Ongoing fear als/mnd

[victor jara]

I have had a number of undignosed neuro/muscular symptoms for about 15 months now. As I have said in my other posts I have had many tests last year and nothing was found. I have however become pre-occupied with the thought I have mnd.

I have reached the point where I am trying to just live my life one day at a time and not think too much about my body. I am currently on citalopram 20mg and my GP has given me pregabilin for General anxiety disorder. I have not started it yet but wonder if others have experience of this drug.

I do believe there is something physical wrong with me but having seen 2 neurologist , neuro-surgeon ( diagnosed sciatica) and orthopeadic surgeon in the last year nobody could tell me whats wrong so just trying to mange my anxiety. I am on the waiting list for 6 sessions CBT for health anxiety.

[Carys]

Hi there,

I am sorry to hear that you are so worried about MND, it is one of those fears that crops up on NMP many times. So, are they putting your 'neuro symptoms' down to anxiety ? If you don't mind me asking, what are the symptoms ?

[victor jara]

Thanks for your reply Cary's. They started last year when I noticed my arms felt uncomfortable when driving and holding a phone, dropping things, tremor etc. I then noticed muscle wasting in both forearms. I was misdiagnosed with carpal tunnel and had decompression surgery with no improvement

I then started getting symptoms in my legs weakness, cramps, pains etc. This was later diagnosed as sciatica.

I then started to experience weakness in my facial muscles in Janauary, chewing, smiling etc however prior to this last year I had 2 mri scans a nerve study and an emg which apart from the sciatica all were normal.

The 2 neuro's one a motor nerve specialist both did not think I have mnd but like the scientists they are could not tell me what it was. I have had 3 lots of bloods testing for everything with nothing abnormal.

My GP now does not want to refer me to any other specialist apart for anxiety but does not rule out physical illness but just says if it is something like mnd lets wait and see as it will progress. I can understand this but it does leave me so pre-occupied with my body and the slightest change that I find it very difficult to be objective.

[Carys]

I can see why you would be so worried, especially as there has as yet been no diagnosis from even neurologists (despite the fact that there is obvious muscle wastage)! I think most people would find it incredibly hard to deal with this situation and manage anxiety. Are you finding that your symptoms are gradually progressing ? Are there days when it is better than others ? Apart from the anxiety, are you finding that you are able to function 'normally' in your daily activities ? I'm kind of rather at a loss to know what to say, (that doesn't happen often lol), which will help you. There are psychological illnesses that can produce symptoms which mimic neurological conditions, but I am presuming your GP can see measurable physical changes in your condition ?

Sorry, more questions.........

---------- Post added at 17:27 ---------- Previous post was at 17:10 ----------

Forgive me for appearing like a stalker Victor, but I have looked back at previous posts you have made about MND/ALS to try and understand how the last few months had been for you. In them you have said that the symptoms in your arms come and go, you also say that you have had chronic HA for the last year, and at one point you say 'At the moment I am obsessing over my jaw being weak , eating, speaking and chewing food. This is driving me crazy and makes me think I have a serious neuro disorder.' I have read also that you say that at times you are better than others.

It makes me think that if two neuro specialists have said you do not fit the criteria for MND and all tests are currently negative, then the symptoms you are getting are part of your HA. The mind being such a powerful thing, it is astonishing what it can make happen. I knew a girl who was severely disabled, she was cathaterised, was extremely thin and wasted, used only an electric wheelchair, suffered atrophy and spasms in her limbs (to the point of having wrist straps to stop her arms having large dangerous spasms). She could not eat solid food and was unable to use many of her muscle groups. Basically she was severely disabled, but, nobody could define what her progressive condition was. She was this way for 5 or so years, developing new complications with her 'illness'. Hard to believe but she is now a happy healthy your woman, walking, eating, absolutely 'able bodied' in every respect. She wasn't lying, or attention seeking, but eventually her condition was diagnosed as being of a psychiatric/psychological nature, which she was treated for. The power of the mind !!!!

I guess what I am saying is, don't rule out that it is your own obsession about MND which is making you develop the symptoms.

[victor jara]

Thanks again for your thoughts Cary. I certainly try to keep an open mind about at least some of my symptoms being Psychological. I am a mental health professional and have some awareness of the mind/body link and psychosomatic disorders.

However my symptoms are very real and although some of my symptoms do not fit with als some do. I have also wondered about auto-imune disorders which I understand can be very difficult to diagnose as well.

I have been quite an expert on als and it has not helped me. I used to troll the internet looking at all the possible symptoms. Positively the kind of weakness in my hands and arms is not typical and the Motor Nerve specialist said the strength and resistance in my limbs was all normal for a man of my age. The weakness is more subtle and comes when doing repitive tasks and holding phones etc.

As I said I try now and live the best that I can. I am giving the pre-gablin a try . Whatever else I have a certainly have severe health anxiety and find forums like this really helpful.

---------- Post added at 21:38 ---------- Previous post was at 21:33 ----------

PS Cary. I can still do most things I need to do apart from play squash! About symptoms coming and going. Its hard to say but sometimes my arms feel a bit better some days but the symptoms are always present. The good thing is since last summer they do not appear to have got any weaker.

Thanks again.

[Carys]

I am really pleased to hear that since last Summer things have not changed. I can see why you are searching for answers though, as you say, you seem to be able to be objective about some things being psychological.....but still something you know isn't 'right'. You didn't have a spinal injury of any sort whilst playing squash, compressed discs or anything ? (mind, I think you'd remember that :winks: Dangerous game squash, very easy to do something serious to yourself)

[victor jara]

Hi Carys One of the MRI dignosed L5 disc compressing S1 root nerve this was causing the symptoms (sciatica) in my legs. I have also no muscle atrophy in legs wich is positive as well. I think this injury was down to too much squash and running etc.

The other mri of the whole spine and brain was clear.

[Carys]

I think this injury was down to too much squash and running etc.

There we go, a dangerous game ! :scared10:

I wish you continued 'lack of any change', that is a very good sign. I know a few people with MND and their symptoms (even those with the slowest progressing form) are ever changing.

[victor jara]

I certainly believe a lot of my symptoms are result of chronic anxiety. I have a number of stresses in my life including looking after my daughter on my own for much of the week, money worries and many more.

The only thing that I cannot believe is psychological is muscle atrophy in my arms. I was looking at photos of me from a few years ago and it alarms me seeing the difference in my arms.

I do try now and stay away from looking at ALS/MND forums although I have had some good advice and support from the MND association.

[Carys]

...and it is definite atrophy rather than a loss of muscle from stopping playing squash and other physical activities ?

[victor jara]

The first neurologist I saw confirmed muscle atrophy in both arms. This was in June last year and said there was some weakness in left hand. He did a nerve study and emg which was quite painful but all were clear. Also did 2 mri of all the central nervous system which diagosed sciatica. On the basis of that he said 99% not mnd and thought my problems psychological, stress, anxiety etc. Prior to this Orthapaedic Surgeon had misdiagnosed Carpal Tunnel

I then asked my GP for a 2nd opinion in October. I had a full neuro examination by a motor nerve specialist at Kings Collage Hospital in London. I can't remmber what she said about the muscle atrophy but she felt the power and resistance in all my limbs was normal for a man my age. Again she did not think MND but could not offer any explanation of symptoms. This ressured me for a while till january and the difficulties with my facial muscles.

I know chronic stress and anxiety can produce a number of physiological changes, stress hormones etc but I do wonder whether I have some kind of auto-immune reaction or neuro toxin that has come into my body.