[PatGParticipant]

Good morning everyone, Well the diagnosois is in and even though there are quite a few more tests to undergo to pinpoint exactly which organs are involved, I am feeling a bit more settled in myself and can at least see the path that must be followed. Treatment seems to be pretty much the same as for MM and will be VDT if my heart is involved (it does appear to be, but need more tests). Anyway lovely people, can I stay on here as there does not seem to be a awful lot out there for just AL? You are such a supportive, friendly group, I would hate to loose you. xx

[MicheleParticipant]

Morning Pat

I won't pretend to know what AL is at the moment but shall go off and have a read about it.

Thank goodness you know what it is now and that treatment can start.

Hope things continue to slot into place now and that you can share your experiences with us.

Take Care
Michele 🙂

[tomParticipant]

Good Evening Pat

And my vote is of course you can stay 😀 you opened the Group door you made yourself known an I for one Like that 😎 so pull up your comfy chair and let me and folk like me what "Just AL" is all about.

I wish you a trouble free journey with AL (note to self go check it out)

Tom "Onwards and Upwards" xx

[MicheleParticipant]

Hi again Pat

I've now had a look at what AL is and can see why you want to stay on this forum. It sounds very similar and so is the treatment for it. Seems to affect the organs rather than bones though, particularly the heart, liver and pancreas.

Good job they did all those tests on you to pinpoint the AL and that they've probably caught it early.

Speak again soon….
Michele x

[PatGParticipant]

Thanks Michele/Tom. Yes it is like MM and so is the treatment. Nasties in the bone marrow produce proteins which attach to and impair the function of various organs. Until I go to Royal Free and have this special scan they are not sure exactly which organs are affected, but so far it seems to be the kidneys and the heart and possibly the spleen. There seems to be a little activity on this forum under Related Conditions but I would prefer to stay 'mainstream' as it were.
I go to see the nephrologist today to get complete results from the kidney biopsy and have a spinal MRI this afternoon for the vertebral fracture. Apparently this is due to Oesteporosis and not AL, but has to be fixed because of the back pain. Doc has also put me on a course of vitB12 injections and vitD and calcium tabs to strengthen the bones as my levels were very low. Not starting treament yet until I have the heart MRI and the special scan at the Royal Free. I think then it is tailored to where it is and the amount of damage done to the organs. I have to take the information in little bites or it all gets a bit much:-/
Anyway, overall much better. Girding my loins etc. (not a pretty sight I must say!) and setting my stall out for the journey.
Thank you for support and kind wishes. Friends who join your journey lighten your load, and for that I cannot thank you enough. xx

[tomParticipant]

Hi Pat

Your more than welcome and I hope all goes well today and things are soon sorted

Keep well

Tom "Onwards and Upwards" x

[VickiParticipant]

Pat

You stick here and we will learn about AL and you can learn about mm…..shame not to share 🙂

Vicki and Colin x

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