I’ve been feeling not quite right for a while now. My mum has Rheumatoid Arthritis so i figured i probably have this too and didn’t want to be constantly complaining about my aches and pains so ignored things for longer than i should have.
About 6 months ago a sharp pain i kept having in my side side started to become more frequent, and turned into more of a constant dull ache… so i went to see a Gynacologist (i have a history of a condition that causes pains and stops periods) he didnt do any bloods but told me i was fine. I later saw a Gastroenterologist. By this time the night sweats had started (i guessed this could be early menopause) but she requested a small bowel MRI (7 week wait for the scan and 2 week wait for results). She also ordered a colonoscopy, before going in I told her that i’m certain its my spleen and not my colon. Fast forward 9 weeks and the MRI results showed a very enlarged spleen and multiple enlarged abdominal lymph nodes.
Over the last 6 months I’ve complained to the gp about:
- night sweats
- repeated fevers and constantly losing my voice
- sudden heavy periods (despite history of no periods)
I have also had but not mentioned:
- back / bone pain
- frequent urination
- low energy levels (i have a 1.5 year old and 3 year old so figured i’m supposed to be this tired)
When the MRI results came in the doctor noted that my last blood tests (over a year ago) were not actually normal as my GP had txt me to say. I’m waiting to see a Hematologist on Wednesday but definitely beginning to worry about what they are going to say. I had a blood test last week but i’m not certain a full blood count was done, i think the gastroenterologist just wanted to rule out other conditions that could cause an enlarged spleen. Just posting to vent really! Anyone else waited this long for a blood test?
I went down the private route as i couldn’t get an appointment with my GP but its been a long and slow process.
Hi @Shim, welcome to our community and thank you so much for posting about your experiences. It sounds as though you’ve been through a lot, and have been having to cope with a number of troublesome symptoms. I’m sorry that it’s been a long and slow process for you. May I ask how you’re doing with it all?
It’s so natural to worry ahead of your haematology appointment. Medical appointments can be incredibly nerve-wracking, especially if you’re waiting to hear about test results, too. I just wondered if you’d find it helpful to talk things over with our Support Team? Please don’t hesitate to reach out to us on 0808 2080 888 or firstname.lastname@example.org.
I thought I’d also mention, just in case it’s useful, that some people find it helpful to escalate to the GP surgery Practice Manager if they’re finding it hard to get an appointment or having any other issues with their care.
I hope you get some answers soon.
Hi @Shim a great big welcome to our forum it sounds as if you have a lot of different symptoms which must have been really worrying you.
I think it is more about ruling out existing conditions and predispositions at this stage than often testing for them and that is the lengthy process you are going through.
I find this is a never ending process of waiting on appointments, tests and results and that waiting is horrible and does not help.
Please try and look after yourself and be kind to yourself.
We are here if you need us.
Saw the Haematologist earlier today and he suspects hogkin lymphoma. Arranging a pet scan in the next 2 weeks and has asked to see me again next week once he has had the chance to discuss with the MDT and will have the results of further blood tests that they did today.
Currently in bed with another fever of 39 and due to get a flight ony own with both my kids to visit my parents tomorrow for the bank holiday weekend. Luckily flight had been delayed 5 hours so i have a little more time to recover.
Thank you both so much for your replies xx
Hi @Shim getting away to your parents might be a good diversion and break for you all, providing you are well enough.
Have you tested for Covid?
Really look after yourself and please keep posting especially after you get your results.
Hello there @Shim
Just checking to see how you are feeling as I read your post relaying your high temperature? I hope that you managed to recover enough to spend some time with your family?
Please do get in touch if you need any support.
Hi @Davidaw welcome, and if you do not mind me saying so your post reads a bit like a medical directory.
I just wonders how this relates to you and how you are?
Take lots of care
Thanks for all your lovely replies. I made it away and it was really lovely, actually felt like i was just warm from the good weather and not actually unwell. Was lovely to see friends and family and have a few swims in the sea. My temperature is still there (but has been on and off for almost 9 weeks now) but all in all im feeling better. Just tired.
Got a call as soon as i landed earlier saying there has been a PET scan cancellation tomorrow so ill be having one at 11am. Should have the results in aproximately 5 days and can work towards a proper diagnosis from there hopefully. Im seeing the haematologist on friday morning too so he might have some further results for me by then. Its a horrible waiting game but feel like they have really increased the pace since getting my MRI results which is a big relief. With a bit of luck ill have a call next week to say everything is fine
Never had a PET scan before but i doubt theyll give anything away on the day. Will keep you posted! X
Thanks for the update @Shim I am so, so glad that you made it away and it seems to have done you a world of good although you are still awaiting results and answers.
Yes, it is really horrible waiting.
Please do keep updating us and keep looking after yourself
I think going on holiday was a really good idea and really hope that your batteries have recharged a little so that you can face the PET scan and the waiting for results. I hope your haematology appointment is helpful and that you get a diagnosis soon.
Had the PET scan results and all looked really positive although they want me to have another in 8 weeks to be on the safe side as a few areas did light up. They think this is most likely due to a severe infection and have put me on a long course of 2 different types of antibiotics. Although every infection they’ve tested for has come back negative. Currently in bed battling a fever, again…I seem to have developed pneumonia this week which is unfortunate. Day 5 of antibiotics today and no change so far. Hoping to see some improvements in the next few days but still not overly optimistic that the diagnosis is correct as im clearly not well. They asked me to call up if im still feverish by tuesday next week so they can run a few more tests. Another waiting game! Xx
@Shim it sounds like you’ve really been through it these past few weeks! Glad to hear the PET scan results were positive, and also that they’re repeating it in 8 weeks. Really hope the antibiotics do the trick. Have you made your healthcare team aware of the suspected pneumonia? Do make sure you’re keeping them updated. We’ve got everything crossed you start to feel better soon! If you want to chat anything through, do give us a call on 0808 2080 888. Alice
Really sorry to hear that you are unwell again.
Hopefully, the antibiotics will start to kick in but do seek help if you start to feel worse.
Oh @Shim it really is an emotional rollercoaster, first a positive PET scan and that you will be monitored in 8 weeks time, then the next thing is that you are in bed battling another fever and pneumonia.
Yes, another emotional and medical waiting game, please do let us know how you are are getting on and be ever and sending you healing vibes xx
I’m due to get the follow up PET CTscan results on Wednesday. Since the last PET CT (8 weeks ago) I’ve only had 5 days fever free! I know i’m clearly not well but would be nice to hopefully get some answers. With 2 very young children some improved energy levels would be much appreciated.
Hope you are all doing well. Will keep you posted on the results
Morning, @Shim, thank you for updating us. It sounds as though it’s been an understandably difficult time for you and we appreciate it’s not easy waiting for scan results, too. We are here for you and yes please do let us know how you get on. If you’d like any support from our Support Team, please don’t hesitate to let us know (Blood cancer information and support by phone and email | Blood Cancer UK).
Hi @Shim will be thinking of you and yes, please do let us know how you get on.
Have you got support with your children?
Good luck with the PET scan @Shim