Splinter mark?

[Stereolover]

My recent splinter mark - because of APS I was told.

[Stereolover]

I have 2 on that nail

[Lure2]

I have had small ones like that. Gone now.

[MaryF Administrator]

I had them on three nails, during one pregnancy, but not since then... great to photograph these sort of things for our medical files. MaryF

[Stereolover in reply to MaryF]

It’s because I still get these that I wonder if Clopidogrel is enough for thinning my blood. Hopefully I’ll find out in September.

[Lure2 in reply to Stereolover]

Who are you going to see in September? Prof D`Cruz? I hope it is a Specialist of autoimmun illnesses as I think you need more aggressive blood-treatment for your APS. We have discussed this before. Are you in a wheelchair today? You say you have not been walking for 14 years.

[MaryF Administrator in reply to Stereolover]

Yes, do check with your main GP/Consultant and great you are photographing this, as we all know that when we go and see the doctor, things immediately disappear just before the appointment!!!!!! MaryF

[Stereolover]

Yes I have multiple sclerosis and I can’t stand or walk. My GP surgery have refused to refer me back to Prof D’Cruz so I’m seeing a rheumatologist in my local hospital in September. Hopefully he/she will then get me referred because he’s the only doctor I can trust. They had no problem referring me to St. Thomas’ hospital back in 2007 when I had to stay for 5 days though!

I’m actually thinking of contacting Prof D’Cruz’s secretary to ask how much a private consultation would cost. Nothing is ever straightforward is it?

[Lure2 in reply to Stereolover]

I am so sorry but I remember you said you could not walk earlier.

When I reread your question I read that the Neurolgist you saw meant: " I must give you an MS diagnose as the eyes can not be affected by APS". In your case APS and MS may well have been mixed-up which is said to be rather usual as it is not so common to have both illnesses. It is possible of course.

I do wish you could see a Specialist who would take responsibility of your health and give you the correct treatment. Is your 19 year old boy ok?

[Stereolover in reply to Lure2]

Thank you for your kind words. Yes my neurologist said I’ve been diagnosed with MS only because APS doesn’t affect eye problems. I did a search as soon as I came home from seeing her and no shock really to read that she’s wrong.

Strange that you mentioned my son because I asked him last night if he gets headaches and he said he sometimes does. He’s not one to complain and he would take paracetamol and not mention it. I told him that I’m going to get his blood tested because it can be hereditary.

He was fine with that. I just know I’m going to have a battle with the whole scenario.

I will see Prof D’Cruz regardless. Looking back I think my mum had it and she died because of a blood clot. When I was having my blood tests they were 2-3 weeks in between whereas now they’re 3 months? I really don’t understand why it’s such a huge gap. There must be a reason I suppose.

[Lure2]

Perhaps you could change your GP and tell a new GP about your two diagnoses. He would understand and remit you back to Prof D`Cruz. The Prof would understand and help you.

I have two grownup girls and they are tested negative so far.

As you know antibodies can come and go and some people can have symptoms but no antibodies and vice versa. Also a "trigger" is needed in some cases. It is a strange illness in many aspects.

I will be thinking of you and please tell us how it goes for you.

[Stereolover in reply to Lure2]

Thank you so much. My partner has tried to change us all to a different surgery without any luck whatsoever. They aren’t taking on any new patients. It’s such a shame because our surgery was excellent until a year or so ago. The best GP I’ve ever had left. He was lovely and did all he could to help me. He’s the only doctor who has seen and heard me cry. Within that time I saw the GP who replaced him just once because my blood tests showed my kidney(s) weren’t as they should have been. He left and another took his place but I never saw him - he left so quickly. Now it’s locums apparently.

I might be worrying over nothing because often it’s the not knowing that’s worse.

I’m so glad your daughters results are negative and I hope they stay that way. How often do they get checked?

I’ll definitely keep you updated.

[Lure2 in reply to Stereolover]

I know they have done it once. I let them decide that for themselves as they know my symptoms. It is their responsibility as they are grown up now. I guess I will hear from them if they test positive.

In Sweden we can change GPs when it is necessary. I thought it was like that in England also. Hope you will get the help you need from a competent APS-Specialist. It is a real fight for so many. My GP has nothing to do with my APS as that is the responsibility for my Specialists at the hospital. He is there to help and also with other matters like usual infections etc.

[Stereolover in reply to Lure2]

My GP at the time hadn’t even heard of Hughes & sent me for the wrong blood tests. She’s no longer my GP!

I feel that there’s a lot about APS that I’m unaware of and for the first time I’m worried.

The NHS is still a wonderful thing but sadly it’s declining steadily.

An option I think I’ll try is requesting the GP I mentioned above to phone me. She’s the only original one left so I (might) have a chance albeit very small that she’ll refer me straight back to Prof D’Cruz. I’ll do that tomorrow. Doctor practices aren’t how they used to be unfortunately.

I’m tempted to speak to Prof D’Cruz’s secretary before I speak to the GP. It’ll give me a head start perhaps.