This is the first time I’ve ever posted anything on a forum although I’ve been here plenty of times and read posts by others, mainly looking to see whether anyone else’s situation is similar to my own as I sometimes feel so frustrated with it all.
My problems first began in late 2012 when my lower left leg and foot started to go numb when I was out running and around the same time I also started to have pains in my back and neck and felt a bit ‘trembly’. After a few weeks my symptoms gradually improved and I found that I was able to run for a longer period without experiencing numbness in my leg and foot. However, during the following months I began to have episodes where I would feel weak and faint which were often accompanied by other symptoms such as tingling lips, trembling and palpitations – sounds just like a panic attack I know, but I had previously experienced panic attacks and this just didn’t feel quite the same. I also began to have a constant feeling of slight numbness and tingling all down my left side in addition to which the muscles in my back and neck started to feel really stiff which eventually resulted in me making an appointment to see a GP - I had not been to the doctors for around 5 years and was a bit ‘phobic’ about doctors and hospitals etc so it seemed quite a big deal at the time! I then had various blood tests etc which did not reveal anything but my blood pressure was found to be on the low side which could have explained the feeling faint etc.
In early August 2013 I then started to have constant cramp in my left calf along with pins and needles, in addition to which my left arm started to feel a bit weak and tingly and I had pins and needles in my fingers. By the middle of the month I had started to have problems with my left leg when walking as I felt like I couldn’t control my left foot and would often feel slightly dizzy and off-balance. My left hand had also started to feel really stiff and awkward when trying to do things such as writing, holding cutlery, doing up buttons etc. I also started to have almost constant back pain along with a shaky feeling inside which made it hard to stand for any length of time.
In light of my continuing difficulties, my GP then referred me to a neuro and I had my first appointment in October 2013. The neuro who I saw arranged for me to have an MRI scan of my head and neck and I subsequently received a letter informing me that my MRI scan was ‘normal’ which excluded multiple sclerosis as a diagnosis and I later discovered that my follow-up appointment had been cancelled.
As there was no improvement in my symptoms, I then saw another neuro who recommended that I should have a further MRI scan of my head and neck using contrast. The neuro who I had originally seen arranged for me to have the further scan as well as a lumbar puncture, none of which revealed anything that might be causing my symptoms and he sent a letter to my GP which basically stated that that there did not appear to be any organic explanation for my symptoms.
By this stage, my condition had deteriorated somewhat in that a lot of my symptoms had now spread to my right side although they didn’t seem quite as bad as on my left side, in addition to which I had developed a few new symptoms. At this stage my GP felt that it would be best if I saw somebody new and she therefore referred me to another neuro who I first saw in May 2014.
I then had some further blood tests, an MRI scan of my spine and some EMG tests, all of which came back ‘normal’. Following a further examination, the neuro then decided to give me a trial of Madopar and started me on a dose of 50mg 3 x a day (this was in July 2014).
I’ve never been keen on taking medication and, having read the accompanying information leaflet, I was not really happy about taking it...if you could have seen me taking my first dose it was like somebody undertaking a ‘Bushtucker Trial’ on I’m a Celebrity. Having not suffered any really adverse effects, I continued to take the meds and, within a few days, there was definitely some improvement in my overall mobility and I didn’t feel nearly as stiff. My GP then increased my dose of Madopar to 100mg 3 x a day and I went back to see the neuro a few months later.
At my appointment, the neuro indicated that he did not believe that I had PD and indicated that I might possibly have a condition called dopa-responsive dystonia (DRD), although consideration was also being given as to whether I may have spastic paraperesis. At this stage the neuro told me to gradually increase my dose of Madopar to 200mg 3 x a day and advised me that he was going to refer me to a neuro who specialises in movement disorders.
I subsequently saw the neuro who specialises in movement disorders in March 2015 who, having carried out a thorough examination, was of the view that I may have PD rather than (DRD) and indicated that he would request a DAT scan. It was further agreed that I would gradually withdraw from taking my dopaminergic medication to clarify whether I really was benefiting from taking it.
I saw the neuro again 3 weeks later at which stage I had withdrawn all my dopaminergic medication and had not taken any for a few days and boy, did I feel stiff! Having carried out a brief examination, the neuro advised me to gradually put myself pack on my previous dose of medication and started me on 1mg of Rasagiline a day.
I then had a DAT scan in late May 2015 and was subsequently advised that this was ‘normal’ which made the diagnosis of PD much less likely. At this stage it was agreed that I should continue taking my medication and I would be reviewed in 6 months’ time by which time the results of some genetic tests should be available.
By the time of my last appointment with the neuro in December 2015, the results of the genetic tests had come back and they were ‘normal’. Prior to my appointment with the neuro, I had gradually reduced my dose of medication and did not take any at all on the day before as I wanted him to see me again in a non-medicated state which he said he found very helpful. On this occasion, the neuro re-examined me quite carefully after which he indicated that he did not find anything on examination which would be in keeping with a previous working diagnosis of either PD or DRD, although he was still of the view that there was definitely a problem. The neuro also discussed with me the possibility of this being a psychosomatic or functional disorder but indicated that he was nor certain of this diagnosis either. We also discussed some concerns which I had over my medication and it was agreed that I would try taking a lower dose of Sinemet Plus 4 x a day instead of the Madopar which I had been taking. The neuro also said that he would refer me back to neurophysiology for further investigations and confirmed that he would chase up the results of some further genetic tests which were outstanding so that’s basically the situation I am in at the moment.
For any of you who’ve managed to read all this without dying of boredom, thank you - I’ve got to the stage where I sometimes feel like I’m going crazy with it all and it can be quite hard to stay positive...