[Ocean1]

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?

Background:
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

 

[Maia]

It's not the "typical" presentation of lupus - if there is such a thing! Prototypical would be joint pain, fatigue, rash (facial or body usually sun sensitive), fevers, low blood counts (like white blood cells or anemia), etc. However, you do have several symptoms that could be related to something autoimmune in nature, so it's certainly worth investigating.

Obviously something is going on that needs to be attended to... have you been to see any specialists yet that can help such as a rheumatologist? There are a variety of autoimmune disorders, and endocrine disorders that should be looked into I would think....

If you should get a copy of your blood test results, you can see what all has been tested for and see if they have already looked into lupus/autoimmune diseases/endocrine disorders. Best wishes for you on a return to health and an answer to your symptoms.

 

[LolaLola]

Helo, You are right Cornwall is lovely. We have holidayed at Par Sands, St. Austell a few times.
While what you say is not typical of SLE you do share a number of symptoms with my Daughter who,like me,is diagnosed with this.
Definitely start a Diary of symptoms and past history. Sometimes this helps put it all together,
x Lola

 

[mysharonna]

Hi,
Just curious if you've been tested for lyme disease? Is it possible you were bitten by a tick on your camping trip? It does cause joint/muscle inflammation and pain and night sweats. Just another possibility to look into if nothing else.

Hope you get some answers soon.
Sharon

 

[raggedyann1]

Bex,

Has your GP discussed sending you to another specialist? There are some immunologists who are not just allergy doctors and are trained in connective tissue diseases. Of course there are rheumatologists who specialize in connective tissue diseases. I live in the USA so I can't really give you direction on who are the good specialists in your area.

Let us know what you find out.

Take care,
Karen

 

[runnergirl]

Bex,

This is just a stab in the dark...I had an exchange student from Germany with a story very similar to yours, they tested her for everything. Look up Diabetes Insipidus and see if that sounds like what you are going through. Hers started around the age of 15 and it took them almost a year to figure out what was going on.

I know nothing about Lyme disease but have heard that in many cases it can mimick autoimmune diseases and that some people walk around for years with it not knowing whats wrong with them and the doc can't seem to figure it out. Good Luck on your quest, let us know how you're doing.

 

[elsavill]

bex,


I am no expert but i do know that the cramping and the thirstiness and the craving of the salt ALL point towards ur dehydration (sorry not spelled right). So for some reason or an other u keep getting dehydrated.
I know those symptoms because when i started dialysis for my failing kidney which is from my lupus. I was told that when they pull the fluid off my body I could feel these things and that was because too much fluid was pulled off during the dialysis.
Hope I was able to help u understand some of the symptoms that u are having.:worried: :worried:

 

[Ocean1]

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

 

[Maia]

High blood calcium can indicate many different things. You can do a quick google search to look into that. One possibility would be hyperparathyroidism - a blood test can check this hormone's levels.

The high hematocrit can often indicate dehydration (which you have excessive thirst so this correlates to that symptom I'm sure).

You must have your doctors quite puzzled - I hope something gets sorted out for you soon.

 

[Ocean1]

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
xxx

 

[halfpintfl]

Hi Bex, Boy, your symptoms are all over the place, aren't they? If it is an autoimmune disease, you would see a Rhuemy, and if it is lupus, you would see a Rhuemy. I think your GP has put you thru the ringer already. Have your GP give you a referral to be seen by a Rheumy, I would certainly think that he would be more capable of narrowing down the field for you. I wish you the best, and let us know.

 

[Ocean1]

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

 

[Lily]

Hi Bex,

Yes the C3 & C4 can be low in Lupus, but not in everyone with Lupus. It's a very individual thing our blood results. There is no one blood test to diagnose Lupus, it's diagnosed on a combination of blood abnormalities and meeting criteria for the disease. These criteria are posted at the top of this forum, if you have any then it's a good idea to jot them down and inform your GP. Some of them you may not think important enough to mention but along with other symptoms they can help a doctor sort it all out

I guess they have done the normal first screening test the ANA? That would be the first test they would run on most suspected cases of autoimmune disease, so I would find out if it's been done and what your results were.

Eosonophils are more likely to be high in allergic and autoimmune diseases.
I did look up one site and it said a low reading can point to a problem with overproducing cortisol in the body or alcoholic intoxication :hehe:

It's very common for us to have an increase in symptoms before our period, I know myself I had worse joint and muscle pain, disabling fatigue etc. and then felt a little better once I started. That seems to be the case with a lot of Rheumatic diseases for some reason.

love
Lily

 

[Ocean1]

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

 

[Maia]

Wish more progress had been made for you... Just a few suggestions on your leg cramps: increase potassium in your diet and possibly calcium. It's worth a try at least!

As for low blood sugar levels - you may have reactive hypoglycemia. The best thing to do for this problem is to NOT eat simple sugars. Eat protein, fat & complex carbohydrates like fiber rich whole wheat bread (instead of white bread). My blood sugar used to crash following eating sugar if consumed as a snack outside of a meal. Treatment involves eating small amounts of protein/fat/complex carbs more frequently through the day.

 

[LolaLola]

Dear Bex,
Pacing yourself is a good help. when my Son was very ill (not Lupus but another rheumy condition) he was told not even to think of it as like climbing steps, more like half steps each time. Make sure what energy youhave goes on what you want it to go on, downsize where you can. I know it is a ridiculous thing to say that to someone your age, but you will be much better if you are sensible now.
x Lola

 

[Ocean1]

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

 

[MelissaLJ]

Hi there,

I just wanted to say that I am sorry you are suffering as you are, and at this stage unsure of what is going on.. I wish you lots of luck in being diagnosed soon and on the road to recovery, or at least to feel somewhat "normal" . Hang in there, and the best of luck & health xox

 

[LolaLola]

Dear Bex,
First thing, don't cut yourself off from us or feel you don't fit here.
Secondly, I am sure you have heard by now that the bloods can take quite a time to change.In the meanwhile it is quite possible to be treated for "Lupus like illness" if your Docs are enlightened enough. Or if you really want to know come down to London , privately if necessary and see the real experts.
My bloods did not change for ages, yet I was still really ill and needed to start treatment.
x Lola

 

[Ocean1]

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