[justwondering7]

Lab findings are as follow. She's 21 year

Anti-nuclear antibody 1/320
Anti-Smooth muscle: Positive, the rest are negative
Anti-phospholipide: Positive
ESR 24 mm/h
Platelet borders always on the minimum of the range and over half the time lower.
C3: normal
C4: normal but on the minimum
Symptoms: Massive hairloss, it peak with several other symptoms such as joint pains extrem migraines and headaches (she has chronic headache for years).

Plus she has mood swings they become extreme a day or two after the joint pains peak..., then the seizures will appear. They come in wave and then go away when the other symptoms become better.

She is extremly tired all the time, memory problems, neuropsychologic evaluation shows very significant decline in memory and processing speed.

She has a history of skin problems, like Eczema, she once had a rash about 3-4 cm diameter on the face which was diagnosed as atypical eczema. She quite often has some stuff on her skin that come and go.

Is it me, or is it questionable that no one made those links when they had access to all the blood works and reports?

Are the symptoms similar to those on the board?

 

[cath]

HI,

Nice to meet you and what a thoughtful sibling you are:blush:.

You've obviously done your research and read quite a bit. I have to say your suspicions do seem warranted. Just looking at the ARC criteria alone your sister has more than 4 - ANA, Siezures, Low platelets, Antiphospholipid antibodies, mouth ulcers....

Smooth muscle antibodies are sometimes assiciated with autoimmune hepatitis, so this also needs investigating and including/excluding as a diagnosis possibility.

Yes, her rheumatologist should be thinking about the possibility of lupus. Is her familliar with autoimmune diseases? Can your sister or someone (maybe you?) tactfully bring this up with him/her? Maybe it has been considered but not discussed with your sister (after all the right bloods were done). Try to find out why nothing further has been done. Some rheumatologists are more expert in lupus management than others. If her's is not up to speed, your sister needs to seek someone else.

Where does she live?

Diagnosing lupus is typically a slow and frustrating journey, but having its possibility considered is half the battle. Do encourage her to push for it. The right treatment could have a very significant positive impact on her wellbeing.

Keep us updated?

X C X

 

[justwondering7]

Thanks for the reply, Lupus has been considered first, a GP she saw several years ago thought it might be that and refered her to the rhumatologist, who wanted to rule out lupus, they didn't know what to do of her case.

She was recently refered to an epilepsy clinic, the neurologist asked if Lupus was excluded and wants all her reports. They want to admit her there connected on eeg for several days. They told they have access to immunologists (they have also neuroimmunology specialists there), rhumatologists and hematologists too.

 

[justwondering7]

My sister has very severe articulation pains, but visually there is no sign of inflammation, redness or anything. Is this common with those suffering of lupus to have such pains, but no visual trace?

 

[Maia]

It is common to have joint pain in lupus that does not leave a physical sign of redness or inflammation. It is often said the the amount of pain felt appears out of proportion to the way the joints look - especially when you compare SLE joints to rheumatoid arthritis joints.

It is also common to have redness/warmth/swelling too - it can happen either way with lupus. Hope this helps and your sister can finally get some answers and good treatment soon.

 

[justwondering7]

It is common to have joint pain in lupus that does not leave a physical sign of redness or inflammation. It is often said the the amount of pain felt appears out of proportion to the way the joints look - especially when you compare SLE joints to rheumatoid arthritis joints.

It is also common to have redness/warmth/swelling too - it can happen either way with lupus. Hope this helps and your sister can finally get some answers and good treatment soon.

Thanks for the reply, this forum is full of ressources, have found many discussing about their symptoms which are exactly like the same (like gastro transit time too long etc.)

The EEG findings of my sister seems to be shared by those having SLE, particularly those with anti-phospholipid anti-body. Unfortunitly I an not post the link I have less than 15 posts.