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35 Posts
Discussion Starter · #1 ·
hello all.

i seen my doc today,and i asked him out straight what he thought is going on with me,he said that he was sorry but couldnt offer any explanation other than it being cfs/me.

he said they are completely stumped what to do next other than send me to a dermy about my skin probs.

he asked me what i thought should be done next,i said i didnt know neither,only that i felt quite disturbed to think i might have to live the rest of my life like i am,surely considering i have been like this for 18yrs the most i could expect is to be improving not deteriorating,he couldnt give an explanation other than his apologies that he doesnt know whats wrong with me,he really wants to get to the bottom of it to help and raise my quality of life.

he feels i do not need a repeat test for lupus as i only had one done 18 months ago,i did not make much of that remark,only a thought to myself that bloodwork change constantly,but he did add that all the bloods fo lupus has come back neg and that if something like that was going on it would of prove other.

he looked at the inside of my mouth as the upper lip is discoloured almost like a long thin line a bruised color,he dont think it is much to worry about but will keep an eye on it to see if it improves or dissapears,he asked if i drank red wine,which i dont drink any alcohol as i am very allergic to the stuff,although at times i wish i wasnt,i could do with being able to go blow my mind out from the pain at times.

i am glad i am going to see the dermy,when he told me this you would of thought somebody has just given me a thousands pounds,hopefully i will get some end to my skin probs,that would be priceless,and maybe some answers as i also have hardened skin on my thumb not much but it has got a lot larger in that area,so fingers crossed.

so i really hope i might start to get some answers,although i probably wont as i havnt in 18yrs,so maybe that is what i have is cfs/ sucks,but worst of all they just cant really help you with it.

sorry i felt i needed to rant a bit,my skin is driving me insane,if they can help with that prob i am sure i would feel so much better overall,anyway we will see.

love and best wishes jo8

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570 Posts

Honey I think you need to get yourself another doc! I presume the 'test' for lupus he is talking about is an ANA test? Alot can happen over 18 months. I had my first ANA test in Nov 2005 which was negative, I then had 3 or 4 additional tests until I tested positive in June 2006. In between times my Dermatologist noticed slight changes in my other blood tests like my compliment and rheumatoid factor and felt that I warranted continued testing. She was the only doc that felt I had Lupus and that I would eventually have a positive ANA test. Thankfully she looked further than the rash on my face.

If I were you I'd push for a whole new set of bloods - it has been known that lab conditions can affect the outcome of the results. Is this doc a rheumatologist or your regular general practitioner? Hopefully the Dermatologist will look into your symptoms a bit more.

I'm so sorry that you came out feeling deflated, goodness knows I would have too.

Lots'a'luv, :hug:

Pam xxx

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35 Posts
Discussion Starter · #3 ·
thankyou pam,i do agree with everything you have said,i must admit i felt the same,when he said there was no need for more tests.

this comment came from my g.p,the rhumy i was under discharged me with the understanding if my doc feels i need to see her again,then she would be happy to see me again,it was the rhumy who redx the m.e as this was dx 18yrs ago but in the 18yrs i have still had to prove the severity of my illness.

even though i have to use a wheelchair now to go out,i just dont understand how i got like this,i really thought that if it was m.e i have, i would of seen some sort of improvement in sx.

in all the 18yrs i have been unwell i still worked has social lifes,just paced myself out more,but now if i have a visitor to the house after an hour of talking my throat is hoarsy and i am unable to talk any more,i cant wear shoes as i react to them,then the other day i had to take my bra of as it brought me out in hives.

i cant stand for to long as i feel so week in my legs,i cant always feel my feet,i fall and trip a lot.

i told my doc i have so much pain from head-toe ,with swelling in my arm joints an knees ,mouth ulcers which he found discoloration,throat and nasl passge severly inflamed.

the occupational therapist i have has put rails in to help,also a bed elevetor to help get me out in the mornings with my hubby,as my back is so sore and stiff,i need help with everything even bathing my hubby has given up work to try and some stuff sorted out with me.

with all the other probs raynauds,oseoarthritis cevical spondylsis ashma,i tell you list goes on every is like flu day,chronic rhinitis,which i thought i had colds for 6yrs.

6yrs to dx chronic rhinitis what are they doing?

i feel that seeing the dermy will open up some answers,providing it is not the same one i had 6yrs ago,that dermy asked me if i had a dog/cat i replied yes,so he checked me for that allergy which i didnt prove positive for it,so told i have the itchy scratch condition put me antihistamines told me to take the for 2yrs you will be fine,you wont have anymore probs,then threw me out lol.

that was about10yrs now i think,and i am still have skin probs but this time on a larger scale,cant go out in sun,cant go to tesco with their lightin makes me welt and be sick,and now to top it all cant wear shoes or clothes.

perhaps if i go to my next appointment,i should go naked then they might sit up and think either ill or get the shrinks in `lol`

all this is just a fraction off all wahts going on,

anyway thanks for letting me get all this bad out of me.

love and beshes jo8.

thankyou pam u know yur stuff,i will keep you informed of my next journey,

again many thanx pamxxx

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10,191 Posts

I agree with Pam, I think you need to go see some new doctors. I don't think I would waste anymore time with who you are seeing now. He said he is stumped.

Hopefully this dermy can help get to the bottom of your problems.

