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Nettyunicorn
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133 Posts
Discussion Starter #1
Hi all not been around for a while hope your all having lots of good days.

My problem is i dont know where to go from here,

I was hoping the dx of severe sleep apnea and treatment was the answer to all my problems but guess what the symptoms have not gone away......

*i have chrinic urticaria and itch all the time,
*being treated for carpal tunnel but hands still hurt like mad and am awaiting nerve conductivity tests. Thing is not just hands, feet do the same and both go very numb.
*Uncontrolled BP last reading 184/107
*constant ear problems, ie fluid and numbness
*lower leg swelling
*Pain just below rib on right side
*fatty liver, raised emzymes
*GI problems
*Sinus problems
*joint and muscle pain/stiffness
*even hurt under arm pits sorry
*terribly tired to the point i need to lie down
*recurring headaches
*restless legs
*chest infections
*tummy pain and loose and urgent bowel movements
*the need to use toilet often and sometimes in an extreme emergency have wee'd myself on occasion
*forgetful, even my childrens names
*grumpy even angry without warning
* tested positive for high inflammation
* low positive ana 1:80
*slight protein in urine

its been years now with a lupus dx one min and taken away the next, not on meds apart from bp meds.
i try to live a normal life, keep working etc etc but getting very low. i see so many dr, but none will commit. could all these problems really be unconnected.

sorry to moan, just venting i suppose.

love Nettyxxxxxxx
 

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Hi Netty,

Oh dear :( I'm sorry to hear that things are still not right for you. I am presuming that the obvious has already been said and tried (i.e. seeing a good lupus rheumy)?

It does seem as if you are going to have to go on fighting for some more answers. I'm wondering if you have considered/tried going the private route and going to the LLC for an initial appointment in order to get a really expert opinion?

If you do indeed have lupus (I can't remember why the dx and then not) then it seems to me very risky to be going on like this with no treatment.

hugs :hug:
Katharine
 

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Nettyunicorn
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133 Posts
Discussion Starter #3
Thank you Katherine that was a quick reply!

Here goes....
Had been suffering pain and stiffness plus other symptoms on off for a few years and assumed had arthritis as in family. Went to GP for meds. Bloods taken and refered to rheumy1, 1st appointment he examined me said mild lupus gave me a few shots, plaquinil and steroid tablets. took a few blood tests.2001
2nd appointment- withdrew dx, gave more shots, took away plaquinil and said i must not go on steroids again.
Symptoms got worse GP carried out more blood tests and inflammation high refered back to Rhuemy. This time i took a list of questions. He refused to answer them and told me i would just have to get on with things as best i could.
Got GP to refer me to new rhuemy, !st appointment, more shots and blood tests, 2nd appoinment blood result low positive ana, high inflammation. suggested trying imuran. bloods taken to ensure i could go on it, all ok started. within 2 weeks very poorly, raised liver emzynes, taken off with " You are what we call, lupus like or heading towards Lupus but there is nothing i can do. I'm sorry i made you poorly!"
Now they just give me shots and pain meds that hurt my tum etc etc.....
nettyxxxxxxxxxxxxxxxxxxx
 

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Um er, sounds like you were very unlucky there with both rheumies!!!

I find it very odd that someone would put you on imuran before even trying plaquenil which is a lot less "heavy" med-wise (referring to 2nd guy here) and then saying nothing more can be done! That is total ...... well you know. I mean, yes, plaquenil takes longer to kick in but that's very "odd".

I would definitely suggest a trip to the LLC if you can make that. A lot of people here have had to do that and have then been able to go on seeing someone via the NHS (though, of course, I'm not aware of all the ins and outs of it).

Katharine
 

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OH MY GOODNESS!!!!!!!! Is there any way you can get a referral to the Lupus clinic in London? It seriously sounds to me like you need a decent rheumy workup. Good Heavens! I thought the first rheumy I saw was a jerk, your experiences make him look good. YIKES.

Seriously, I would see if there is any way you can get seen by a decent doctor who knows what he is looking for. Even if you have to take a train to London and stay overnight, it would be worth it to have some answers.
I wish you well in this.
Sally
 

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Hello Netty, I have heard of other people having their diagnosis withdrawn. You clearly need help and the "treatment" you have had so far does not add up.
Dr. D'Cruz in London treated me, first privately then NHS. His priority was treatment even before the blood tests etc. showed positive. I was really ill.
I had already been told locally it couldn't possibly be Lupus. The London Lupus Centre is very fair, if money is a problem I can assure you they will not do lots of unnecessary testing.
x Lola
 

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Nettyunicorn
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133 Posts
Discussion Starter #7
Thank you all!

hi thank you all for replying, i know so many have had and are having the same problems as me. What makes me mad is that surely with you being able to choose what specialist you see and where, i should be able to get a referal to the lupus clinic in london! but no!!!!!
I suppose i will have to bide my time as money and time is a big issue and the last time i looked it will cost me £600 to see specialist there. let alone rail fare and over night stay! Way outta my budget at mo.
Again thank you as it sure helps that other people know what your moaning about and why!!!
Take care all
nettyxxxxxxxxxxxxxxxxx
 

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Netty, Some of the London Lupus Centre Docs. will not insist on blood tests and are happy to use your NHS ones. That cuts the cost to about £190 consultation. I fully agree it should not be necessary but for me the relief was huge when I knew I just didn't have to waste my breath on local idiot Rheumy!
x Lola

I would advise you to throw yourself on the mercy of the London Lupus Centre and explain how hard it is to get the money. They are used to desperate people.
 

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Nettyunicorn
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133 Posts
Discussion Starter #9
Yes LoLa i agree its fod for thought! Perhaps after next round of specialist visits i will need to rethink about cost and just save to get what i need! I have nerve conductivity tests next sat, so will see what they throw up! If periperal neuropathy is found i will insist they delve deeper into the reason why this is occurring. They seem to have ruled out arthritis. Its such pot luck to the treatment you get. Not fair and not good for anyone.
Keep as well as you can and thank you for the good advice!

Nettyxxxxxxx
 

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Netty, I feel for you being in Devon, travel to London is not ideal for you. I know others from Devon who have to do it. All I can say is that I have never known anyone regret going to London even if they had to pay privately.

What I used to do was belong to a local Credit Union. (All you American girls know all about these), I used to save a little money then I could get a cheap loan which I would use for medical consultations if necessary. They also do a cheap Funeral Plan which is a good option for those of us who are excluded from normal life assurance.

Just a thought, I certainly wouldn't tell you what to do, but this is the way I got through it.
x Lola
 
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