Posted - 04 Dec 2008 15:39
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Hi everyone I am new here. I wasn't really sure whether to post here or not as I haven't been diagnosed with PD, although I have a suspicion that I may have it, or a form of parkinsonism. I am sorry that this first post is likely to be long! I will try to keep it as short as possible.
I am 49 years old. I became ill in December 2005, although if I look back I was having some symptoms before this but I was trying to ignore them. Some of what I am about to relate could be completely circumstancial.
In December 2005 I had to see the practice nurse for a flu jab. While I was there she took my blood pressure, and found that it was really high. I had been diagnosed with hypertension earlier that year. My medication was changed to Adalat and I was told to rest.
I started to feel very unsteady on my feet and had very little energy. I felt as if someone had slapped my face; it felt numbed and tingling. I started to have problems with my speech. I had been having some problems with my speech for over a year before these events, I had problems with volume and my voice sounded very hoarse (even though I didn't have a sore throat) and sometimes my voice sounded strangled. This would go on for days and then my voice would return to normal. But now I developed a stutter, and found that I would 'freeze' when I tried to speak. I knew what I wanted to say, but it was as if I couldn't engage my mouth. I used to refer to this as 'blanking', but it wasn't like I lost conciousness or anything, it was much more that my mouth didn't engage. It is very difficult to describe these things, which I think has only added to the position I am currently in.
I went back to my GP in January 2006. At first he thought that it might be something to do with the adalat he had prescribed. I had had problems finding a blood pressure tablet that suited me when I was first diagnosed with hypertension, so he thought that this might be causing me problems. He took me off of the adalat and put me back on my original medication. Things didn't improve.
Walking became increasingly difficult. I was determined not to just give in and would walk everyday. I found that my legs would stiffen as walked, and I was unsteady which had the effect of making me look drunk. There was some variation in how far I could walk and how unsteady I was from day to day. I want back to see my doctor.
My GP was off sick, and this is where things get really complicated, because for the next year I saw a different doctor just about everytime I visited the surgery and had to tell the story over and over again. The doctor I saw this time could see something wasn't right, did a neurological examine and referred me as a urgent referral to a neurologist. I saw the neurologist within 2 weeks. He examined me, diagnosed stress, and told me to go back to work. I had already tried to return to work, but was sent home as I was unsteady on my feet and struggling to concentrate. I was working in the residential department of a school for proundly disabled children. So I want back to my GP.
I saw a different locum. He sent me to see another neurologist. This one ordered a MRI scan of my head plus various blood tests. My walking continued to deteriorate. My legs had come increasingly stiff and the distance I could walk was decreasing. I started to use a stick. I had my MRI in April 2006, but had to wait until July before I got the results.
In May a new symptom started. It started over course of a couple of weeks. I started to get the odd involuntary movement. My head and upper body would be thrown back like I had been startled. On the May bank holiday weekend, I started to get them repeatedly, sometimes as many as 3 a minute. They were worse when I was trying to rest. This went on for 2 days, on the 3rd day I phoned the on call doctor and was prescribed diazepam. It eased them but didn't stop them. I have had a few episodes like this over the past 3 years, I have involunary movements every day, but they can vary in their frequency.
I saw the neurologist in July 2006. He said that the MRI had shown nothing. I told him about the involuntary movements, not that I need to as I was having some when he saw me. He did a neurological examination and said he couldn't find anything wrong and referred me back to my GP.
I waited a couple months but I wasn't getting any better. I had wondered about ME/CFS, and mentioned it to my GP. My symptoms were unlike those of anyone I had met online, I didn't have flulike symptoms, my sleep wasn't distrupted nor was I sleeping longer than usual, I hadn't had a day in bed since becoming ill. The only thing that did seem to be like ME/CFS was that I seemed to suffer muscle fatigue, well that is what I thought it was as my muscles would stiffen whenever I tried to exert myself, the effort it took to do anything was really draining. My GP was unsure and decided to refer me to neurologist number three!
He was very thorough, although he seem to not like the fact that I came with a list of my symptoms and that I used the word myoclonus. I had tests over 2 days in January 2007. I had a MRI of my head and spine, a lumbar puncture, EEG, chest xray and various blood tests. Nothing showed up. He diagnosed ME/CFS, even though my symptoms didn't match any of the ME/CFS criteria currently in use. He referred me the the local CFS/ME service.
I saw the doctor at the ME/CFS centre in July 2007. He, unlike the neurologists I had seen, spent about an hour with me and asked detailed questions. He did a neurological examination and found spasticity in my legs, a persistent fine tremor in my hands, and a positive Romberg sign. He didn't think that I met the criteria for CFS and suggested to my doctor that I should be referred to the National Neurological Hospital in London. Neuro number 4!
My wife and I went to see the consultant in London hoping that I would get a answer at last. It was November 2007. We had hoped in vain. The neurologist said "you have seen three neurologists, two of whom I know personally what on earth are you doing here!". He then accused me of going from one neurologist to another, although I had never referred myself to any of them. My wife and I were stunned and I have no doubt that the stress of the encounter coloured the way I behaved, and added to his belief that my problem is psychiatric, even though I had seen a neuro-psychiatrist who found nothing psychiatrically wrong!. He did a brief neurological exam. I felt really stressed by the situation, which I think effected my reactions. He went away and saw his boss, came back and said they would admit me for more tests although he thought it was psychological.
