Help-
Working together to make a difference
Proventus
Donate
Online
MS - Hughes Syndrome and Me
11th December, 2008
I first heard of Hughes syndrome approximately 18 months ago when
it seemed to hit the headlines on TV and national newspapers.
Having been diagnosed in 1996 with secondary progressive MS. I thought I should have the necessary blood tests to check for Hughes (A.P.S.) just in case there was a chance I had been misdiagnosed; after all, what did I have to lose? My G.P. had never heard of it, neither had the nurse who did the first blood test. Nevertheless, I was sent for ‘the wrong blood test’ initially. My G.P. insisted that I couldn’t have ‘sticky blood’ because of the demyelination which showed up on M.R.I. scans. I told her that I had read up on Hughes and the similarities between both illnesses were very similar.
I had another blood test which was carried out at my local hospital..... the blood
is sent to the lab for immediate testing. When the result came through as borderline
I was pretty astounded but of course I remained pessimistic – I didn’t want any false
hopes to be dashed. Approximately 2 weeks later I had another blood test, again at
the hospital. The result was positive but to be taken seriously, it is suggested
that 2 positive results are obtained. Approximately 6 weeks later I had my 3rd and
final blood test which again came back positive. By this time I was filled with
mixed feelings. Deep down I hoped I had Hughes and not M.S. but I tried not to build
my hopes up.
In March, 2007 I had an appointment with my neurologist which proved a complete and utter waste of time ...nothing new there... The appointment bordered on being ridiculous. I had an M.S. nurse who ‘assumed’ the optic neuritis I was diagnosed with back in 1990 had ‘been cured’ and was no longer apparent. I wanted to speak with my neurologist about the results of my blood tests, unfortunately he did not wish to discuss them until I had seen a rheumatologist. So, feeling completely let down yet again I stressed the issue of my blood test results. He told me there was nothing he could do for the time being. Being wheelchair bound I was now feeling very anxious at the prospect of developing a blood clot or heart attack. It was only due to the fact that I mentioned my Mother had died because of an embolism that he decided to sit up and take notice. I was then prescribed a low dose of Aspirin.
I then knew I had to find some answers and possibly get the result I dreamed of. I telephoned the Hughes syndrome helpline and made a private appointment to see a rheumatologist who had been trained by Professor Graham Hughes. This appointment took place in March, 2007 by a very nice, helpful and for a change, friendly doctor. It was a relief not to be patronised for once.
The rheumatologist explained every detail to me including the many similarities between the two illnesses. He said he would arrange for me to see a doctor at St. Thomas’ hospital in London. I went to St. Thomas’ in June and was told I would have to stay in for up to 5 days for various tests. I was taken in just 2 weeks later.
By this time I had ceased taking the aspirin as they did not agree with me.
Once in St. Thomas’ I began the several tests lined up for me. These were MRI scans
on my brain and spine, evoked potential tests, x-
Because I had undergone several tests, I did not know my results when I left the hospital 5 days later. I was given a blood thinning tablet called Clopidogrel which thins the blood in the same way as aspirin but without the side effects I had previously incurred.
I returned to St. Thomas’ a couple of weeks later for my results. I suspected I would be one of the few who had both MS and Hughes and hey presto I was correct!!
I was given the option either to continue with the Clopidogrel or to inject daily with 40mg of Clexane along with the Clopidogrel. I went for the latter, as like any MS sufferer what did I have to lose? With an illness such as MS, I am prepared to try anything.
The injections were 100% pain free, subcutaneous into my tummy. Unfortunately I did develop a problem or two along the way with tiny cuts which would bleed unnecessarily for hours or huge amounts of blood from a scratch on a toe. I informed the rheumatologist immediately and he told me to stop the injections. I stated that I didn’t notice any benefit whilst injecting the Clexane so I just settled on taking Clopidogrel alone.
Strangely, after 2 or 3 days, my legs became stiffer, transferring from an armchair
into a scooter was scary and in general I felt terrible.
I admit that in the time
I was injecting I didn’t notice any ‘real changes’ ... it was only when I stopped
that I became noticeably worse. Again I informed the consultant at St. Thomas’ who
immediately wrote to my GP requesting I take a lower dose of Clexane (20mg pre filled
syringes).
Sadly this has been no real benefit to me and I have completely stopped
the injections although I continue to take one Clopidogrel tablet each morning.
I know I have M.S. and Hughes which was not the answer I was hoping for but at least I know that my blood problem is under control. I was constantly worried that being immobile, I may have been prone to developing blood clots etc but I feel at ease now that it has been recognised.
The reason I am sharing my experience is because I strongly believe there are many,
many people who are suffering because of a misdiagnosis.
I feel extremely angry that
Hughes, APS, sticky blood, is unknown to many people in the medical profession. Considering
it was ‘discovered’ by Professor Hughes in the early 80’s it’s an absolute disgrace
that most GP’s, consultants etc are unaware it exists.
More importantly, everybody
should be tested for this illness before they are diagnosed with MS.
After my experience I would urge every MS sufferer to request the necessary tests because who knows?? There are many people out there who do not have M.S.
Source -
Other web sites
