MND/ALS fears

[pocketnurse]

Hi there, I am new to this however very sadly not knew to panic and sever anxiety. I am a healthcare worker so should know better but sometimes my job makes it worse. I can cope and deal well with everyone elses problems but not my own.
Long story short- for years I have had various ssris and have had the most horrendous stress over the last few years in my life. I recently started reducing my ssri. After googling for some info on withdrawal and side effects i radomly came accross symptoms of motor neurone disease ie muscle fatigue (i feel so anxious I physically hold myself rigid and fasiculations (muscle twitches). My fear is so out of control I cant sleep or eat and have awful thoughts about dying and leaving my children. Although i realise the statistics suggest only about 2 in 100,000 people get it usually between 50 and 70 and it is thought more common in men i am convinced. My GP did a very quick nero test and said i didnt have symptoms but it just wont reassure me. I am very depressed right now and my anxiety is beyond belief.

Any advice anyone.
Pocketnurse xx

[Annie0904]

I would trust your doctor, if he was in any way concerned he would have sent you for further tests. The symptoms you have are classic anxiety symptoms xx

[nomorepanic]

Hi pocketnurse

We just wanted to welcome you aboard to NMP. We hope you enjoy your stay here and get all the support and advice you need.

Please take some time to read the website articles on the left as well for loads of advice and tips.

[Jules147]

https://docs.google.com/viewer?a=v&q...2zQImeLsaY1TVQ

---------- Post added at 18:29 ---------- Previous post was at 18:21 ----------

When I discovered fasciculations on my calves I was petrified and started doing checking behaviours that involved strength tests and exercising my calf muscles. I was even more frightened when I found that I could do slightly more calf thrusts with my right leg than my left! My arms and legs also sometimes felt "weak."

After a couple of days of checking behaviours exercising my calf muscles several times a day they were quite sore. After a week though they were stronger, firmer - and identically so.... In the meantime I googled fasciculations and discovered aboutbfs.com. I didn't find it particularly reassuring though because it seemed to suggest that ALS would have to be eliminated following nerve tests and a trip to the neurologist. This idea scared me even more and set off all sorts of "What if....?" thoughts.

It is an American site and there seems to be a culture within US healthcare that all serious illnesses need to be eliminated rather than simply assessing the risk of serious illness given various factors including signs, symptoms, age, gender etc.

The good thing about the NHS/Lancashire Teaching Hospital link above is that it suggests that further tests are really not necessary in most cases,

"Neurophysiological examination (if required)....." That was a lot more reassuring. I went to see my GP and told him about them and my fears. He did some basic tests that included shining a torch into my eyes, some basic coordination tests, shook his head and said,

"I don't think you have Motor Neurone Disease."

He checked me for Carpal Tunnel Syndrome though because it runs in our family and suggested nerve conduction tests FOR THAT REASON ONLY because one of his tests, of my right wrist was inconclusive. He also said that the test was not a necessity so I declined it. Neurology was scary and I really didn't want to go there.

This was March last year, so 20 months ago. The fasciculations come and go, they are more noticeable the morning after a few evening drinks or if I'm a bit stressed out about something. They don't frighten me anymore and there is no reason why they should frighten you.

[pocketnurse]

Thanks Jules
what makes my anxiety worse is that for 5 months of regular visits to a GP with my then 7 year old daughter who was in my opinion showing some signs of a neuro problem he diagnosed migraine however it did turn out that my daughter had a tumour on her brain stem. My daughter is now 17 and healthy with no lasting effects. Obviously I dont see this GP any more but it has done a lot of damage. I am going to check out the link and you are correct as most of the scaremongering on the internet comes from the US.
Ironically I always advise people not to turn to Dr Google for advice unless I think it will be helpful but never cause them harm so why the hell did I do it.

Thanks for your support its so appreciated.

[ElizabethJane]

Hi Pocketnurse I don't suffer from health anxiety but I do have first hand experience of MND. My Mother died of the disease. I don't want you to worry about getting MND as it is still a very very rare illness but I understand where your anxieties are coming from. Has your GP suggested some CBT? I have had hypnosis which helped to put the fear into perspective. I am in the process sorting out life insurance for myself as I have a son of fourteen. I don't think I would get the inherited type of MND as this has an earlier onset. The sporadic type (which is what my Mum had has a later onset). I am fully aware of the illness but have a lot of living to do. I also intend to write a living will of my wishes should I develop a life limiting /threatening illness as I have a fear of the actual process of dying.The life insurance would exclude MND and mental illness so probably not any good anyway! EJ

[pocketnurse]

Hi Elizabeth,
I am so sorry to hear of your mums illness, you are correct in thinking that you are very unlikely to develop the inherited type as it is my understanding that this is even more rare. Having children changes your attitude on everything really I know. You sound like an incredibly strong lady and I am very grateful for your reply especially as this subject must be a very difficult one.

Sending love to you x

[fozzy is crying]