You’re welcome @Aun, I’m just sorry you’re finding it hard to get information.
I’m not a doctor but I live with a different blood cancer to Chronic myelomonocytic leukaemia (CMML) and am lucky to see my haematologist regularly. He reminds me that some blood cancers are called “chronic” because they develop more slowly than acute ones. That BCUK information I shared about Chronic myelomonocytic leukaemia (CMML) will hopefully explain it better.
Maybe your diagnosis is for a chronic illness? I’d say be careful researching online as it’s easy to find inaccurate information. Often it’s just opinions rather than facts. I try reading only medical or blood cancer websites and avoid Dr Google!
But seriously, it’s understandable that you’re feeling devastated. Diagnoses of rare illnesses can make us feel very alone. However, you’ve found others in this forum @Aun who know what you’re experiencing. There are people here who live with Chronic myelomonocytic leukaemia (CMML). Maybe keep looking around the forum to see how well others can be.
I hope you find some local support too @Aun. Perhaps you could find medical advice in another country where your mother tongue is also spoken?
Thinking of you, please let us know how you get on.
I am very happy , Thank you very much for your interest. I will try to consult a specialist as soon as possible, and look for more information. I am trying to access some pages on Facebook, but so far I have not been able to. In general, I am happy with your interest. Thank you.
Hi @Aun Thanks for all your posts and @Duncan has responded so well and also explained why other peoples results are not really of use to you.
Yes, you can definitely have several people with the same results all on different treatments or treatment regimes or on active monitoring, especially in different countries.
So much more is taken into account than just test results.
You have found several different posts and experiences. @Duncan has also given you the Blood Cancer UK link to Chronic myelomonocytic leukaemia (CMML)
I hope this helps you in some way.
Take lots of special care of yourself
Hi all @Erica@ChrissyD@Unclejack@Logsie@Lyndam Can you believe that my lovely husband has had a possible TIA today! Only lasted a few mins. His mouth dropped on one side. So quickly got him to A&E. Was seen quite quickly fortunately. Spent the afternoon there He’s feeling ok now. They’ve prescribed him soluble aspirin & we’re due to go to the TIA clinic next week for further evaluation. I think I’m going to wrap him up in cotton wool! @Unclejack how are you? Am I right in thinking you had a TIA recently too?
Oh @Sisi I know when my husband had a similar TIA what it was like for me, It was really scary and shocked me.
How are you both doing now?
Really look after yourselves.
@Erica Thankyou dear Erica. It all happened so quickly! We were on the bus going off to meet friends for lunch & I suddenly noticed it looked like he was talking out of the corner of his mouth. It was only for a few minutes & then he felt fine. Our friends spent some time in the walk in clinic with us. Not quite the lunch we had planned! But having them there meant it was less scary.
We are doing ok thank you. I’m pampering him even more now! Hope all ok with you ?
@Lyndam Thank you for your message Fortunately it all happened so quickly & he was feeling relatively ok afterwards. All ok at the moment and A&E wasn’t too busy thankfully xx
Oh gosh. So sorry to hear that. What a shock. That must have been very worrying for you both. Good that you had your friends there to support you during the wait and glad to hear it wasn’t too crowded in A and E.
I don’t know if your husband is on any medications already but my experience is that they put people on the full works after a TIA. Statins, blood pressure tablets, low dose aspirin. Make sure you tell them about his Chronic myelomonocytic leukaemia (CMML) and blood test results as his platelet count may be of interest re the TIA and planned treatment? I’m sure @Unclejack can update you on what happened after his suspected TIA.
Hope he is ok now and that you both feel less anxious after the full appointment this week. Sometimes it feels like one darned thing after another, doesn’t it?!
Thanks @ChrissyD Yes. Told them about his Chronic myelomonocytic leukaemia (CMML). He’s already on statins & has been for some years. Managed to get an up to date blood test. Nothing much changed apart from monocytes have gone up. Platelets seemed ok. The ct scan he had today showed a small area that may have shown an old mini stroke. We’ll know more when we go to the TIA clinic next week. Waiting to hear back when that will be. Thanks for virtual hugs He’s doing ok. In fact fast asleep next to me! Will keep you posted.
@Sisi@ChrissyD@Lyndam@Erica
Hi Sisi
Dreadful for your husband and yourself to suffer this on top of Chronic myelomonocytic leukaemia (CMML). I have had two suspected Tia events. The first happened in January 2020 a few weeks before lockdown. I was drinking a cuppa and suddenly I didn’t know what to do with the empty cup! Just couldn’t work it out. My wife searched the kitchen drawers and found a bottle of soluble small aspirins. I took one and thought that was that as the symptoms only lasted a few minutes. My wife was furious I wouldn’t go to hospital to have it checked. I decided the best option was to start some digging on the garden! (Yes I am a complete idiot) As my wife voice hit a crescendo I agreed to go to the hospital A and E. A CT scan was carried out and nothing was detected. However two days later the stroke clinic rang to inform me they wanted to see me right away. The review of my CT had actually shown something odd. A whole load of tests were then carried out. MRI scan, carotid arteries scan, and a couple of heart checks. A small are of what they called infarc was spotted on my brain but they said that was not connected to my recent event and was older.
