Real fears about motor neuron disease

Hi Everyone

I am very new to this forum, but I thought that writing about my current difficulties on here would be a cathartic experience. From reading previous posts on here, it does not seem that my experience is a unique one.

Let me please give you first some background, which will hopefully place into context what my current difficulties are. I have a long history of anxiety and occasional bouts of clinical Depression. I have been a mental health service user for most of my adult life and experienced intermittent r bad experiences of anxiety, which have unfortunately led to having three nervous breakdowns, one of them where I became so socially withdrawn I hardly ever went out of the house for over a year. During this time, I have been prescribed various forms of medication, but have been on sexorat, an antidepressant for around 12 years. I am currently on only 10mg of seroxat as over many years I have been trying to slowly get myself off the medication and try to find alternative strategies to cope with my anxiety.

Now just to fast forward to my current difficulties, which really began around 9 weeks ago. My onset of difficulties seemed to take place around also the same period that I was experiencing problems at work. I am a teacher in higher education and as many of you will know that are teachers, it can be very stressful sometimes. Anyway, around this time I went away for the weekend with my girlfriend (who has been incredibly supportive, as have been all my family). In the middle of the night I woke up suddenly with severe cramps around the upper abdomen and lower chest area, which thankfully dissipated after about half an hour. At the time I put the experience down to some kind of bad allergic reaction, as I had eaten seafood earlier that evening and I know that in some cases that seafood can cause such a reaction. Apart from feeling slightly nauseous in the morning, I was okay the next day. Over the next couple of weeks I experienced on occasion abdominal pains. However, around the Easter break when one night I was working at home, I started to experiences aches and pains in my upper arms and above both of my eyes. I was going away for a couple of days afterwards, so was hoping that there was nothing serious and these experiences would go away. However, another couple of days went by and when I was taking the dog out for a walk I started the experience the abdominal cramps again which then started a panic attack. I phoned up 111, as I did not know what to do. They advised me to go and see a doctor the next day. I went to see the doctor the next day who performed a thorough physical examination of my abdomen and concluded that I had constipation, which she gave me treatment for. I felt better for a day or so , but the abdominal pains returned again in a couple of days and this time I was struggling to lay down and sleep. My upper abdomen felt like somebody was putting an elastic band around it. I also had another panic attack when I was on the train because I had the feeling that I was going to black out.

I arranged an emergency appointment to see my GP, who thought that my symptoms were due to extreme anxiety and stress, but would carry out a blood pressure test, ECG and a blood test to rule out anything sinister. Aside from having slightly high cholesterol, all the test came back clear. This was around mid to late April. However, on one of the weekends around this time I again woke up in the middle of the night. The upper abdominal pains had returned, but I was also very dizzy and experiencing pins and needles down both my arms and hands. The ambulance was called out and I was taken into accident and emergency as I had a blood pressure reading of 190. I was then given another blood test, a urine test and a chest x ray, which came back all clear. But I was told by the attending doctor who was seeing me that I would probably need to go onto blood pressure tablets to control the hypertension.

Things however did not resolve themselves. I still had the upper abdominal pains which were still causing me particular discomfort and especially when laying down. My GP then put me on short cause of diazepam to ease what he thinks is anxiety driving my experiences. He also carried out a thorough physical examination of my abdomen area and could not find any abnormalities. I had never heard of symptom checker or anything like that before and I kind of wish I had remained ignorant of its existence. When you are already stressed and down it is quite a horrifying to see the list of conditions that may be associated with presenting symptoms. I started to think that I was showing signs of pancreatic cancer or an abdominal aortic aneurysm.

Then about a week later I started experiencing more symptoms, which really alarmed me. I started experiencing fasciculations in my biceps, buttocks lower arms, hands, legs and feet. These muscle twitches would also be accompanied by painful muscle cramping and in some cases weird burning sensations. All though these sensations could pretty much occur randomly they were more located on the right side of my body. By this time I started to lose interest in a lot of things in life that I had enjoyed before such as music and reading. I have also been signed off sick from work. One of the problems is that because I have a past history of mental health problems my family members related all of these problems to anxiety. I know from my own research and teaching experience as an academic the problems that people with mental health problems can have with having their problems taken seriously and something which particularly impacts on the health profession. It is also now having a massive impact on my relationship with my girlfriend who does not live with me. I have been unable to see her most weekends because of my difficulties and many times I have just sat down and cried.

When these fasciculations started to occur I also noticed that I started to have problems with sleeping. Apart from when I am on diazepam which seems to dampen them I am unable to sleep at all. Again I went to my GP, who did not give me any clear explanation apart from that it was anxiety causing these problems and even though these symptoms were real they were not related to any underlying organic cause. Alarmingly the muscle twitches have started to migrate to over regions of my body including my lips and tongue and Neck area. I have also been involuntary gulping and during the night when I lay down sometimes I feel as if I am going to choke and having whole body jerks which keep me awake. My symptoms have escalated to the point when I now have no appetite and have near constant diarrhea. I also have problems with swallowing and keeping food down. Thankfully my speech does not appear to be effected in anyway. My right Arm, hands and fingers also now continually make a cracking sound when I move them. There is also a slight tremor in this particular part of my anatomy. It also seems that objects such as a mobile phone are becoming much more difficult to hold in my right hand. For example, I can hold a pint glass of water easily in my left hand, but it is nearly impossible in my right hand. I have become fearful about using my right Arm, as I am scared that i am starting to experience weakness there. On my last visit to my GP he still refuses to refer me onto to a neurologist. He indicated to me that he did not want to create any more stress for me by sending me to see one. But this is not helping me at all. I know my body better than anyone and need the reassurance that things are okay, so that I can get on with my life. I just feel I am stuck in this what if scenario. To cap it all on Tuesday when laying down I had the worse experience so far. I felt as if half of my mouth was closing up and when I tried to raise my head I could not move it for a while. It was as if my muscles were immbolised in my neck. Because of this I went down to Accident and Emergency. I was told by the doctor down there that what I was suffering from was adrenaline overload due to anxiety and stress and that was at the root of the physical symptoms.

The all over body pain has returned again and particularly in my upper and lower abdomen, which makes me even more fearful about eating. I just have no appetite for food again. I am even thinking about going to see another GP privately for another opinion.

I am also now experiencing aches in my neck and shoulder and sometimes sharp pains in throat and what I feel as problems breathing when lying down.

I am so upset about all this and am at the point of despair and depression. Running through my thoughts are things like motor neurone disease, MS or even CJD. I am going to see my GP tomorrow to ask him directly why he will not refer me to a neurologist. I have cried in front of my GP and told him how this is affecting my life, but I am getting nowhere. I just feel I am not being listened too. Sorry for the long ramble. I would really appreciate any replies and if anyone has had any similar experiences or of been taking seriously by the health profession.

Thank you for reading my post

Andrew

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