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Discussion Starter · #1 ·
This is my first post here - so thanks for having me here - and I have no idea where to begin. For the last two years I have been/was convinced that I had MS. I have had a progression of symptoms over the last 7 years that really did make me think that it was MS. The Neuro I am seeing said 'no no no' to everything even the list from the MS site (not good for me) He did arrange an MRI which I have been told via the post was clear. My next appointment with him is Dec 22nd.

So why am I here. Basically I posted onto an MS board and was asked by a few people there if I had ever been tested for lupus. I never have and had very little knowledge of what lupus was so I read up. I now 'think' that the cold sores which I have been having on a regular basis up my nose for some years now could just be ulcers. I am now wondering if the little spots on my scalp which I have had for months now and will not heal could also be a lupus symptom. I know, I know, a little knowledge is a dangerous thing, but I also have the butterfly rash. It is not exactley on my face it it starts just before my ears and spreads under my chin. I have had this for three years now it's much worse during the summer and after I have a bath/shower. My GP has tried everything to get rid of this redness and nothing works. My Neuro said it was nothing to do with him - he's a great guy - and my thyroid consultant (I have a multi nodular goitre) said it's not a thyroid related rash (he really is a great guy) As you can see I do have one firm diagnosis that being thyroid disease. I can no longer carry a shopping bag and walking up the stairs leaves my legs feeling as if they have just climbed a mountain.

My GP had my bloods tested yesterday for lupus but I know that this often fails to show up what is needed for a diagnosis. I am also under a heart consultant because I have been having Palpations for months which often leave me unabel to lie down. My lungs have a life form all of their own and I find myself having a sharp intake of breath without my doing so. Basically guys I am a total mess and a desperate total mess at that. It's not as if I dwell on my symptoms (any of them) because I have two autistic sons which means I have to get on with it no matter what I feel like.

thanks for letting me go on.
 

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Hi,

Welcome to the forum. I am really sorry you are unwell and have no idea why.

It is quite true that sometimes lupus and MS can have symptoms in common. In fact lupus can look like a lot of different diseases - it has such a long and complicated lost of possible symptoms:hehe:.

Still, in your situation it is worth considering and investigating. If the ANA comes back positive (I'm guessing this is the test the GP ran?), then you should push for a referal to a rheumatologist. Actually even if it comes back negative a rheumatologist is a good idea, but a negative ANA often means a much more difficult diagnostic journey.

The other thing you should be screened for is antibodies associated with APS. This can also cause the MS type symptoms. A rheumatologist will usually screen automatically for this autoimmune condition in everyone being screened for lupus.

Don't give up. It has taken many of us here a long time to get diagnosed, but eventually it should become clearer.


In case you are wondering where your other post is (which was identical to this one), I've deleted it. It confusing to have the same thing being discussed in two threads, and we are easily confused:wink2:. Don't worry - most people read through all forums, so you will be seen, and I'm sure others will be along to reply to you too.

X C X
 

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Discussion Starter · #3 ·
Thanks Cath

I was not sure where to post to be honest with you. I am used to Autism Forums where you literally only post Hi in the Intro part of the forum - sorry :blush:

I have made a note of the blood tests you have mentioned and when I see my GP for the results of my tests at least I will be able to ask him what he actually tested me for.

I wont give up even though it will be seven years in January since I first seen my GP with some strange symptoms. I do progress and regress with whatever it is but I had some sort of relapse in the middle of July and it's still on-going :sad: I am not usually a moaner but I have felt so awful since July that I am now finding it difficult to pick myself up again.
 

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Hi there

Welcome to the Forum

Here is a link to some information on Hughes Syndrome (otherwise known as Anti Phospholipid Syndrome -APS) which you might find useful.

http://www.hughes-syndrome.org/

Its true that many people suffering from APS have been mis-diagnosed with MS although some of the symptoms you mention could also be Lupus related. I suggest what you do is start compiling a list of symptoms. Leave nothing out even if you think its unrelated. This will be useful in any upcoming referral you might get to a Rheumatologist. Here is a link to the ACR classification of Lupus. Generally speaking four of the 11 indicators must be present for a diagnosis to be reached although there are, more rarer, sero-negative cases of Lupus as well - some of whom are members here.

http://www.rheumatology.org/publications/classification/SLE/sle.asp

Also check out the 'sticky' threads at the top of the Not Diagnosed Yet Forum as there is also a list of 'alternative criteria' which you might find useful to go through.

The other route to consider, is a referral to a dermatologist. Wait until you get your blood results back first though and then decide what the next step is.

We will help all we can so do let us know how you are getting on with the whole process.

Take good care
Joan:rose:
 

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Discussion Starter · #5 ·
Joan thank you so much for the links and the support. I do need help and support for more than one reason. At the risk of sounding like someone who is losing the plot the more I go into lupus the more I am thinking that my 21 year old autistic son could have it to. We have been trying to get to the bottom of why he has had a flu like illness which comes and goes for over two years now. In fact he ticks more boxes than I do. I have yet to mention this to our GP but I am going to. We are a family riddled with auto-immune illness and multi-allergies. My autistic son also has Keratoconus which is a visual impairment and is often brought about because of allergies. I would like to post about my son seperately because I am very worried with my thoughts.
 
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