Real fears about motor neuron disease

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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of anxiety, which have unfortunately led to having three nervous breakdowns, one of them where I became so socially withdrawn I hardly ever went out of the house for over a year.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

0 likes, 7 replies

7 Replies

  • Posted

    Hello Bassette, I am so sorry for your issues to which I have no

    Answers except hang in there.I am waiting forTuesday to have.

    an EMg.

    to tell if I have ms.T his is the scariest part of my

    illness.Out of all the condition.s there are,why ms?This Thursday

    will be having sonogram to see what is up with large mass on

    Thyroid.Just curious but has anyone mentioned

    gall bladder to you?Mine had caused me many hours of pain

    and anxiety until I had it removed. Best thing ever for me.On a

    funny note,my boss expected me back at work the next day.He

    said it should not be that bad.2 weeks later he called apologizing

    as he had his wife call 911 for him.He was having a gall bladder

    attack and his was removed.lol He said it was so bad he cried.

    Lol I wish you well and hope you find out what it is really soon!

  • Posted

    Hi Andrew,

    You sound in such a bad way. I know what you mean about being taken seriously if you have had any kind of mental illness or stress, everything is put down to that. In my case my blood shows up all sorts, so in my favour the doctor cant dismiss those things (but they still do anyway).

    I had a problem for 10 years that they said was in my head, eventually someone did listen and I had facet joint problems that they were able to correct, but I went through 10 years of pain! The comment that "it was in my head" is still on my records even though it was a proved condition. I think doctors see that and make up their minds before anything else. This is the stigma attached to depression and anxiety. 

    But stress can cause so many symptoms its very hard to know what is stress and what is a condition and I can understand in some cases stress can be the problem. It can become a visious circle, symptoms, stress more symptoms. You do have a right to get a second opinion and for peace of mind maybe thats what you should do. Or ask for the relevant blood tests to rule things out. You would be surprised how many different blood tests there are and many GP's wont necessarily know about. If you can find out what blood tests you need to help diagnose your symptoms then maybe you can go back to him and ask for the bloods first and if any of them show anything you have a solid reason for being refered. It may take a bit of research and you have to refrain from diagnosing yourself.

    Good luck, I hope you get things sorted out. 

  • Posted

    Hi Vix

    Thank you for your reply and sorry to hear about your experience and how long it took to get your health problems treated. My doctor is still refusing to send me to see a neurologist. He has said that the does not think that what I am experiencing has anything to do with motor neurone disease/ALS. I have had an array of blood and urine tests done, but I know that many neurological conditions such as motor neurone disease can not be picked up on a blood test. The firustrating thing as well is that my doctor has not really carried out even any basic neurological tests apart from a couple of tests to measure the strenght in my hands and arms, which seemed to be fine. This is now about the fourth time he has refused to send me to see a neurologist. His reason for refusing to do so is that waiting to see a neurologist would cause me more stress. But to be honest the opposite is the case. My mind is just full of what ifs at the moment and I just want some answers. I am now seriously considering self paying to see a neurologist and to pay for anMRI scan myself. Whatever my doctor says, I know my body better anyone and it has not felt right for a long time. 

    • Posted

      Check for tick disease. You can carry for a long time and it can make you Ill. I thought I had everything wrong with me because I had or have every system of every disease. Been seen by rheumatologist, neurologist, endocrinologist and all boiled down to Rocky Mountain tick fever, which I carried for over 2 2 1/2 years. Gall bladder, appendix removed and thyroid also hypo.
  • Posted

    Do you reside in the uk.   They should not be able to refuse you a private consultation.  The most you would pay is about £200.  I would do this if it would ease your mind.  There is also something called benign fasciliation syndrome which caused twitching
  • Posted

    Thank you all for your replies

    I have now paid privately to have a blood test done for Lyme disease. I do like walking in the countryside quite a bit so I thought I would get checked out for that. Unfortunately, my GP still refuses to send me to see a neurologist. I asked him to explain his reasons why and he has said that it is not necessary as my problems are due to health anxiety. Luckily some of my twtiches and particularly the whole body jerks have subsided a bit over the past week. I have been trying to put myself in a more positive frame of mind. I have contacted a neurologist directly in London to see whether he will see me without a direct GP referral. The only other thing I can think of is to see a GP privately then try and see a neurologist that way. Hopefully, I should hear back from the neurologist in the next couple of days. At least now I have started to get my appetite back and I have been sleeping better the last couple of days. One of the main things that worries me is that my dominant hand seems weaker than my other hand. I find it much harder to grip objects with my dominant hand and I have noticied a bit of shaking in that hand too. I am on 20 mg of Seroxat/Paxil and have been on a short course of diazepam so that may be the root cause of this shaking. I hope faye70665 that your EMg was okay. Take care Everybody.

    Andrew

  • Posted

    Ask your doc to check bloods for thyroid, adrenalin levels and blood sugars too to rule out other possible conditions of these come back normal then you may not need an endocrinologist and also mention fibromyalgia and see what ur GP says not all are familiar with this consition then ask to be referred to a rheumatologist sounds like my symptoms I have for Fibromyalgia which a rheumatologist can diagnose. Keep us informed how you get on and hope you feel better soon. X

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