Hospital Visit

[crista1]

I took myself to the hospital A&E yesterday after blood blister developed on head a week ago and the pain still had not gone.. No appointment. Rushed through after triage. Heart racing. Once through the doctor asked if I had taken any painkillers and proceeded with making me feel like a child. He did not know anything about Hughes. ( I recently had a third positive blood test for 'Cardiolipin M' )

The reason I went along to the hospital was for a brain scan, but that didn't happen. So I am back at home, feeling like a band is tied around my head. I have an appointment at my G.P surgery this afternoon.

The one thing the doctor did say as I left was ask for a blood test to check (ESN) levels. Mentioning something about 'Temple lobe Arthritis'.

I am still waiting for my appointment to see someone who specializes in APS.

Not sure what we have to do to get what we need, but I am trying!!

[MaryF Administrator]

Where are you located as we do have list of specialists in the UK or if further afield other members or I can help with info. Mary F x

[crista1 in reply to MaryF]

Hi Mary. I am from Manchester. We spoke over a month ago.

I had asked by G.P to refer to Prof Bruce, a specialist in APS. But a ring and book came through and it couldn't be used for Prof Bruce., it had to be a referral from my doctor. This as not been done yet. I am currently off ill at the moment from work, so I am thinking of contacting Prof Hughes secretary today?

I am worried that I won't be believed. Yesterday at the hospital took my confidence somewhat. My head still doesn't feel right, mainly on the left, where the blister is. This blister as occurred since childhood on/off. And a tightness/headache always occurs when it appears. I have had hospital admissions with my head in the past. They told my parents I had a thin skull?

The last admission two lumber punctures later they still didn't know what was wrong (When 13) I wish 'MRI' scans had been done. I feel they would have found what was wrong way back then. Today I am very upset. I feel it will take something terrible to happen before I will be taken notice of. I don't want to have a stroke like mum at an early age. Why do some medical people just not get it?

[MaryF Administrator in reply to crista1]

Oh yes, sorry, I am as forgetful as everybody else at times for the same reasons! You need to go back to your GP and explain that being referred to the right specialist will save him or her more money in the long term than a referral which will leave your issues not properly addressed due to lack of expertise, visit them having already sent them (secretary) the website for HSF and the specialists list as a separate link. You should be able to sway them by doing this, take somebody with you to fight your corner, or you will be back to square one, unless you consider seeing Professor B privately taking along your recent NHS blood results. Best of luck to you. Mary F x

[crista1 in reply to MaryF]

Thank you Mary.

I have an emergency apt today, but unfortunately my own G.P is on leave for the next 2 weeks I am told, so seeing someone else. Do you think they would refer on to relevant Professor, or would they want to wait for my own G.P to come back off leave?

I shall ask about the referral anyway just in case!!

Best Wishes

Bernie x

[MaryF Administrator in reply to crista1]

I would use the opportunity for an alternative push, list printed out etc. Explain that in stringent times it would be awful to be set to the wrong person rather tna somebody with the expertise, (present list), and explain how much better patients do with Hughes Syndrome if they see on of the few with the expertise and how lucky it is that there is somebody local to you. Explain perhaps how worried you are. Mary F x

[crista1 in reply to MaryF]

Thank you Mary for your help, I shall do this. I'll let you know how I got on. Bernie xx

[MaryF Administrator in reply to crista1]

That's the spirit, polite, firm, clued up and fighting your corner, as you are a patient that does not wish to use what could be a wasteful NHS appointment which will leave you being referred to the right person. You need this doctor to over ride the system for you and book the appointment due to how ill you feel. Mary F x

[crista1 in reply to MaryF]

Hi Mary.

I went to see a doctor at my surgery this afternoon. And she will submit a referral has a matter of urgency to Prof Bruce tomorrow.

Thank you once again.

Bernie x

[MaryF Administrator in reply to crista1]

The congratulations goes to you for fronting it out and sticking to your guns. Mary F x

[crista1 in reply to MaryF]

I will keep you informed as I go along. Hope you and everyone online are keeping well xx

[Manofmendip]

Hi Crista and welcome

As Mary has said, where are you from?

Getting a diagnosis and specialist care is one of the biggest problems that we see on this forum.

Keep in touch and good luck.

Best wishes

Dave x

[crista1]

Hi Dave.

I am from Manchester.

Just had a third positive high for APS.

Looking at contacting Prof Hughes Secretary today?

Do you think this is the right thing to do?

Best Wishes

Bernie x

[tim47]

Hi Christa 1. Well a good number of us seem to be willing to see Prof Hughes privately, myself included. The appointment, without bloods or anything will cost about £200 , give or take. He is very understanding of 'self-funders' and may recommend your own GP does certain bloods. If you can manage to see him, you may have to wait 6 months, I think many would say give it a go.

Best wishes

Tim

[crista1]

Hi Tim.

I have seen a doctor at my surgery this afternoon, who says she will put a referral through to the consultant I wanted at Manchester. I feel this is a start and depending on what is said, I will look at self referring to Prof Hughes at some point. Do you think I should of done this first?

I don't mind paying.

Best wishes and good luck

Bernie