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Discussion Starter · #1 ·
first let me just say thank you for the happy birthday that i received by pm
sorry it took so long to say thanks but i dont visit the site often and i keep forgetting how to start a new thread, in fact i desperately wanted to post after my last visit to st thomas in sept but couldnt work it out
anyway
wnt to st thomas in sept and told that subsequent bloods suggest i dont have aps as previously told,and that no need to see me again but might need to see a neuro to check for poss distonic reactions
saw neuro but he didnt pay much attantion to the thing that i had been reffered for which is when my arm and hand twist and lock accompanied by pain and pins and needles
he did however listen to a very long list of all the things going on since 2004 and he said he thinks i have cfs and narcolepsy
i have been tested for narcolepsy twice and feel like im going round in circles
had local res meeting at last at old gps and cant be bothered to take that any further even though not happy with outcome
these are the thingsthat some specialists say i have but then it always gets changed later
me , fibro, aps, sjorgens, thoracic outlet syndrome, narcolepsy, distonia
as far as the gps are concerned, every time they get a letter saying it is not what they previosly thought, their additude is
thats good you dont have that so you are ok
it is very tiring keep going to gp and whinging so mostly i dont bother
at the moment i am going to appeal to lea as they tuned down request for assesment of sen for son with aspergers.
this is long proccess with lots of paperwork and i dont have access to printer and sometimes i cant type due to what were being called distonic reactions but now have no name as neuro did not comment on them one way or other and says he doesnt need to see me again
cannot hand write at all as as soon as i try hand goes into spasm
eventually got some dla at appeal but dont feel got correct award
nothing for mobility and only lower rate care
so back to no diagnosis and no enegy to try to persue one, and still dont think any one who sees me at an appt appreciates that back at home i am often completely unable to carry out even simple tasks
sorry to have gone on for so long but i have been wanting to get it off my chest
have written to dr d cruz in nov but swore that would be the last time i tried to write a letter by hand as i went into spasm very badly very painfull and brought on fatigue big time
have left a couple of messages on lupus nurse phone too
she says i should grt tested for ms but neuro thinks no need
 

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It's so awful being on the diagnostic merry-go-round - it sounds like that's what's happening to you. Sometimes not having any answers is the most difficult thing to deal with. Especially when there are no medications that are prescribed to help...

Add onto that a very full plate with your child and the stress really mounts up. Good luck with all the disability issues and take care of yourself. (((hugs)))
 

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Discussion Starter · #3 ·
medication

thanks
meds currently taking

baclofen, for spasms. aspirin to thin blood. high strentgh co codomol for pain and a gel to rub on joints. mebeverine for ibs. have artificial tears.
have been taken off narcolepsy med recently as i had a lot of probs with it.
take also omeprazole for reflux.
these are all on my repeat, but i buy imugran from the chemist if i get a migraine.
have noticed from my time her that quite a few of you take medication for fatigue, and this is what i am currently asking to have something for , since i stopped the narcolepsy med, but dr says no as recent letter says not lupus.
when i was first put on aspirin the brain fog cleared but is back big time and memory loss and unable to think of words very bad.
also swelling. left ankle left cheek and both eyes swell up.
would like something to take swelling down.
 

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Hi Donna, I just don't know what to say, except that I am so very sorry for the situation that you are in and the fact that you even have to go thru it. It sounds like they are saying: "Neuro.", no, it's "Rheumy.".and back and forth. Do you have complete confidence in these dr.'s? No blood test can eliminate Lupus. Maybe you could get a second opinion? You just should not be going thru this, and not this long. Let us know.
 

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Dear Donna Two organisiations who used to help a lot with SEN appeals were IPSEA and Encompass. I don't know if they still exist but you could try googling them.

Clearly there is something the matter. Could you possibly afford to see a good private Physio? I found that a great help before I was properly diagnosed. Gave me a lot more insight into my body and also backed up that something was wrong, and gave report for DLA.

I am surprised that you have been pretty much "written off" not what I would expect from Tommies.
x Lola

PS If you want your phone messages answered Scott Landers is the appropriate Manager to speak to. My own feeling is that we often wait too long or get no response to phone messages. Just my experience.
 

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Discussion Starter · #6 ·
good advise

thanks lola lola,
allready knew of ipsea, but not encompass.
got help lodging appeal from national autistic soc.
have now been granted legal aid and am using a solicitor that was recommended by the nas.
sounds as though you have some experience of children with sen.
thanks for name of manager , i did get a reply to my first message , but had to leave another a few days later. although no reply yet i think they get very busy.[the lupus nurses]
glad i got up now, had gone to bed at ten , but woke needing pain killers and gel and thoght i may as well go on computer now am up.
definate link to stress and symtoms, as school called me in this pm after an incident in the playground and i am feeling quite poorly at this moment.
 

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Yes, I have been as far as Tribunal, also (when I was fitter) gatecrashed Dept. for Education in London handing out flyers to draw attention to my Son's awful difficulties.
It doesn't last forever, he is now managing to be a Professional Magician and Entertainer.
I really do sympathise with you. You have stuff happening on all fronts.
x Lola
 
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