My Story

[Guest guest]

Hi. As a new member I thought you would like to hear something of my

story.

I am now 66 years old and in retrospect realise I have had sarcoidosis

since I was 32 and possibly before that.

When I was 32 I had 2 young children and a busy life but complained of

fatigue which I was told was natural with the amount I was doing. I

then dveloped numbness of my face and both thighs. I was investigated

for MS but was told that was not the cause but noone could say what

was the cause and as the syptoms subsided investigations stopped.

A couple of years later I developed a problem with my breathing and it

took me a considerable time to convince my doctors that it wasn't

asthma. I was eventually sent to the National Chest Hospital where

Sarcoidosis was diagnosed but the disease had been active for sometime

and I have permanent scarring in nasal passages,trachea and bronchus.

I was treated with steroids and was told to stay on a maintenance dose

for the rest of my life. I was told that sarcoid was self limiting and

that although I would have problems with the scarring I no longer had

sarcoidosis. Over the years I have continued with maintainance dose of

predniisolone which is increased when I have chest infections.

Over the years I have periodically complained of transient numbness in

my face and thighs,periods of unnatural tiredness,mood swings,

depression, unnatural crying reaction to emotion, poor balance

etc.etc. and 2 years ago I had 4 small TIAs which I thought were a

manifestation of the Sarcoid but my consultant didn't. I have also had

recurrent chest infections some of which required hospitalisation (one

in Kenya but that is another story)

My recent history is that I started feeling unwell about 6 months ago.

I did have a valid reason to be depressed and at first thought that

was all it was but I couldn't 'get back to the surface' even after the

cause was relieved. I had some discomfort in my left arm and leg which

at times was ?painful (I am sure you will recognise the ?) this was

followed by numbness in my face and in all my limbs. The numbness is

transient and worse when I am active. The worse problems are being

unsure on my feet and the feeling of fatigue and lethargy.

Yet again I have diagnosed myself. Having rcognised the similarity to

what happened 30 years ago a lot of things seemed to make sense and

although I am not happy with the diagnosis in many ways I feel more

comfortable with myself and have much more self understanding. I am

currently waiting to see my neurologist but do not have much faith

that he will accept that the problems are with the Sarcoidosis but we

shall see.

I have now told you much of my disease history but for those of you

who are still young and newly diagnosed I will say that my life has

not been easy but I held down a very demanding job as bussiness

manager of a health centre and later as an IT consultant for mediacal

practice. Since I retired I have been teaching Bridge and am currently

chairman of a large U3A. I am finding both very difficult during this

current crisis but hope to be able to continue. I have great support

from my husband and 2 married daughters but it is still great to come

onto a site like this and find people with similar problems to mine.

It is a great site so congratulations to you all and keep up the good

work.

Yours in love and friendship

Pat