Initial symptoms of MDS

Please post here your experiences of MDS as a patient, carer, family or friend

Moderator: Steering Committee

Post Reply

Have you had these symptoms as part of your MDS?

Yes
1
7%
No
2
14%
A few
11
79%
 
Total votes: 14
chris
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Initial symptoms of MDS

Post by chris » 20 Jan 2020 18:59

Just wanted to write about my odd collection of symptoms which I had in 2008, a year before I was diagnosed with MDS. It has always bugged me that a range of well-qualified medical experts had never heard of these symptoms in relation to MDS so I had always been told that the symptoms were probably due to "something else". Not having a diagnosis for a very severe illness which eventually disappeared without treatment was very hard to live with - especially the overwhelming fear that something "sinister" had been missed or that it would re-surface. Well, after only 2 years and 8 months of researching, I have finally come up with an answer which absolutely fits my illness and I am so relieved. I wanted to share it on this website because MDS is rare, my particular type of MDS is also rare,the symptoms I had are quite rare and I just wanted anybody else who had had the same symptoms know the answer to save them fretting away as I have!

My symptoms were as follows:

*Pain in left shoulder
*Overwhelming fatigue
*Swollen abdomen and oedema (swelling) of thighs and ankles, following weight gain of 6lbs over 2 days
*Night sweats
*Fluid on both lungs (clear and straw-coloured)
*Breathlessness
*Enlarged liver and spleen
*Raised C reactive protein in blood
*Raised white cell and monocyte counts
*Constant pain in back, shoulders, limbs
*Insomnia
*Nausea and loss of appetite
*Weight loss - nearly 1 stone

I have now turned up a paper (Source doi: 10.4065/81.4.553 Mayo Clinic Proceedings April 2006 vol. 81 no. 4 553-563) which lists all of the above as initial symptoms of CMML (my type of MDS). In other words, this was the MDS "kicking off" not symptoms of another illness which preceded the discovery of the MDS.

I would be really interested to know if anybody else has had similar symptoms before their MDS was diagnosed as they are not classic symptoms of MDS which is usually related to anaemia, infection through low white cells and bruising/ bleeding re low platelets.

I have tried to set up a poll facility to make this easier but not sure if it will work. So post reply if you can.

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
BCEX14
Posts: 6
Joined: 19 Aug 2019 10:04
Contact:

Re: Initial symptoms of MDS

Post by BCEX14 » 21 Jan 2020 12:31

Hi Chris
Thanks so much for your response yesterday, I had read your posts and thought it would be really useful for us to be in touch. Your positive attitude gives us such a lift and it's wonderful to know we're not alone. My husband (also Chris!) isn't really keen on joining forums etc although he listens with interest when I read bits out to him. He tends to deal with things in his own way, which is mainly avoiding the subject. We obviously talk about his illness together but otherwise he's not a man that likes to discuss things with others, not even friends or family. I do worry that he can't open up sometimes. I personally have found the support of my friends invaluable, and I'm already appreciating being able to talk to others in the same boat on this forum.
Anyway, your initial symptoms are really intriguing, and Chris's are as follows;
Having been fit as a fiddle all his life, in 2015 Chris felt generally unwell for many months - aches and pains ( especially in shoulder), repeated sore throats, numerous infections following very minor injuries such as an insect bite and a dog scratch requiring antibiotics, extreme fatigue, frequent loose bowels. Over the course of 12 months he lost nearly a stone and a half in weight. Countless blood tests were done, and it was during one of these that the GP remarked there was "something unusual" about Chris's red blood cells so referred him to local haematologist.
The haematologist arranged or an endoscopy to be performed in 2016, the result of which was totally normal. There was some muttering about the possible need for a bone marrow biopsy, but strangely by this time Chris was feeling better in himself and had managed to regain some weight, so it was agreed that his blood would be simply tested every 3 months.
In Feb 2019 he contracted a virus which we thought at first was flu but after a few days having been completely struck down by this and incapacitated he developed excruciating pain in his left shoulder and left side of abdomen. Numerous hospital visits/admissions followed, with his blood being tested for literally every disease known to man, MRi's and ultrasound scans. It was discovered that his spleen was enlarged, and still they kept saying " your red blood cells aren't right, they're very small and pale".
Back to the haematologist we go, who arranges further endoscopy - once again, nothing abnormal discovered.
By this time Chris has recovered from the virus but the haematologist wanted to perform the bone marrow biopsy.
Roll forwards to August 2019 when CMML was diagnosed, much to our shock.
Currently he feels quite tired and does occasionally get ache in his left shoulder and side but other than that feels ok and still able to work as a railway bridges examiner.
Last blood tests revealed white cells 4.5, neutrophils 1.7, monocytes 1.2. Not really sure what any of that means but they told him his biochemistry is normal.
Specialist at Bournemouth has been very thorough. She explained that Chris's CMML is myodysplasic as he presents with some of the symptoms but not others. Following her own subsequent bone marrow testing she told us at last visit that she was now able to give us a much more accurate prognosis if we wanted to know, but Chris has chosen no. (So I feel a bit in the dark now, not knowing if we should do things sooner rather than later).
We are back to see her on 6th Feb as she has taken further scan of his abdomen to check spleen enlargement.
How are you?
Kind regards
Bronwen
chris
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Initial symptoms of MDS

Post by chris » 21 Jan 2020 22:31

Hi Bronwen

I think I might have confused the issue by "bumping" this topic (i.e. re-posting it) in the original folder where I posted it- not the CMML specific folder which didn't exist when I posted my original post!! I've copied it and pasted it into the CMML specific folder now!!

