A Question for MDS Patients

[PhilC]

I was diagnosed with MDS four months ago, I initially consulted my GP because I was feeling exhausted although this has passed since consulting a homeopath.

My problems are as follows :-

(a) Skin is unbearably itchy when ever my body temperature changes i.e getting into bed, after a shower. Once my temperature stabilises I'm ok.

(b) I feel warm but my skin is ice cold ! I have CMT ( Charcot Marie Tooth Syndrome) an inherited neurological condition so I am used to having cold feet BUT this is my whole body. It appears my body temperature must go up when I am asleep as I often find the sheets are wet on awaking.

(c) I'm getting wierd sensations in the area between my knees and buttocks, a little like red hot needles stabbing the area.

If it wasn't for the following I wouldn't really know I was ill lol

Has anyone else experienced any of these symptoms?

Has anyone discovered any medication etc that eleviates the horrid sensations?

If I take a anti-histamine it helps but only for an initial period.

Any help appreciated.

Philip

[Shelly1960]

is it worth trying both anti histamine tablets and topic cream also when you shower make sure you moisurise every time where are you I am in nottingham

[PhilC in reply to Shelly1960]

Hi Shelly, Thanks for the advice, I was a bit concerned about taking anti-histamines every day. Do you have MDS too? If you do I'd be interested to hear of your experiences, I'm only just coming to terms with it all.

I live in East Sussex.

Regards,

Philip

[Shelly1960 in reply to PhilC]

hi phil yes I have myeloproliferative neoplasm previously known as myeloproliferative disorder I am unclassified which makes it harder as even less information but happy to chat whenever you wish if you want my email will pm that to you and my numbers as got told off for putting on board not sure why as thought this was all secure and yes I know takes a lot of coming to terms with I was diagnosed in 2011 and only now feel able to get the information I need I know there are many emotions when you are first diagnosed and wish you all the best

[Shelly1960 in reply to PhilC]

hi phil how did you overcome the fatigues

[PhilC in reply to Shelly1960]

I went to see a homeopathic doctor whom I have known since I was in my 20's, afteryears of suffering psoriasis he cured it in two months.

I gave him my test result and he have me a prescription which contains among other things snake venom, within a week I was feeling back to normal. Prior to that I went to bed tired and woke up feeling the same, I even started dozing off in the afternoon! To be honest if it wasn't for the itch and cold skin I wouldn't know I was ill.

If you do consider going down the same route make sure you see a homepathic doctor not just a homepath, if you go on line and look up the homepathic society they will give you details of Drs in your area.

Initial consultations are normally around £70.00 and take around an hour, try getting that from an NHS doctor.

They will ask you a lot of odd questions because they believe in treating the whole person and not just the symptoms.

I know many think homeopathy is rubbish but ask yourself a simple question..why is the Queen and previously the Queen Mum treated by homeopaths?

[Shelly1960 in reply to PhilC]

I am a big believer in homeopathic treatments use them but not from a homeopathic doctor I use honey and aroma therapy I also have lemon and a particular honey that supposed to have healing properties each day and my blood on the whole high but stable but the fatigue seems to be taking over my life at the moment

[Aime]

Hi Phil, I have PV and get very cold feet but suffer from night and day sweats now. Itchy skin is a real pain!! I take 3 antihistamines a day when I am bad, loratedine in the morning and 2 phenergran at night which makes you sleepy at night so be careful if you take these. That seems to help with plenty of fluid and sudocrem antiseptic cream on the skin seems to soothe as well as plenty other moisturiser for sensitive skin. Best wishes, every sympathy Aime x

[PhilC in reply to Aime]

Thanks for the advice,. I will give it a go.

Philip

[cheridiane]

My husband also suffers from extreme itching, especially after a hot shower. He now showers in luke warm water a couple of hours before bedtime, and also now uses 100% pure olive oil soap. This helps a lot. I have been able to purchase the soap on-line at a fraction of the price.. He also uses a antiseptic moisturiser cream.

[Hidden]

Hi Phil and welcome to the "club",

I was diagnosed with PV in 2011 and still have all the symptoms you mention. I take hydroxycarbamide 2 x 500mg a day and aspirin as well as others medications for other issues. Among the symptoms you mention I was interested in the " cold skin". I have this too. Particularly arms and around face and neck. If I feel my arm with my other hand even through long sleeves I can feel the coldness even when the room is warm. My face is always cold and sometimes my facial bones feel sore. Is this the same as you get?

With all good wishes.

[PhilC in reply to Hidden]

Now this is one club I would have rather not joined lol

I find my whole torso is cold to the to the touch even though I don't actually feel cold !

I make sure the room temperature is high but it makes little difference, most odd.

Philip

[Shelly1960 in reply to PhilC]

hi phil daft as it sounds has wearing something like A ONESIE HELPED AND I LIKE YOU A CLUB I WISH I DIDNT HAVE TO JOIN or even a blanket covering I find that helps but make you feel old don't know if will work for you as till now didn't know the coldness was due too mpn

[Mazcd Partner MPNVoice]

Hi Phil, can I just ask if you have an MPN/D, either PV, ET or MF, as MDS is different, and Prof Harrison has read your question and she has said that some of the components that you mention above, ie itch, do occur with a MPN. Kind regards, Maz

[PhilC]

Dear Maz,

Not sure of the answer to that one, the consultant described it as MDS with excessive blasts i.e 10%.

I assume something in the disease process causes excess histamine to be produced?

Does this also cause the cold to the touch skin ?

Regards,

Philip

[Mazcd Partner MPNVoice in reply to PhilC]

Hi Philip, not sure but I can ask Prof Harrison for you, however MDS is different to MPD/N, there is a very good patient support group which you might like to have a look at (you may have already looked, apologies if you have) MDS UK mdspatientsupport.org.uk/. Kind regards, Maz.