Dementia and MDS

[algarveanne]

Hi - I am new to the Forum as I don't have MDS - my mother does.
However at the same time she was diagnosed with MDS she was also 'diagnosed' with dementia. No label has even been put on the dementia but it is definitely fronto-temporal in some way.
At first they said that the 'dementia' was not an issue as the 'leukaemia' would get her first. Those are the words a consultant used.
But that was 4 years ago and now the dementia has overtaken the MDS in a big way, so much so that the latter has been ignored. At one point we were told that it had 'gone away', which of course it doesn't and now know it hasn't.

The problem I have is that because Mum is in a nursing home to be cared for because of the dementia and her MDS 'seems' to be fine (she had an emergency transfusion 10 months ago and since then blood counts have been normal) nobody seems to consider the MDS to be an issue. I have had to fight for her to have regular blood tests.
They just presume the fatigue is a symptom of the progressing dementia, but of course say that nobody knows.
I have never believed that the two are unrelated - the coincidence of symptoms, timing etc was just too convenient. But is is a VERY long story ( 5 years almost ) and I won't bore you with the details (yet!).

My question to the Forum is: has anyone, lay or professional, any evidence, knowledge, thoughts, suspicions etc that there can be a link between dementia and MDS..or vice versa?
I know that a lack of oxygen to the brain can cause many side effects including stroke and obviously when mum first became ill and before MDS was diagnosed her counts were very low and her brain could have been affected.
They did think it was stroke or tumour in the early stages before the BM tests.
Could it be that her 'dementia' is actually brain damage?

If anyone has anything they can tell me - even just anecdotal - I would love to hear from them.
Thanks

[Jayne]

Hi

I am sorry to hear about your Mum, dementia is such a trugly tragic illness.

I am no doctor and there aren't any doctors who comment on here. My first thought is that the 2 are not connected, however it is interesting. I will tell you how I was diagnosed.

I first started with pain in my upper left region of my face, and if I touched the left side of my nose a horrendous pain shot across to my left eye. It sounds weird and strange writing this. However, I was diagnosed with trigeminal neuralgia of the optic section. I was put on epilepsy tablets to numb the nerve that was firing. I reacted to these tablets badley and had a blood test and the MDS was diagnosed pretty quickly to be honest. I still have tablets for my head but I am reducing them and I feel fine.

My haematologist says the 2 are not related at all. My neurologist believes if my blood was fixed then my head MAY be ok, as a virus can trigger trigeminal neuralgia and therefore he believes my wonky blood could have also triggered it. But no-one can prove anything, it's all guess work. And to me there is no point trying to work this out, I have 2 conditions both of which need treating.

I think the top and bottom of all of this is that there are lots and lots of types of MDS, and as this usually affects the older generation there are frequently other ailments as well. This doesn't mean that they are or are not linked. As your Mum has had a blood transfusion 10 months ago that stabilised her blood counts seems very positive. I agree she needs to have blood tests regularly to see if she needs another transfusion, it seems so wrong that you have to fight for this to happen.

Regarding if her dementia can be brain damage, I have no idea. Surely the Doctors can tell the difference between the two? If it was brain damage how would her treatment differ?

I wish you and your Mum all the very best.
Jayne

[algarveanne]

Dear Jayne

Many thanks for taking the time to reply and sorry to hear you also have had dual problems.
The reason I want to find out - and I DO think the two are related and a virus may well have been the cause - is that the care that future patients receive may well hinge on more research in this field.
And without going into too much detail, my mother's treatment - or lack of it - over the last four years is the issue.
Thank you again for your reply and best wishes.
Anne

[janetstanford]

Hi Anne and Jayne

I do agree with Jayne your mothers illness is tragic and the strain and stress on the family will be huge i am am sorry
but is it caused by or causes mds i feel unable to comment on that 1 makes you think the virus issue there was an article i read earlier in the week that said maybe 20 percent of cancer(s) are caused by a virus (S) hmm gives us food for thought .....
what i can comment on is i find it hard to believe that after 1 transfusion and having mds that they do not do a blood test every 4 for weeks for example i think maybe a word with her doctor but i am sure you have already done that ...so i suggest a word with Sophie who can give advice
I am Transfused every 3.5 weeks appox done ok the last few times only 2 units each time because things have improved i do manage my condition my hospital transfuses under 9 (others may not ) but for the first 5/6 mths after i was diagnosed i was transfused every 2 weeks 2 units some times i was at 8 transfused 2 units which put me at 10 after the first week the symptoms returned and i was back in ..and 1 of the symptoms was memory i have mentioned this several times over the last few years ... i find within hours while being transfused my head clears ...so yes i would agree that low bloods do effect memory ..but again research into mds is not high on the list different people have different symptoms out of a lst of but certainly worth a thought or 2
well i have gone on long enough hope your mother is well hear from you soon
Janet