is head of practise. Feel i should move but wont that mean starting again and can they say no if they feel i'm gonna be a problem?

*All i can say is that my rheumy said he cant try anything else!
* Kidneys are ok on scan and with bloods but staying with them coz of BP. They dont seem othered bout odema. Only bp that they cant control.
* Money is very tight, too tight sometimes! with 3 teenagers its not good.

All in all i know i have to insist they do something, but i'm not confrontational. How doyou change your personality?

Thanks all

Nettyxxx
 

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Pollianna
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Aww netty, am sorry your suffering so much. You need some support dealing with this must be hard with three kids. I too am wondering why you can't go back on the plaq? i got to the london clinic and that's what they gave me and all they plan to give me. i realised today i was given no support or explanation of my diagnosis even at the London Lupus unit. try to get back on the Plaq , feel better soon xxP
 

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Hi Netty,

I realise that it's difficult to stand up for yourself but really if you don't then no-one else will I'm afraid :( I think most of us here started out quite meek and mild when it came to our healthcare, until we got so totally fed up with increasing symptoms, a disrupted lifestyle and it forced us into sticking up for ourselves. After that first time it becomes easier, believe me!

I would go along to see that Rheumy and just discuss your symptoms and how increasingly difficult this is for you and how it's affecting your life, giving specific examples - they seem to understand this better than sweeping statement such as I am tired ;) or I'm in pain ;). I would then bring up the fact that he tried you on Imuran and whilst you realise you can't go back on that would it be feasible to start back on Plaquenil? After all you were on it before and it should have some benefits for your problems, it was not your choice to go off it after all. I don't see how any reasonable physician could refuse this.

strengthening hugs,

Lily
 

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Hi Netty,
Just a word about abdominal bloating with CPAP.
This is a big problem with my prem babies on continuous CPAP.
I'm sure you know that air is blown into the stomach as well as the lungs during the process.
Your doc should give you some advice on dealing with this.

Sorry your treatment seems to be in such a muddle..........find a GP in your practice who is worth his salt and insist on seeing only him as far as poss.

Best of luck
 

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Hi Netty, I am in the same boat as you, and boy do I want to jump overboard! I too live in Devon, and go to Torbay hospital, I have wide ranging symptoms which I feel are not being dealt with. They can tell me what I have not got, but anything else seems too much effort to find out! I have been vitually housebound since last November, as I keep falling over. I have 2 Kids, 10 and 13, and I know what a strain having a mum in bed most of the time does to a family. I was also working until November, but feel as useful as an ashtray on a motorbike now! I know none of this rambling will help you in the slightest, but it is sooooo good to know you are not alone. Hope you get answers soon x
 

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Nettyunicorn
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133 Posts
Discussion Starter · #14 ·
Thank you all again for understanding my problems, guess i just have to get tough and start demanding help instead of putting with so so medical help!

Thanks again!

Nettyxxx
 

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The Other Illinois Tammy
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Netty dear Netty,
You sound like an echo in my head. There are things they can do for the swelling and a fluid pills comes to mind. I am on them and it does help when they work. You also need a good pain pill and to thing about doing some adjustments with work hon. I know I am already there, you can't. Take a step back and read your own post and what would you be advising yourself to do. You need to be firm with the doctors or find new ones. A good doctor would not be telling you to live with it. And Netty hon, you know what my reply to that doctor would be don't you? You live with it cause I have been and I am tired of doing that, I know there are things that can help me if you will just do your job.

You also need to find out if there are other things that your job can do to help with some of the hours like working at home or hour sharing. I know that is not possible in every job so they are just advise for you to look into, if you will a starting point for you. You have to put you and your family first. You should look into filing for the disability in your area and keep fighting it is not an easy thing to get don't take no for an answer.

I do hope you feel better soon and that things start working out for you. I am here if you need me anytime netty. Take care.
 

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Hi Netty,
I used to be shy and not really telling my rhumey what is going on with me.
Then my husband said to me if you don't tell them how you are really feeling he cant help you. Now I tell them like it is.:)

Take care of yourself.
Love,
Lyn
 
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