Querying my diagnosis? Help Please?

charlielou86

Ok so this is going to invlove a little bit of history.

Ever since i was about 5 I have had a persistent cough from october to march each year, my chest always appears clear on tests and was diagnosed with asthma, but there have always been question marks around this and the dr has never been convinced it is asthma.

Then when I was a teenager about 14/15 I began suffering with convulsions which became quite violent and I was in and out of hospital but it couldnt be explained and was never diagnosed even after a trip to Great Ormond Street. The only abnormality found after loads of tests was a streptoccocal infection. This eventually stopped.

About a year later I was in so much pain that I couldnt even get up the stairs at home; after tests I was diagnosed with rheumatoid arhtritis which has since changed to psoriatic arthritis. I have been medicated for this and whilst it has helped the pain subside I still have lots of fatigue, weakness and pain and the arthritis has remained active. I suffer with depression which i have been receiving treatment for, for about 5/6 years; which I have always believed was due to dealing with the arthritis.

As i am planning a pregnancy I came off the meds in August, since then I have developed a skin condition presumably psoriasis (also on my scalp), had a really bad flare up of my joints including a lot of pain in my lower back. About 6 weeks ago my convulsions started again, only in the evenings once i was resting but at the weekend began in the day to the point that sunday i experienced 50+ convulsions. Since coming off the meds it was also found that I had a vitamin D deficiency.

I say this and people just think I have loads wrong with me but after doing some searches online something kept reappearing - LUPUS????

I get a lot of these symptoms and wonder if maybe this is the condition I have which explains everything above. I am waiting to see a neurologist as after a trip to A&E for the convulsions they dont think its life threatening as all the tests they have done came back clear. Speaking to the rheumatologist and they think that the convulsions and arthritis are not likely to related (so just a huge coincidence).

Getting a bit fed up, on top of all of this I have had a cold for 11 weeks and pain in my chest.

Any suggestions anyone? Do you think Lupus could be a possible explanation for all of this??

dreamdaisy

To be honest I don't think we are the people to ask, it's your GP who needs to discuss this with you. We are knowledgeable when it comes to these diseases and the varieties thereof, and knowledgeable about their treatments etc but what we cannot do - and should not do - is attempt a diagnosis as we are not in any way, shape or form medically qualified. I think I am right in saying that lupus is an auto-immune condition so I think it's best for you to go and see your doctor to ask his opinion - and let us know what he says. I wish you well. DD

charlielou86

Thanks

I just feel like i'm being passed about. GP to specialist to gp etc... just so frustrating!!!

I will see what the neurologist says when i get an appointment through.

http://itsallaboutgettingfromatob.blogspot.com/

julie47

Hi Charlie,
Sorry I can not help either. I just wanted to say, don't look at the internet as it can be quite scary, wait and see what the next specialist says. I know you feel as though you are pushed from pillar to post but hopefully as your notes piece together this next specialist may have an idea what is wrong.
Keep your chin up.....sending a hug ((((((()))))))
love julliepf x

dreamdaisy

Oh I remember that feeling very well, I lost an entire year of possible treatment whilst being flung back and forth between rheumatology and orthopaedics and yes, the frustration is huge at times. Given your history I think arthritis is the more likely culprit but - as I am not a doc - I honestly don't know. I had psoriasis on my scalp when all this malarkey began with me, and a history of eczema and asthma plus year-round rhinitis. Dammed immune systems, who'd flaming well have one? They are more trouble than they are worth. :roll: DD

frogmorton

Hi Charlie

I am so not surprised you feel confused your history is very interesting.....

Rheumatology can look into lupus surely for you easy enough sure there is a blood test for it. In your position l would be applying pressure for that test.

If it's any help my sister, who does have very bad asthma, can have seizures when she is poorly due l believe to lack of oxygen.

You take care

and l woudl be very interested to hear how you get on

Love

Toni xx

CJHunter

Hi, Hope you get some answers soon.

Take Care.xx

charlielou86

Thank you all, yes it is very strange, always been a bit of an odd wonder. Fingers crossed for a quick appointment with the neurologist and some answers. Will give you and update when I have one x
http://itsallaboutgettingfromatob.blogspot.com/

janie68

Hi Charlielou

You must be very frustrated with all this. But I just wanted to say you can have several conditions. i have asthma,epilepsy and RA. These put together can point to lupus as well but I don't have it. Try not to look on the internet, you know you can put 2+2 together and get 12 I'm sure.

You are right to get investigated and hopefully get some answers.

Good luck

Janie

charlielou86

got my neurologist appointment through in the post today for 30th January. So a bit of a wait. another update when i know more.

http://itsallaboutgettingfromatob.blogspot.com/

suzygirl

Hi, I have lupus and reading your post I wondered if it could be causing your problems before I had got to the end and you mentioned it. You could get a dermy to look at and maybe biospy the rash on your scalp which would aid diagnosis.

Have you ever had an ANA test or anti ds-dna test? They are lupus antibodies, your gp can do an ANA test but the other one usually has to be done by a consultant.

It could be coincidence as auto immune conditions are complicated, and obviously I am not a doctor. I would ask them if you have ever had those blood tests, just to rule it out.

All the best for your neuro appt.

kellerman

Please take the advise you've been given and don't look on the internet.

Reminds me of years ago when my Grandad used to diagnose everybody by reading medical books.
The only people that can tell you the problem is a specialist.
The internet can frighten you...so please please just be patient.
May

bubbadog

Hi Charlielou, I just wanted to pass a hug to you for being brave and wanting to do this so you can start a family, and also welcome to the site!
These nothing I can suggest to help you, other than myself if you ever want someone to just talk to. I hope you get some help and answers soon.

charlielou86

Thank you everyone for your kind comments, its nice to know i'm not on my own x