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120 Posts
Discussion Starter · #1 ·
Hi my names bex im 22 and live in lovely Cornwall, Uk.

Iv been ill for around 8 months and my GP is struggling with giving me a diagnosis :( at the moment she has given me the diagnosis of Chronic fatigue, but she said she has a niggling feeling that theres some other process going on. Iv been doing some research myself to see if i can find anything and i came across this site, which is very informative and wondered whether i could possibly have lupus?

I am 22 and was fit/healthy with no medical problems except migraines, raynauds disease.
When i was 15 i had an illness which made me nauseous constantly with diarrhea and occasional vomiting, this lasted about 8 months and eventually was put down to IBS , however i did recover and went on to lead a normal active life.

July 2007 - had finished uni (May), I went on a short camping trip, whilst travelling i suddenly felt sick, thought it was travelling so took a travel pill, and felt a bit better although still felt wobbly, all of a sudden i had excessive thirst and started producing lots of urine. This nauseous feeling lasted all wknd and i also started fainting after short walks/standing up so we cut the trip short and came home, i was then v.ill at home, nauseous, fainting when standing, weak, wobbly, dizzy, light headed, fever, no appetite, muscle twitches etc after a week my GP admitted me to hosp, i had blood tests all came back ok apart from i was dehydrated and high white cell count, so i was put on 3 drips and sent home the next day, feeling bit better, twitches had gone and felt bit hungry, this only lasted for a few days, then i was ill again, i started having all symptoms mentioned before for about 5hrs a day and then feeling not too bad again it was v.confusing!
My gp sent me for test for addisons disease it came back ok and thyroid ok too?!?!
Anyway since then ive got better and ive cut out wheat from my diet, but for about 2hours on and off during the day i get really faint again and weak/wobbly, cant move my legs, twitches in my neck, my eyes go really sore and feel v spaced out, im also craving salt and really thirsty?!? I also have cramps in my legs, a very sore wrist, Night sweats and a dull ache in my back,its really weird, i cant seem to find out what sets me off? i still cant walk for more than around 10-15mins and have been signed off work till March, but im really confused as to whats going on?!? could it be chronic fatigue or lupus? I sleep ok, have around 12hrs a night usually uninterupted. iv also lost weight and suffer from being freezing all the time! also i am very pale and have started to become anxious a lot which i wasnt before, im mainly anxious of going out cause im scared im going to faint/be ill! grrrr im so confused! any help greatly appreciated!
My Gp has just done another battery of blood tests as iv now started bruising and devolping a vascolitic rash on my arm, i am waiting for the results.
I also went to see a renal specialist today, and apparently kidney blood tests are ok and theres no blood in my urine today? so they dont need to see me again.

Sorry for such a long post, but thought you guys might be able to help me! Thanks for reading! I hope everyones ok.

thanks again! Bex x x x :)

120 Posts
Discussion Starter · #8 ·
Hey, Thankyou all so much for your opinions i really appriciate it! :)
I have some blood results back that say:

High Red blood cells, Heamatacrit
high blood protiens and calcium

My Gp is on holiday at the moment so another doc looked at these results and said theyre ok because there not dangerously high, but i'll get my gp to take a proper look when she gets back.

Diabetes Insipidus i have looked at, but i dont have all the symptoms, i dont need the toilet lots at night which is a major symptom and i do sometimes produce concentrated urine so this points out that my kidneys do respond to ADH, but thanks for the in-put i'll definatly ask me gp more about it when shes back.

I agree with you elsavill that i do seem dehydrated and this would make sense as to why i felt better after being in hospital with 3 drips, it re-hydrated me, so maybe i do have diabetes insipidus or kidney problems?!?
However the renal doc i saw said my kidney function tests all came back normal, so he didnt need to see me again!!?

Lyme disease, this also sould fit my symptoms so thanks for the advice i'll again ask my gp about it when she returns, I also want to ask her about Lupus and if she has tested me for it or not, luckily my gp is great and really helpful, she just cant seem to figure out whats wrong shes always apoligising for not knowing whats going on.

