[Josi]

Hi Everyone,

I am impressed by the courage and strength that the people wrting in show. I chose to post my mail in this discussion group as I am terribly confused. Am I a success story? a misdiagnosis? or am I delusional?

I joined up hoping for answers. The answer I was looking for and was pretty sure someone would have screamed out ‘Its a misdiagnosis’ but reading through this thread somehow brought up all the feelings of extreme helplessness and fatigued sadness that I was engulfed with when I was given the MDS verdict on 30th March 2010.

A bit of the background : I had been plagued with a chronic slipped disc condition for the past 3 years. In Sept 09 I was informed of redundancy. I took all the annual leave and went away for an intensive inpatient complementary medicine treatment regime for 6 weeks, which brought me effortlessly into the end of work in mid Jan 2010. This treatment necessitated bed rest for 3 months (i.e. till April ) as it claims to loosen all muscles.

Anyway by mid Feb as a result of eating some dodgy food, I contacted a horrendous gastric episode and was admitted to the hospital for 4 weeks in March. They could find nothing wrong but I could not eat anything but a teaspoon of jam and 2 tbsps of boiled potatoes a day. Much loss of weight, dehydration, anaemia and a thorough psychiatric evaluation later, they performed a BMT and concluded MDS – refractory anaemia. I was stabilised and discharged on 2nd April. Along with the gastritis I had a urinary tract infection which has resolved. I was also told that I have high levels of lead in my blood.

My stomach decided to mend itself and in the five weeks since the diagnosis my haemoglobin jumped from 8.3 to 11.7. So on 6th of May when I went in to get a result for erythropoietin response (?), the consultant told me that my Hb was back to normal and hence I might be having ‘Transient MDS’. He said it meant that I need just be monitored for some time : initially by the haematologists and then by my GP. We took it to mean that it was a misdiagnosis as my cytogenetics were normal, the blast cells under 2% and I did not have anaemia any more.

I had two days of delirious happiness then 2 days of guilt. Just 5 days ago, I had informed my relatives and I wished that I could have waited. The only puzzling fact that remains is extreme exhaustion. I don’t step outside as I get exhausted when I shower and change but the haematologist said with 11.7 Hb I should not be feeling tired. I was 52 when I was given the diagnosis, have always been very healthy and had a lot of stamina. I feel old and tired.

Can anyone tell what is happening please?

Any answer would be appreciated.

Many thanks

Josi

[Josi]

Hi Everyone,

I am impressed by the courage and strength that that is evident in your mails.

I joined up hoping for answers. The answer I was looking for and was pretty sure someone would have screamed out ‘Its a misdiagnosis’ but reading through this thread somehow brought up all the feelings of extreme helplessness and fatigued sadness that I was engulfed with when I was given the MDS verdict on 30th March 2010.

A bit of the background : I had been plagued with a chronic slipped disc condition for the past 3 years. In Sept 09 I was informed of redundancy. I took all the annual leave and went away for an intensive inpatient complementary medicine treatment regime for 6 weeks, which brought me effortlessly into the end of work in mid Jan 2010. This treatment necessitated bed rest for 3 months (i.e. till April ) as it claims to loosen all muscles.

Anyway by mid Feb as a result of eating some dodgy food, I contacted a horrendous gastric episode and was admitted to the hospital for 4 weeks in March. They could find nothing wrong but I could not eat anything but a teaspoon of jam and 2 tbsps of boiled potatoes a day. Much loss of weight, dehydration, anaemia and a thorough psychiatric evaluation later, they performed a BMT and concluded MDS – refractory anaemia. I was stabilised and discharged on 2nd April. Along with the gastritis I had a urinary tract infection which has resolved. I was also told that I have high levels of lead in my blood.

My stomach decided to mend itself and in the five weeks since the diagnosis my haemoglobin jumped from 8.3 to 11.7. So on 6th of May when I went in to get a result for erythropoietin response (?), the consultant told me that my Hb was back to normal and hence I might be having ‘Transient MDS’. He said it meant that I need just be monitored for some time : initially by the haematologists and then by my GP. We took it to mean that it was a misdiagnosis as my cytogenetics were normal, the blast cells under 2% and I did not have anaemia any more.

I had two days of delirious happiness then 2 days of guilt. Just 5 days ago, I had informed my relatives and I wished that I could have waited. The only puzzling fact that remains is extreme exhaustion. I don’t step outside as I get exhausted when I shower and change but the haematologist said with 11.7 Hb I should not be feeling tired. I was 52 when I was given the diagnosis, have always been very healthy and had a lot of stamina. I feel old and tired.

Can anyone tell what is happening please?

Any answer would be appreciated.

Many thanks

Josi

[Author]

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