What next?????

[Longlocks]

Diagnosed a month ago. So far X Ray,steroid injection, 4 x blood tests and today I have to have a bone marrow biopsy and last night came home to a letter saying I’ve got to also have a scan. Not on any meds yet. I’m really hoping all these appointments decrease soon I’m self employed and fed up with trying to reschedule all my own appointments. Apart from the practical I’m just a tad worried what they’re looking for 😳😳😳. Sorry rant over I’m glad I’m being looked after but I just wanted to get it off my chest, I’m sure my family and friends are just getting bored with it all 😢

[Happy5]

Hi hope you're not in too much pain meantime?

Remember it well did feel like constant tests, as we're all different with our conditions,

not sure which or why you are having the tests you are.

However being thorough is a good sign, treatment is taylored to our needs.

[oldtimer]

At the beginning it is a nightmare trying to fit in everything and it all takes so much time. But you will, eventually, get to the stage when you wonder if you have been totally forgotten and are fighting to be seen...

[KittyJ]

Yes the early stages after diagnosis can seem an endless amount of tests etc but try to look on it as being thorough and helping to find the best treatment for you. It won’t last forever and hopefully soon you will get some treatment and the tests will decrease to just regular monitoring.

Feel free to rant here, we have all been where you are and will try to support you any way you need. 🤞🏻 for you x

[Stats12]

Bless you pet, it is all a bit overwhelming, at least your are being looked after and it sounds like they are investigating everything... It does get better and when your consultant has all the relevant information he will be able to give you the best treatment.

I was diagnosed in Feb 2017, felt like I was never away from the hospital initially, but now I'm ok ish with my meds MTX, Hydroxychoroquine and folic acid... although I am seeing the Consultant on Friday as the meds seem to be not as effective as they were... we shall see what he suggests..

Chin up, & its ok to rant, we all do it on here now and again.

Sue

xx

[Longlocks in reply to Stats12]

That’s the same combination I’ve been told I will have (my prescription is sitting at the pharmacy) just can’t take any of it yet as I have issues with my blood. Hence all the other tests. It feels a lonely place at the moment and quite nice to rant here without wondering if people think you feel sorry for yourself or are getting on their nerves. Thanks

[Mmrr in reply to Longlocks]

It is a hard slog and patience are needed with RD, the machinery moves very slowly, but all the investigations will hopefully get you the best treatment and that's what matters. Best wishes.

[Longlocks]

That bone marrow biopsy was the MOST horrific and traumatic experience in my life!!! Let me explain, the nurses/doc we’re amazing but the pain was like I’ve never experienced bearing in mind I’ve never given birth or broken bones or anything like that. Apparently I have incredibly strong bones which is why it took an hour instead of 15 minutes. On the plus side it’s unlikely I will ever need a hip replacement and as that runs in my family it’s good news. Hope they can find out what they need to do it’s not a waste of time

[Hidden in reply to Longlocks]

😱😱😱how horrible. Why is it never easy . Let’s hope this is the end of your eternal testing.

[Maloc97]

Its good to let it out in a rant!!! While I am not going through a biopsy (Thankfully), I had a cardic ultrasound yesterday and I am at the moment fitted with a 24hr ECG recorder.

So, yes I understand how overwhelming this diagnosis process is.

For myself, I am glad that they are doing everything they feel I need to be tested for but I can't help but think the various NHS staff (that I do think of as great) don't entirely get the emotional effect the testing can have.

I have been seen by 3 consultants (Gen Med/ Infectious Diseases/ Rheumatology). Each dept nurse does height, weight, & please provide us a urine sample. 16 blood tests (10 + 6), 24hr urine sample. CT scan. The cardic testing I started with an my MRI will now be mid october.

Follow up bloods (6) for a follow up call with the Gen Med consultant next week.

Longlocks, you are perfectly normal to feel frustrated & everything else.

I hope they find you a course of treatment soon!!!

[charisma]

It’s good they are doing everything to find out why your blood tests are showing concerns apart from RA.

I hate the idea of a bone marrow test, and yours in particular with strong bones sounds awful!

You are doing well to keep going each day, especially when self employed.

Here’s hoping your recent test will bring good results. 🙂

[oldtimer]

If you have any specific questions about the bone marrow examination and what it turns up, please ask. I had problems with the Rheumatoid Disease affecting my bone marrow - but I seem to be OK now.

[Leics]

I had to have a bone marrow biopsy because my bloods were also concerning them. It was checked by haematology but turned out to be a immune system problem due to previous RA treatment. At least it came back clear and they managed to eventually start treatment for my RA because I hadn’t had any at that point for 6 years. Our local hospital ensured that entinox was available throughout the procedure which ensured that it was relatively pain free and I had no lasting side effects from the procedure which also took a very long time. I thought it was standard practice these days to use the ‘gas’ why weren’t you offered it I wonder ? I hope your constant appointments lessen off soon and treatment commences for you soon. Feel free to vent anytime though.

[Longlocks in reply to Leics]

Thank you for your reply. I did get entinox eventually and it somewhat helped. I think the whole thing is just such a shock to my mental state as until 2 months ago I’ve been pretty healthy with the most serious illness being Glandular fever when I was 16. All these investigations are because I have very little medical history for them to go on. Anyway I’m sure I will get sorted. It is good to be able to let of steam on here without being judged and with empathetic people commenting. I’m hoping my low Nutophils are just me and nothing sinister xx

[Leics]

Fingers crossed. I too had glandular fever aged 16. Hopefully you’re through the worst rounds of testing and will get some answers soon.