Yet another appointment!

[Greenmil3]

Getting a little nervous as I normally have an annual check with the lupus clinic at Guys and have no problem with that as they are wonderful. But having seen a registrar 3 months ago she got annoyed with my local hospital so ordered an MRI at guys and said she would refer me to haematology at guys as they have a specific clinic for cerebral APS and Paul the neurologist (the one on the list of experts) and would try to get my original MRI that my local neurologist did about 3 years ago. Nothing for either of those clinics. So I am thinking as I’m seeing professor DCruz this time what are they going to say or do? Probably worrying about nothing but I feel like I’m deteriorating and wondering what else might be going on! Rant and worry over but just needed to tell someone and you lot are great.

Thanks

[daisyd]

You are going to see some of the best Doctors Paul Holmes is lovely, I haven't seen Professor DCruz but their really good reports of him,

I feel really lucky that I am now cared for by Guys and St Thomas's and no longer at my local Hospital, who I blame for a lot of my problems

Really pleased for you, good luck

[Greenmil3 in reply to daisyd]

Thanks daisyd they couldn’t believe it at my last appointment when I said I was managing myself with no input from any healthcare and was balancing my own warfarin and INR! So I was overjoyed when they said they would take everything on! And yes professor D’Cruz is great it was he who confirmed my original diagnosis not had the chance to meet Professor Hughes. Just concerned it’s another appointment so short a time after the last one

[KellyInTexas Administrator]

Stellar team!

Im sure you will have your list of questions very well organized.

Don’t forget to mention your concern about your blurry vision you mentioned in your last post- it might have something to be with neurology. Now that Professor Paul Holmes is involved, he might want you to make sure the optic nerves are being checked - to make sure they are not showing signs of optic nerve atrophy. ( I’m having a lot of trouble with this and it falls in the specialty of neuro- Opthomology.)

All the best for a productive appointment.

Kelly

[Greenmil3 in reply to KellyInTexas]

Kelly thanks for the advice as I my memory is so bad I had forgotten to make a list.

Thanks so much you are wonderful

[KellyInTexas Administrator in reply to Greenmil3]

“It takes a village.”

Thank you for your kind words... often I need to set a few days aside to gather my thoughts.

As Dr Hughes says in his website, maybe approach it organ by organ.

Under brain - classify your questions under the heading :

1. Neurological:

A. Blurry vision- optic nerve atrophy?

B. Tingling sensations- why?

*Possible CIPD? Peripheral Neuropathy?

C. Migraines? Increased frequency? Different medication just for that? Sumatriptans?

D. MRI results? Changes? Discuss

2. Hematology:

A. Stability of INR

B. Add any anti platelet/ ( I assume you may already be on.) Discussion/ review

C. Any questions may be punted to Hematologist- that’s fine- make note on your list of that.

3. Rheumatology:

A. Any benefit from adding on an immunosuppression drug like azathioprine or mycofenolate? Something else?

B. Would you consider my particular case progressive despite best effort and effectvec INR target range control for the most part? If the answer is yes, then would it be time to discuss the above question regarding immunosuppression? This is Paul Holmes expertise as a rule.

C. Constitutional:

Overall organs in general. Tummy, heart, kidneys. Vascular system.

This is just a basic guideline to help you formulate a starting place.

[Greenmil3 in reply to KellyInTexas]

Kelly I had started a list but nothing as comprehensive as that as I don’t want to look like going on and on. But I think your approach is better than my list I’ve made so I’m going to work out a way to print it off and add all my symptoms in the right place. You have been such a help to me since I joined I’ll buy you a beer next time your over! 😀

[KellyInTexas Administrator in reply to Greenmil3]

You are on!

[MaryF Administrator in reply to KellyInTexas]

This is an excellent list! I do always my stuff out in bullet points, and add to it or take bits away according to how I am before each appointment, and of course fully listed if somebody new, or an emergency! MaryF

[Greenmil3 in reply to MaryF]

Sure is should maybe be a standard for all of us before all our different appointments

[lynzy]

Hi, I’m under their care also, and have been since 2012. Dr Karen Breen is my haematologist (all Consultants in this clinic are experts with aps, that’s my opinion), and Dr Paul Holmes is my neurologist. Karens team took over my Inr dosing nearly 7 years ago and I’ve never had another clot, says it all. Which clinic and which clinician does your letter state you’re attending? May be worth a call to dr d’cruz secretary, I’m sure they’ll help you. Don’t forget to detail the blurry vision and tell Paul, your haematologist also, between them they’ll work it out, they all communicate quite freely if there’s a problem crossover.

Pm me if you want

[Greenmil3 in reply to lynzy]

Lynzy thanks for that still waiting on the referrals to come through! Will chase them up when I’m there.

[HollyHeski Administrator]

Whatever they say at your appointment you will be looked after. As they arranged the MRI it is quite normal to follow with an appointment quickly. You will only go back to yearly appointments when you are stable and you and them are not concerned about anything.

Start making your list of your concerns, your health record etc so you can make the most of your appointment.

Do let us know how you get on.

[Greenmil3 in reply to HollyHeski]

HollyHeski thanks for your advice I will post an update on 1st November after I have seen him.