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View Full Version : Desperately Scared About Motor Neurone Disease



katya_1978
11-07-16, 07:28
So about a week ago I noticed a slight weakness in my right hand, this was quickly (within a day) followed by the bottom of my thumb on both hands starting to twitch (along with feeling my left hand feeling weaker). I've had a few twitches elsewhere on my body but the vast majority of them are on the thumbs. They're also kind of spasming and aching quite a bit.

I had an MRI on my head (for constant headaches) the other week that came back clear, but these new symptoms shave me convinced that I have MND/ALS and am already planning my funeral! I got 3 hour's sleep last night as I am so terrified (and have been dr googling like mad)

Can't stop crying.

---------- Post added at 07:27 ---------- Previous post was at 07:25 ----------

I'm a 36yo femake by the way.

---------- Post added at 07:28 ---------- Previous post was at 07:27 ----------

Female even!

Colicab85
11-07-16, 10:16
So about a week ago I noticed a slight weakness in my right hand, this was quickly (within a day) followed by the bottom of my thumb on both hands starting to twitch (along with feeling my left hand feeling weaker). I've had a few twitches elsewhere on my body but the vast majority of them are on the thumbs. They're also kind of spasming and aching quite a bit.

I had an MRI on my head (for constant headaches) the other week that came back clear, but these new symptoms shave me convinced that I have MND/ALS and am already planning my funeral! I got 3 hour's sleep last night as I am so terrified (and have been dr googling like mad)

Can't stop crying.

---------- Post added at 07:27 ---------- Previous post was at 07:25 ----------

I'm a 36yo femake by the way.

---------- Post added at 07:28 ---------- Previous post was at 07:27 ----------

Female even!

Been there. Had headaches for months and had MRI and it was fine but then started with twitching.

Didn't help that one of my best mates from school has recently been diagnosed with it.

The twitches do pass. mine have gone completely, I had twitches in my face, arms, neck, legs, arse etc. It goes.

katya_1978
11-07-16, 16:44
Thanks for the reply Colicab85 - the twitches seem to have calmed a little but still have full on weakness in both hands and arms. I'm on Ranitidine for reflux and am hoping it's just another weird side effect of it (I've had a few). It's good to know that you've experienced similar and have recovered though.

Colicab85
11-07-16, 16:57
From what I know my my friend, it generally starts one side and then migrates over.

The fact you have it in both hands suddenly is unusual. Also, again from my friend. His wasnt a perceived weakness, like it wasn't like he could do the things he usually did but with a little more difficulty. He basically just stopped being able to grasp things etc and once it happened, it didnt return at all.

Lifelonganxiety!
11-07-16, 17:34
This is pretty much one of the most common fears with anxiety sufferers (as far as I've seen anyway).

Look into something called Benign Fasciculation Syndrome. FAR more common and much more likely.

Twitching is one of the last things that happen with MND, it doesn't present like that.

katya_1978
11-07-16, 17:53
Your poor poor friend Colicab85 - how utterly terrible for him. Thanks Lifelonganxiety! - did look in to this but thought that as I had this weakness (which I'm now thinking is maybe a perceived weakness or just an unusual feeling caused by the ranitidine) that it wasn't that, but anxiety is a multifaceted beast isn't it, the list of symptoms seemingly never ends!

Lifelonganxiety!
11-07-16, 18:55
It's true - anxiety can be blamed for literally every symptom that sometimes it's hard to believe it.

But it does sound like your weakness is perceived. Like the other poster said, if you have weakness you'll know it. The mind is very powerful and can play tricks on you!

katya_1978
12-07-16, 10:08
So today the symptoms are even worse and seem to be spreading (i.e. the weakness is all the way up my arms, I'm dropping things and my legs are extremely fatigued too). I saw the GP in the end yesterday who checked the strength and reflexes on one hand and said they were fine abd suggested coming off the ranitidine, so I didn't take one last night - so how can it be worse today?!

Using all my willpower not to rush off to hospital.

Colicab85
12-07-16, 10:37
So today the symptoms are even worse and seem to be spreading (i.e. the weakness is all the way up my arms, I'm dropping things and my legs are extremely fatigued too). I saw the GP in the end yesterday who checked the strength and reflexes on one hand and said they were fine abd suggested coming off the ranitidine, so I didn't take one last night - so how can it be worse today?!

Using all my willpower not to rush off to hospital.

Honestly, I implore you not to! I went to hospital about 4 times in 2 weeks when I was at my worst (mine was brain tumour, aneurysm and then MND) and nothing came of it.

Mine was related to my mouth and throat and it was all definitely anxiety. I can't tell you not to, I've been there and it's absolutely awful.

If you do go to the doctors then it would be good to discuss anxiety etc (unless you already have done).

I really want you to get through this. :bighug1:

katya_1978
12-07-16, 12:42
Thanks, Colicab85, I'm trying to put it in to perspective - it's very hard! Have got a docs appointment this afternoon so am holding on to that. I just wish I gad some form of machine that could definitively say - "it's anxiety, it'll all be fine".

Colicab85
12-07-16, 14:57
Thanks, Colicab85, I'm trying to put it in to perspective - it's very hard! Have got a docs appointment this afternoon so am holding on to that. I just wish I gad some form of machine that could definitively say - "it's anxiety, it'll all be fine".

No worries.

I've seen from a previous post of yours that you are worried about meds, and its a perfectly legit one. I tried to hold off them for a long long time but it got too much so I went on a small dose of Sertraline and its sorting me right out!

The side effects have been very manageable too. I would suggest you explore it.

geezer46
12-07-16, 17:59
I read that if you can walk on tiptoe and on your heels you are o/k and if you can pick things up you are o/k mnd is about failure once you cannot do them it could be mnd,but if you cannot pick something up one minute but you can the next you are o/k.I had this fear myself not long ago so i hope this helps you i am not a doctor but this is what i read.

katya_1978
12-07-16, 19:21
Guess what I did straight after reading your post geezer46 :)

I will speak to my doc about Sertralibe Colicsb35.

I thought I was feeling a bit better so cancelled my emergency appt earlier (also had to take daughter swimming - she already missed last week so was feeling guilty), I will make another appt with my usual GP when she's next in on Thursday. Needless to say I am feeling worse now (Sod's law) and am trying to take comfort in a glass of red wine.

Colicab85
12-07-16, 19:37
Good! Glad you cancelled!

Talk to your GP about CBT and Sertraline. Really helping me.

Also, I find the Headspace App really useful. Just take 10 mins out your day for some Mindfulness and it does make you feel more relaxed.