I feel so bad for you. It is disappointing when you leave a doctor's office after a conversation like you had.

Do you have an appointment with the dermy? Please let us know how you are doing.
Take care,:hug::hug:

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425 Posts
I agree with the others, you need other docs opinions, I have had lupus tests be negative then positive about 8 months later. Besides if the doc is stumped time to seek out more opinions you shouldn't have to live with the lack of information, let alone without a doctor who you have faith in and who has your best interests at heart. I am sorry you have to go through such pain and uncertainty, I hope things work out better for you really soon.:hug: :flower2: Karly

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6,939 Posts
Hi Joanne,

Yep, me too, I agree with the others. You defintiely need to become a "nuisance" and find other doctors.

I can't believe that you aren't being referred back to a rheumy (as well as the dermy) with the symptoms you have.

Also, as to the ANA. It is rare, but some people do get diagnosis for lupus (or another auto-immune disease) without having positive ANA. I am one of those who got diagnosed through a skin biopsy (as my ANA was always negative) and then later other things (still not ANA) showed up in my bloods.

I initially had the same problem that my doc was saying "it's not lupus" because my ANA was negative but thankfully she did keep listening to me enough (this was the rheumy) to refer me to a dermatologist. Hopefully now she will be more open to patients who may not have the positive ANA. She has been wonderful treatmet wise since diagnosis.

Basically you just have to keep going until you get answers and I'd say the first step is to get angry and change docs including possible your GP who could be more forceful in finding solutions too. Hopefully the dermy will be good and it might provide some solutions.


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35 Posts
Discussion Starter · #7 ·
thankyou to you all so sooo much for your support.

this site has become a blessing/safe haven for me.

you are all absolutely right with what you are saying,i have been a member of this site for quite a while now,and most days i read your posts,i can relate to most of them at some point over the duration of this illness.

i know deep down in my heart that i have some sort of immune prob whether that be lupus or some other prob.

to be honest i am quite devasted about it all as after 18yrs i am rediculously worse than better,in which i would of thought i had some sort of comfort sorted out by now.

i know that if it is cfs/me,and doesnt come to no more,than this will probably be the best it is going to get.

my only hope can be to make more awareness for future poor soles who might contract this horrible illness,which still most people dont believe it exist,in fact i just dont think it is this illness,any illness that dont prove any thing by bloods ect:.

to those of you who replied,it sounds a very similar pattern to which road i am going down.

when i first mentioned lupus to any doc at the beginning (about 2yrs ago) their replies were you dont itch with lupus,i thought you probably do whether it is to do with reactions from meds or severe allergies which can run along side many illnesses,i know it is not a requirement for the critia,but wake up i cant go out in the sun or any lighting without welting severly and feeling like i have sun stroke all the time.

the only time i have had any relief from sx has been when they put me on steroids for chest probs,i felt great and free,but they wont treat me constantly with them as i dont have an existing illness through bloods.

i forgot to mention that my bloods have started to go out of normal range,mostly being red blood cells,first of all they kept coming back i am a heavy drinker,which they did prove other through a gamma test(neg)so then they decided to check for lupus,as this can be the case sometimes,now they are coming back low anemia,and another tesr i think it had something to do wish histamine levels elevated (iga test)so what are they on.

sorry i have had to get all tis out 18yrs of it i think.

sorry peeps,just dont know what corner to turn next.

love to all of you,once again a big THANKYOU FOR YOUR SUPPORT.


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484 Posts
Hi Jo, boy, you sure have a lot on your plate right now.
I am going to my Dermy at 1;00 this afternoon, and it is for my nails, and the thickening of the skin. But remember, although we all end up needing a dermy sooner or later, he
is a specialist in skin, just skin, we aren't, that's why he get's the big bucks. But there is no question that you need
a referral to see a new Rheumy, a.s.a.p. Have you been checked out for Fibro? Keep posting:wink2:

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35 Posts
Discussion Starter · #9 ·
hello everyone.

i am starting to feel a bit better, still have nasty headaches,behind the eyes.

halfpint when i seen the rhumy i assume she checked for fibro,she pressed a bit around neck,but i was dx with cervical spondylosis,after xrays proved this.

i was dx with fibro many years ago,but nothing ever been said or mentioned about it,almost like it dont exist on my notes,but i know i definately have that,and i do believe this is where most of my pain come from,as all my pressure points hurt whether lying down/sitting,just hurts and stings,i cannot sleep to long on one side,i do often wake up with lots of bruises.especially the thigh area is the most pain.

as far as i know the rhumy did not dx this at that point,as when i had a letter from her,there was no mention of fibro,she dx cfs/me,raynaulds,osteoarthritis,
cervical sponylosis,although in her letter she did state i was showing signs of autoimmune probs,but after bloods were done and they were neg,she never mentioned it again and dx the above.

then she wrote me a letter that she felt their was not much more she could do,as she refered me to o.p/o.t.but if my doc felt i needed to see her she would be happy for me to go back.

there was many condradictions in everything she said,with how she was treating/keeping an eye on me,but this wasnt the case,so back to the start again,i am no better of than 18yrs ago really,just a few more dx to my list.

anyway thanx all of you for helping me,i wish you all as well as can be,i will keep you all posted.

love and best wishes jo8
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