Thankyou again for all your support, I really want to get to the bottom of this as i really dont think i just have Chronic fatigue, which i have been diagnosed with, and i really want to get better asap!!
thanks again, and sorry if i waffle on! :)
bex x x x

120 Posts
Discussion Starter · #10 ·
hi thanks for the reply :)
I had a parathormone test few months ago due to high calcium, it came back normal :(
Its strange that my calcium is high as i eat hardly any dairy products!?! and dont take any supplements, guess ts just another thing for the docs to work out!
thanks again, any help/opinions are appreciated :)

120 Posts
Discussion Starter · #12 ·
hi, thanks again for all your replies,
i havent been able to see my gp since my last post as shes still away, but i did get some more bloods back:
C3 - 1.22g/L
C4 - 0.28g/L
I was told these levels are both normal, i know that these tests do have something to do with lupus, i dont know exactly what, but can you still have lupus if these tests are normal?
Also apparently i have a slightly low eosinophil count?!?

feeling really bad the last few days, thinks this is down to being a week before my period, i seem to feel much worse around 1-2 weeks before my period and then when it starts seem to pick up a bit?!? is this normal for lupus or auto-immune diseases?

thanks again,
Bex xx

120 Posts
Discussion Starter · #14 ·
hi everyone,
just a quick update, so im still not diagnosed with anything but Chronic fatigue syndrome, this is really getting to me now, i really want to start and get better and back to my normal self but with no diagnosis i have no idea on what to do :( My gp has made me an appointment with an occupational therapist as she feels i am still doing to much and not resting enough even though i really dont do anything during the day except wash, dress, sit and eat (so bored!) she says that i do to much and this is why im not getting better so the Occupational therapist will help me with something called 'pacing' which im quite looking forward to as anything i'll try anything if it makes me better :)
Really struggling with legs cramps at night over the last wk, Gp offered me quinnine but said that because i have a sensitive stomach (cant even take parcetomol etc without getting stomach cramps, diarrehoa etc!) that i might experience bad side effects so i gave them a miss and have just tried to drink loads and massage my legs with calming oil before bed, although this hasnt seemed to be working unfortunatly :(
Also keep getting a dull ache/stich type feeling in my left kidney area that comes on and off throughout the day, which is very annoying
My friend gave me her spare blood sugar monitor to use as she thinks i have low blood sugar and guess what! everytime ive tested my self its been between 3-4 which is low apparently, even though i eat loads of sugar as i crave salt and sugar like mad! I have been tested for diabetes and it came back negative so i dont know whats going on. anyone here get low blood sugar?
thanks for reading and sorry for waffling on and on, any help greatly appreciated! thanks Bex x x x

120 Posts
Discussion Starter · #17 ·
Hello again, Another quick update: :)
Got copies of my blood results today, any ideas/help on whats going on would be great :wink2:

protein - high
albumin - high
calcium - high (corrected calcium - normal)
alkaline phosphptase -Normal

C Reactive protein - 0.4mg/L (doesnt say if this is normal or not?!)
Haemoglobin - normal
white cells - normal
Eosoniphil -low
platelet - high
RBC - high
haematocrit - high
MCV - normal
MCH - normal
MHCH - normal
Urea - normal
creatinine - normal
C3 -1.22 - normal
C4 -0.28 - normal
GFR - more than 60 - Normal (but some risk factors present?!)
ALT- normal
Billirubin - normal
Protein Electrophoresis - Normal
IgG -normal
IgA -normal
IgM -normal

ANCA - Negative
ANA -Negative
Antimitochondrial autoantibody -Negative
Anti-smooth muscle auto-antibody -Negative

Urine tests -
1st. Blood present, white cells present
2nd. White cells present

So Lupus is ruled out, which im glad and sad about :blush: im glad i dont have it but sad i still dont know whats going on :worried:
I do have a very good GP though who has been very thourough with all those bloods so, i guess i'll just have to accept No diagnosis of anything at the moment, except Chronic Fatigue :sad: Its so hard when you feel so ill, but nothing can be found i feel like a fraud :worried: oh well im just gonna have to get on with it and hope an answer comes soon.
thanks for all your advice, even though it looks like i may not have lupus, all of your friendly advice does really help so thanks :)

120 Posts
Discussion Starter · #20 ·
Hi thanks for your replies :) cheers me up to know that im not going crazy! (well maybe slightly crazy :) )