Anyway statins, blood pressure pills and clopidogril were prescribed plus small aspirin for 4 weeks the other meds for life. Never saw the stroke people again because COVID arrived.
Then last December a much worse Tia hit me.Symptons total confusion unable to communicate totally out of it. In hospital 3 days CT/MRI scan no further damage. Stroke doctor said it was a difficult diagnosis because there was no evidence to go on. She said she was 99 percent sure it was a Tia but there is a type of rare migraine that can have exactly the same symptoms as a Tia. Anyway been fine ever since still on the meds except the blood thinners were withdrawn when I was diagnosed with Chronic myelomonocytic leukaemia (CMML) a while back. Never ignore the symptoms and don’t start gardening as an option to investigation! In my case all the tests suggested there was no evidence other than confusion and pins and needles in my right leg.
BUT the MRI did reveal something had happened earlier that had caused some damage but caused no symptoms.
Wishing you both well unclejack. PS
999 if anymore symptoms. They stopped me driving for 4 weeks.
@Sisi what a shock out of nowhere. I hope your husband is doing ok and of course yourself going through that along side him. Must have been very scary.
Glad that you had friends with you and glad that A&E was quiet. Keep us posted and take good care of each other x
@Sisi
Hi Sisi, what a coincidence that your husband’s ct . revealed a small area of damage as did mine and we both have Chronic myelomonocytic leukaemia (CMML). I wonder if you can have a TIA whilst sleeping. Certainly a massive coincidence.
@Unclejack Thankyou so much for your message & filling me in with your experience. I really appreciate it! And yes, incredible that they also found an old ‘infarct’ ( strange word! ) I wonder when that happened!?
I will pass on the message about no gardening! Also what a thing to happen to you before COVID! Will keep you posted with any update. Hopefully we’ll hear tomorrow when he’ll be seen in the TIA clinic. Annoyingly won’t hear today because of the bank holiday! Hope you’re continuing to improve with your calf and ankle. Thanks again. Best wishes to you xx
@Erica@ChrissyD@Unclejack@Lyndam@Logsie So…quite a bit of an update on my husband. Went back to hospital today for further tests. The MRI he had, actually showed several tiny strokes not TIA’s that happened on Sunday. They’ve also identified that there is ‘furring’ in one of his neck / carotid arteries, which would have caused this. A bit like limescale in a pipe!
So he needs to have a procedure / operation called a ‘carotid endarterectomy’ to clear the artery and help prevent any further strokes. Apparently the dr said he may have been at more risk because of his Chronic myelomonocytic leukaemia (CMML)
The procedure will be done either this week or next week at St George’s hospital. We’re waiting to hear back with more info tomorrow. What a day! All a bit of a shock, thought they’d just prescribe Asprin but I guess at least they’ve found the cause & can do something about it. Best wishes & love to you all xx
Hi @Sisi. Thanks so much for updating us. You’ve had quite a day -again.
Our lovely allotment neighbour had exactly this op a couple of years ago. He’s over 80 but recovered really well and he’s been absolutely fine since, so I hope all goes well for your husband. St George’s is a well-respected hospital ( it’s been on telly a lot - if you watch 24 hours in A and E! ) so he’s in good hands. It’s good that this has been found before anything more serious has happened and can be dealt with so that you don’t have the worry of future strokes hanging over you both.
Hope you hear soon about the planned op.
Thinking of you both.
@Sisi thanks for the update. I was wondering how your husband got on. Gosh, these things hit you so unexpectedly but like Chrissy says you are in the best hands and reassuring that you’re getting it sorted early before a more serious flare up could occur. Hope you’re both in good spirits and sending lots of virtual hugs x
@ChrissyD , @Erica , @Sisi , @Unclejack I’ve been so silly! I’m kicking myself. Today is the day for my husbands appt at Kings College and I only forgot to bring ID with me so they wouldn’t let me on the flight! My husband had his driving license so he got on. We pleaded with them stressing how important it was. I even had a copy of my passport on my phone but computer said no! I cried! Couldn’t believe it. So used to Easyjet flights where you don’t need ID if traveling to UK. So came back home and tried to get on next flight but they couldn’t transfer me, I would have to pay another ticket, then it would be touch and go if I would make it on time so hubby says he’s ok and not to worry.
He’s feeling ok now. They’ve prescribed him soluble aspirin & we’re due to go to the TIA clinic next week for further evaluation. I think I’m going to wrap him up in cotton wool! 
Fortunately it all happened so quickly & he was feeling relatively ok afterwards. All ok at the moment and A&E wasn’t too busy thankfully xx
xx
) so he’s in good hands. It’s good that this has been found before anything more serious has happened and can be dealt with so that you don’t have the worry of future strokes hanging over you both.