So that everything is in the CMML folder, could you copy and paste your reply below to the CMML folder where Graham is posting and where your original respond was? Then I'll reply to your reply below there in the correct folder!!

Hope that makes sense?!
Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
BCEX14
Posts: 6
Joined: 19 Aug 2019 10:04
Contact:

Re: Initial symptoms of MDS

Post by BCEX14 » 22 Jan 2020 09:10

Hi Chris, sorry I'm new to all this. I don't know what you want me to copy and paste as my post in reply to you is in the CMML folder already?
Thanks, Bronwen
chris
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Initial symptoms of MDS

Post by chris » 22 Jan 2020 19:59

Hi Bronwen. Sorry. It probably wasn't apparent to you that this was in the My experiences" folder. I've copied your reply to the CMML folder so I'll reply to you there!

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
SJST21
Posts: 5
Joined: 02 Mar 2020 13:30
Contact:

Re: Initial symptoms of MDS

Post by SJST21 » 20 Jul 2020 12:50

My husband was diagnosed with MDS (with multilineage dysplasia) intermediate risk in January 2020. His only symptom was being a bit tired and not feeling quite right and he put it down to getting older, he's 53. Had a number of blood tests, all showing low white count and finally a bone marrow biopsy. Was told he would be contacted if anything serious was wrong so he went back for results on his own as nobody contacted with any results so we assumed all was ok. He was told he had MDS and then went back to work with his booklet! Waited 6 weeks for a follow up appointment which felt like forever, it was very helpful, asked for Centre of Excellence referral and next appointment in Manchester next week where the journey continues 🙂
chris
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Initial symptoms of MDS

Post by chris » 20 Jul 2020 23:04

Hi there

Thanks for posting about your husband's initial symptoms and subsequent diagnosis of MDS. Sorry to hear he was on his own to get his diagnosis. At least he got a booklet! I was told absolutely nothing and when I was diagnosed there weren't even any booklets - so I just Googled and fretted until the next appointment!!

Glad he's got a Centre of Excellence appointment next week. Will it be in person or by phone? Hope it goes well. It might help to make a list of questions to ask to make the best use of the consultation.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
SJST21
Posts: 5
Joined: 02 Mar 2020 13:30
Contact:

Re: Initial symptoms of MDS

Post by SJST21 » 21 Jul 2020 13:21

Hi Chris
Thank you for your reply, it is much appreciated as is your advice. Pete has had one appointment at Stafford hospital in February and I went armed with a long list of questions and I also recorded the meeting which was really helpful. Some of the best advice he gave me was to ignore statistics as it is individual to the person and if you are planning something do a risk assessment 🙂 I cannot imagine how terrible it was for you as Dr Google can be very helpful and very terrifying 🙂. The appointment is face to face so will ask if I can record it. Main questions will be around treatment options, but yes I will do another list as I want to make the most of the appointment.
Kind regards Siobhan
chris
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Initial symptoms of MDS

Post by chris » 21 Jul 2020 14:20

Dear Siobhan

Yes, recording is such a great idea as we tend to forget so much that is said. The risk assessments/ prognostic scores for MDS can be a very blunt instrument as far as predicting survival is concerned and, indeed, we are all individuals who have different levels of health and fitness so you are right to be cautious. When I was diagnosed, there wasn't much information about my type (CMML) except that,after I had been diagnosed for well over a year, I obtained a leaflet from a well- respected Leukemia charity which said the median survival for CMML was 12-18 months!! That scared me witless as I suspected that I had had symptoms for several years before my diagnosis so I was well into Extra Time! Well, anyway, here I am 12 years post diagnosis and have never needed any treatment at all! Make of that what you will but I agree it's important not to hang too much on these figures.

Another thing I would say is not to feel anxious if Pete is told that they will just monitor him for a while. Not having treatment is a good sign as it means that the symptoms are not too bothersome and he might need only supportive treatments like blood transfusions or EPO injections. Hope you have a useful consultation. Wish you both well.

Keep safe

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
SJST21
Posts: 5
Joined: 02 Mar 2020 13:30
Contact:

Re: Initial symptoms of MDS

Post by SJST21 » 22 Jul 2020 15:04

Thank you Chris for your good wishes. I found it quite positive to read you were diagnosed in 2008 but did not want to mention that and that does help me to feel more hopeful. Thank you again for your kind and supportive words and will come back on after consultation.
Kind regards Siobhan
Post Reply

Who is online

Users browsing this forum: No registered users and 1 guest