[joanne8]

hello everyone,hope you are all ok.

i have my appointment through for the dermy,i am so glad as itching/welting srill not settling,for the 10th march,how cool is that not very long to wait.

i really hope i can get some peace and answers from this appointment.

please could any of you advise me on what i need to push for with this visit.

any suggestions most appreciated.

many thanx jo8x

 

[Maia]

I would push for answers regarding: (1) possible causes for this and what sort of tests could identify what it is and (2) symptomatic treatment for it until a cause can be found.

Can you repost a summary of the symptoms and any preceding factors - this would help others with suggestions as well as myself.

Recently I've gotten chilblains again - my hands and feet are quite bad the last 3 days. I have no idea why this started now after much colder days this winter but the itching can really drive a person quite mad. You have much empathy coming from me right now!

 

[joanne8]

hi maia.

i have been ill for 18yrs,dx with m.e. cervical spondylosis, raynauds,severe ashma,with pleuric probs, aches/pain,muscle weakness,neurological probs,eyes unequal,(pupil),flu-like illnesses,chronic rhinitis/sinus,severe itching all over,and many more probs.

i have seen all the relevant specialists over the yrs with no success,including a dermy,about 6yrs ago who said i had the itch/scratch syndrome,basically threw me out put me on antihistamines,said taking them for 2yrs i will be ok.

well 6yrs later i am in a right mess,if i go out in sun,i get so ill,that my skin looks like i have fell in a bush of stinging nettles,rashed/welted all over,i kept thinking i had sun stroke,as i would feel so unwell.

but this has progressed to all year round with endless probs,if i try and take a new meds i react,with severe reactions which are getting more serious,so i am dead scared about taking any meds,in fact it has got so bad i am getting so scared of living,i am on constant antihistamines(high dose)to try and controll it but with no success.

and what i thought was suffering with colds or year round,it turns out to be chronic rhinitis/allergies.

my skin has changed color,i look more darker with lots of red tones especially on face across bridge of nose/cheeks,it has started to look like a butterfly rash,which i have suffered with raised areas on face that dont itch,i have small spots of hardening skin on left hand which is slowly getting bigger(showed doc nothing to worry about)and inside my lip i have a bruised like appearence on inner top lip(showed doc nothing to worry about but will keep an eye on it).

docs are completely lossed as what is wrong other than it being purely just m.e..

blood test have been in range up to the last year or so,but nothing of importance,high raised blood cells mostly saying i drink to much alcohol when in fact i dont touch it as very allergic to the stuff,now they have been comming back low anemia,so all in all very confused about it all.

i have been sent to the rhumy to put me on immunetheraphy to try and controll the allergies as they dont want me to go on suppressants yet,which i agree with what they are saying.

there is so much more going on,this is just the tip of the iceburg,i just want some answers,mostly with the skin as it drives me insane/makes me very unwell.

any ideas mostly welcomed.

many,many thanks jo8

 

[Maia]

Have they done any skin biopsies and what did they show? You may want to ask for this to be done, and at this point you may want to ask if it could be a form of skin lupus causing part of your problems given the sun sensitivity. Take photos to the appt of any past skin issues (if you have them).

How frustrating for you - interestingly I've also had chronic rhinitis diagnosed - went on for a year and then stopped when I got on the right antibiotic (apparently) but it's started up again now. It was terribly frustrating having that for that length of time with no answers and no help. Good luck at your appointment.

Does sunscreen help your skin sypmtoms at all? Something to discuss with the doctor as well.

 

[joanne8]

hi maia.

thankyou for getting back to me,no i have never had any biopsies done for skin,the dermy 6yrs ago wasnt interested in anything i had to say.

what i am afraid of is if i need to ask for biopsies for skin to see if it is any lupus-like illnesses,as i know they dont like you undermining them.

but in another sense i want to kick there butts,to get to the bottom of it,i do know one thing though i will not be fogged of with it is nothing,i will definately stand my ground,for them to take notice,as at the end of the day they are not living with it day in/out.

all the other specialists i have seen neuro,rhumy,have not looked at me as a whole,although the dermy did feel something autoimmune is going on but cause bloods dont back it up they wont do nothing.

so i am hopeful with this appointment as from what i have read on this site a lot of you seemed to of gone down a similar route as i am,with skin biopsies being the way to prove you are ill.

if this does prove to be the case i have a few words with some medical profession about ignoring my wingies,to make me feel i am losing my mind.

does this sound like an autoimmune prob,with especially my skin?i know it can be many other things,but i feel i relate more with persons with lupus than anyone i know with m.e.

thanks again love and best wishes jo8

 

[Katharine]

Hi Joanne,

As one of those given a final diagnosis through a skin biopsy, I can say that what was important for me was having a photo of some of the rashes etc. The dermy I saw was very very young and I should think quite inexperienced but she sat up and took notice of the photos and made sure all the right tests were ordered.

I think that with all docs staying humble is usually best but there's no harm in some hints and useful info being pushed their way in an oh so terribly innocent way

best of luck with that appointment. Do tell us how it goes!!

Katharine

 

[joanne8]

hi katherine,

thanks for your post,unfortunately i have no photos,as i never thought to take any as,i never put any of these probs down to anything,only recently i have put them all together.

but i have been doing research and i really believe more is going on with me,i just dont want to be one who ends getting seriously sick before thay take notice,if this makes any sense.

thankyou for all your support,i will definatly post with outcome as it might help others in this situation,

love and best wishes jo8