Newly Diagnosed

[PMTW19]

I am a newly diagnosed patient and, fortunately, I have been told that as a result of my bone marrow biopsy I am currently Low Risk. Not too sure what this is all about and I feel somewhat fraudulent in coming onto this forum where so many are in a more serious condition. However, I shall follow with interest my fellow forumeers to learn more about this condition.
Best wishes to all..... Peter

[chris]

Dear Peter

Welcome to the Forum -except that always seems a hard thing to say as it follows that you have had a diagnosis of MDS which is often very confusing and a bit of a shock -since hardly any of us will have heard of it.

I see from your other post that you’ve received our booklet and found it useful. MDS has such a wide range of sub-types and some are more serious than others. You’re welcome to post on the Forum whether you have low-risk or high risk disease or anything in between. Ironically, some people find low-risk disease quite difficult to handle as it can be strange to have been told you have a disease but may need no treatment? Being on”Watch and wait” may feel as though nothing is being done so sometimes we prefer to say you are on Active Monitoring -which feels more positive?!

Others on the Forum say they feel a bit of a fraud as they actually feel fine! So it’s good to hear that that situation can ge a possibility. You would also be welcome to join our Patient Support meetings on Zoom where you will get the chance to chat with a range of people with this disease in common. The meetings are very informal snd friendly. We even laugh quite a lot !

Thanks for posting Peter and hope you find interest and inspiration in the posts.

Take care

Chris
Local Patient Support Ambassador

[PMTW19]

Thanks for your response Chris. Yes, it is quite bewildering to find that you have a rare blood disease - particularly at a time when hospital appointments are conducted over
the phone. I must say that I was quite dumbstruck on receiving my diagnosis and afterwards I began to think of lots of questions that I should have asked. My next appointment is in a couple of weeks and by then I will have written down a list of questions to ask.
My GP originally flagged that I had a blood problem following a routine blood test. After about a year and a half of further blood tests, colonoscopy and ct scans I was referred to a Haematologist. I was subsequently told that my problem was Pancytopaenia. After a period of hesitation , I was persuaded to have a bone marrow biopsy and the results came through to show that my problem was MDS with a very low risk factor. It is only after reading the contributions of the many fellow sufferers on this forum plus the very useful information on the website , that I have come to a better understanding of the condition.
I am an active 86 year old and general wear is probably a significant factor, but I do find that unusual fatigue is my main problem. Other problems, Rashes, occasional dizziness, could be a result of other medication that has been prescribed. I have a lot of questions to raise at my next phone appointment.........! And I won't feel shy about asking for a second opinion if I don't feel satisfied with the answers.

Peter

[chris]

https://mdspatientsupport.org.uk/questi ... -patients/

Dear Peter

What a lot of inappropriate (and uncomfortable!) tests you had to go through to get your diagnosis! Often the way, sadly, as GPs are unfamiliar with rare blood diseases.

I’m glad you are already beginning to formulate the questions for your next appointment. If it helps, the link above is to a Prompt List of possible questions and you might like to check it to see if there’s anything else that you might like to ask? Hope it helps.

Fatigue is probably the commonest symptom of MDS but there are interventions which can help improve it -from drugs which improve your red blood cell production to blood transfusions. So hopefully, you can access something to make you feel less fatigued.

There are also some patient meetings on Zoom coming up. ( I presume you are a member?). Look out for the dates in our e-newsletter coming out this week. Our office manager can help you with any technical issues.

All best wishes

Chris

[chris]

Forgot to say....

If you do seek an additional opinion, there is a list of specialist centres on the website.
Chris