MelissaLJ - Thankyou for your well wishes!, I have read some of your posts and it seems that we are in the similar postion of limbo land, hope you get a diagnosis soon, best wishes xxx

Lola - Thankyou so much for your reassurance, with the blood tests, i have heard it can take a while for bloods to show anything, its just so frustrating that docs these days seem to rely on just bloods not symptoms :( How long did it take for your bloods to show anything?
I would love to go to London to see some experts But unfortunatly im skint as im unable to work and i would'nt be able to afford travelling to London nevermind the doctors fees :( I could sell my car but im a bit reluctant to as its my only sense of freedom at the moment and if i sold it and then went to London and still got no diagnosis i would be in a mess! Thanks for the advice though!, Do you know how much it costs to go private and see the specialists in London and would i need a referral? Thanks for your advice and making me feel welcome here :) Take care xx

Bex x x

120 Posts
Discussion Starter · #21 ·
Hi again :)

Bit of an update, so for the last 2 weeks ive got some new symptoms :worried:
iv had increasing weakness in both of my legs down into my little toes, that is aggravated by touch and movement sometimes painful/burning and still got awful cramps on and off in my legs, also both my arms from the elbow down into my little and ring finger are very weak and tingly, my little an ring fingers on both hands are curled in toward my palm, so off i went to gp again, and she says theres something wrong with my ulna nerve and also the nerves in my legs and so has referred me to a neurologist (17th April!), I was wondering if anyone else has experienced these symptoms? :rolleyes:
Also i seem to have a red/flused rash that feels warm over my nose and cheeks and sometimes ears, this only seems to appear in the evening, although it may be there slightly during the day but as i have many freckles on my face it is hard to see, although a friend did comment on how tanned my face looked (and no unfortunatly i havent been on holiday or been in the sun! :rolleyes: ) I was wondering if this could be a butterfly rash? or would this be present all the time and not just in the evening?
Apart from these new symptoms, my dizzy/faint spells seem to have become a little less common and intense which is great! :)
thanks for reading, i hope you are all well, thanks again
bex x x x x:wink2:

120 Posts
Discussion Starter · #25 ·
Hello everyone :)
Yes im back again, so still no progress on the diagnosis front :rolleyes: and im still not well :worried:
Ive been keeping a diary over the last few months and have found out the following, i seem to have symptoms in a cycle eg

1.Pain in back, breathless, Leg cramps, Hot sweats
2. Very weak muscles, blotchy rash on hands and red flushed face,
3. Dizziness, feeling spaced out, muscle aches, pains in wrists, sore/burning eyes, all over body twitches/jerks,
4. Sores in mouth and nose, back pain, sore glands, extreme thirst

As well as this i still often feel faint/light headed for periods throughout the day which i really hate! :( and also have other symptoms that come and go randomly

I have also looked at the alternative criteria and fit some of them -Migraines, Raynauds, growing pains, reactions to insect bites, family history of auto-immune conditions, pre-menstrual exaceberations,

I also have been really bad again the last few days and couldnt work out why, but looking at my diary i remembered that about a week ago it was very hot and sunny and i sun-bathed in the garden and got a little sun burn, could this have caused me to be set back again?

So ive decided im gonna go and see my GP again and ask her for a referral to the London Private Lupus Hospital as even though my bloods came back negative i feel that it would be worth seeing the experts in london to see what they think. My question is how do you think i should approach my GP about the referral letter, shes been really good with me so far and i want to keep her on my side and i dont want her to feel that im under-mining her as she says that the negative blood tests confirm i DONT have Lupus. Do you think i should take a copy of the alternative criteria (st thomas) with me?
Also do you think that the docs at the Private Lupus centre will see me even though my bloods are negative? Thing is im not exactly rolling in money at the moment and dont want to waste money on going all the way to london if there is a strong possibility its not lupus. :sad:
Sorry ive waffled on for sooooo long im just fed up with feeling so rubbish and being labelled as Chronic fatigue syndrome, i just want to work on getting better asap. Thankyou for reading this i really do appreciate it and look forward to your comments and help, (ps big thanks to LolaLola who i pm'd i'll reply to your msg later, thanks for all your help ;) )
Thanks Bex x x
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