I was admitted to the National in January 2008. I saw a different registrar who treated me much the same as the one I saw as an outpatient. All that happened during that week was that I had another lumbar pucture, a startle test, saw the main consultant on the ward for about 10 minutes, his manner was much lke those of his underlings. He said I should have just accepted that I have CFS, he didn't seem to be concerned that the supposed expert in CFS said I don't have it! I did see a movement disoder specialist for about 10 minutes, along with his entourage, but by this time I was so stressed out by my treatment that I think he thought that I suffered from a anxiety disorder! I had a few blood tests. I was then told that I have a psychogenic movement disorder.
The national had me back as a day patient in April 2007, and I had a EMG, EMG with a EEG, saw a speech and language therapists, and had a neuro-psychological test. I don't know the outcome of all of these tests. I saw yet another of my consultants registrars in August. She was much nicer and I felt at ease with her. I explained what had happened at the National. She aggreed that a psychogenic diagnosis is one of exclusion and it might not be right, but that was the one they are working on at the moment. I have refused CBT as I can see no point, as I know that what I am experiencing isn't all in my head! I continue to get worse. I have started to have tremors in my right shoulder/arm just recently, they only last for 10 or 15 minutes at the moment. My gait is increasingly shufflig, and I tend to walk with a stoop, although it does vary from day to day.
Has anyone else on this forum had as much trouble getting a diagnosis as this? Do symptoms in PD wax and wane or are they consistent? Are myoclonus and dystonia symptoms of PD?
Sorry for the very long post. I'll end it here!
Posted - 04 Dec 2008 23:33
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Thank you for the advice, support and welcome.
I had never thought that I might have PD or a form of Parkinsonism until recently. I have such a range of symptoms that my first thought was that I have MS. I think that this is what at least two of the neuros were looking for. But two MRIs have been clear as have two lumbar punctures.
I didn't realise that PD had so many different symptoms (I haven't listed all of them) and presentations, I also thought that it was largely a old person's disease and that I was too young to have it. I now realise that this is not the case. It wasn't until I noticed how my gait has started to change in the past month or so that I started to wonder. I have to say that it does vary. My legs are always stiff and become increasingly so as I walk, I have had foot drop for about two years, but now I can sometimes only walk with a shuffle and turn with small steps. My posture has become more stooped when walk. The occasional tremor has also raised my suspicions. What I am not sure of, is how much symptoms in untreated PD can vary from day to day. Although I have most symptoms everyday, I don't have all of them, they also vary in intesitiy. Some days are better than others. This can be frustrating as I never know quite how bad I'll be from one day to the next.
My biggest problem now is going to be getting someone to listen to me. Now one of the top neurological hospitals in the country has said they think my problems are psychogenic, I think it is unlikely that any other neurologist will look objectively at me. I am sure that if I go and say I think I may have PD, they will put it down to somatisation! Added to that, my past experiences of neurologists makes visits to them quite stressful and I find it difficult to act naturally when being examined. I get worried that I will get accused of wasting their time again! I am my own worst enermy. So I am not sure where I go from here. I have recently changed my GP as I was finding it difficult to make the journey to his surgery, I am hoping that my new one will take me more seriously and fight my corner.
Would it be worth me phoning the PDS helpline? Are they likely to be able to advise?
Posted - 04 Dec 2008 23:45
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Welcome to the forum. I'm really sorry to hear the problems you're having at the moment and my thoughts are with you. Your story sounds very similar to the terrible six years of hell i went through trying to get a diagnosis. Like you I went through several different consultants - psychiatrists,hand surgeon, rheumatologist, neurologists and finally a body movement specialist. My diagnosis ranged from an anxiety disorder, carpel tunnel syndrome(which i had a carpel tunnel release operation, obviously it failed) MS (my dear brother has MS so they thought i could too), CFS, Fibromyalgia, cerebellum pressing on the spinal cord, Lupus, MS again, anxiety disorder(told me symptoms caused by stress) Wilson's disease and finally Parkinson's disease.
I had several different tests similar to you but it was the resting tremor which finally completed the puzzle prompting the body movement specialist to request a Dat scan which shown i had less than 5% dopamine which suggested Parkinson's or something similar. I started medication and was referred to a physiotherapist who taught me to improve my walking and balance.
These are the tests i had to diagnose PD...
1. Repeated movement of finger to thumb which eventually slowed down and froze when observed for a minute or two.
2. Cog wheel rigidity - when moving limbs an uneven jerky movement can be felt which feels as though your arm is going over a cog wheel instead of smooth movement.
3. I was asked to draw a circle and write my name, because PD causes writing to become small and uneven.
4. Walk up and down the corridor, asking me to turn and walk again, taking note of the lack of arm swing and left leg dragging, foot failing to clear the ground causing me to trip up and at times fall.
I was told if it wasn't PD or a parkinsonism i wouldn't respond to treatment. Fortunately i responded to treatment. Unlike you i did have CBT which i did find of great benefit because i did in fact have an anxiety disorder created by the trauma of all of this. Anxiety is actually a symptom of PD along with depression due to the low dopamine levels affecting our mood and behaviour.
So hang on there Paul, it isn't all in your mind and hopefully pretty soon you'll have a diagnosis. Mean time i would definitely take up the other of CBT because i think you would benefit from it in the long run what ever your diagnosis.