I'm back :-(

[DaisyP]

So I posted here back at the beginning of the year when I had convinced myself I had MS, I'm back now having convinced myself I have ALS - or motor neurone as it's otherwise known..

I had an MRI and a full neurological exam back in March and got the all clear for MS I felt better for a while and my symptoms kind of went away. Well now they are back and my leg feels so so weak, not like I will fall over but like it could cramp? Well now I've convinced myself I have ALS and I can't get it out of my head :-( Sometimes I feel like I can't remember words and I can't pronounce words correctly? My grandad had the disease and so that worries me even more.

I know I have a low risk (I'm a 29 year old female) but I can't help but worry. Especially as I read ALS doesn't show up on an MRI. Please help :-(

[Carnation]

DaisyP, you have been given the all clear from the Hospital and they would have investigated you further if there was any doubt of a similar disease.
Can I tell you that Anxiety does have symptoms that you are describing.
I had a spell when my legs felt weak and achy and bouts of cramp. And, had the thing with the words; like I might say a word I didn't mean or forget the word in a sentence.
I know how you feel, because my Father has just died with Parkinson's Disease and it is really soul destroying. I think it has a huge impact on us to watch and live through this and is only natural that we have the fear of becoming like this ourselves.
The thing is, Life is not like that. My Mother got Cancer early in Life and for many years, I though I would too. I became paranoid about it. Well, I haven't and have now accepted that it might not happen to me.
If you have the all clear, you have to accept it. Live your Life of many years, keep that mind occupied with good stuff and keep busy with lots of things to do and you will start to feel better and enjoy Life more.:)

[DaisyP]

Hi Carnation,

I got the all clear for MS, I'm assuming they would have noticed ALS symptoms too?

I'm sorry to hear about your father. You are right, you start to worry this will happen to you.

I got over this health anxiety, can't believe it's back :-(

[itztraxx]

DaisyP,

Check out aboutbfs.com many folks there were concerned of ALS but in fact had Benign Fasciculation Syndrome. This site also has a great deal of what ALS is and isn't.I am not sure what your symptoms are to suggest ALS, but since you had the full neuro exam and it was clear I doubt it is ALS.

[Serenity1990]

As much as BFS probably a good description of what's going on, most agree (aside from the admin on aboutbfs.com) that it's just a fancy way of saying neurological physical manifestations of anxiety.

Whatever, Daisy you don't have ALS as your neurological exam was normal. Once you accept within yourself that you don't have a neurodegenerative disease you'll begin the path to recovery. You were on that path, and like many of us you've deviated from it probably with the help of Dr. Google. Every time you step off the path you've got to go right back to the beginning again.

[DaisyP]

Hi Serenity,

Good to hear from you!

Thanks for the reassurance. I know, that's what makes me so mad with myself for doing so well and then falling back again.

Today i have a cramp type feeling in my arm and pins and needles in it too. I am so fed up of this, goes away and then it comes back again but today because I am giving it attention it has come back and I cant stop thinking about it.

How are you these days Serenity?

[Serenity1990]

I'm not great, but thanks for asking. Just got used to the constant cramp in my ring finger then that disappeared to be replaced with facial parasthesia and a buzzing left foot. I know I'm not fitting the MS picture as three neuros (all very highly respected in their field at leading research hospitals) have all said so, I've had a negative MRI and bloods are free of autoimmune and inflammatory markers. However, nobody knows what is going on, and I'm getting sick of the constant plethora of symptoms. :(

[DaisyP]

Sorry to hear you are not great. I feel your pain, I really do.

My symptoms come and go on a daily basis & they went away for a while and I felt great - especially after seeing the neuro but now today they are really bad and it's worrying me again. My throat feels incredibly tight too but I am sure I have had this feeling before. I think I am thinking about it too much today. I am really bunged up nasally and I think this is what is causing my tight throat yet my HA side says it's MS or ALS starting!

I do think it's worse the more attention you pay to it, my neuro said that and not surprisingly my symptoms disappeared after seeing her so I know a lot of it was because I was thinking too much about it.

I get the buzzing too, normally in my back and my leg but that moves, it's a strange sensation isn't it?

I do think - and my neuro said this to me too - that some people just have incredibly sensitive systems/biological make ups. She thinks my symptoms was triggered by my course of very strong IV and oral antibiotics I took and eventually it will calm down, or she said you may have just been prone to it anyway.
I already suffer with Fibro so a lot can be put down to that & perhaps it's taken on another form to what it once was.
I also have tinnitus and I have done since I was a child - not caused by music or loud noises but the ENT Dr said I am just an unexplained case.
I personally think all of my problems are related - I must have a very very sensitive nervous system which causes everything to go into overdrive. A reason for unexplained tinnitus can be stress/anxiety related (I had a terrible childhood) and it sets off the neurons in your head, they misfire and go haywire. This could also be the case for the rest of my nerves which the Neuro described as 'on fire'. I therefore do try and not get worked up by little things any more in the fear it will set something else off ha ha!

You could be the same as me - very sensitive - there is so much we don't really know about the brain & my neuro said there is so much they don't know either & she sees many many people with unexplained neurological problems everyday.
I hope this has somehow reassured you - aren't we good at reassuring each other but just not ourselves?!

I do feel better today - I am going through a busy time at the moment and I think sometimes I can keep my anxiety in check and sometimes I find it harder :(

[Serenity1990]

Yeah one of the neurologists did say to me that what I'm experiencing is something that's quite common, there's no name for it but it'h basically a badly understood reaction to prolonged stress. Which makes an awful lot of sense to me.

Unfortunately as I was an academic when I had to take a couple of months off it meant I had to wait until the next academic year to restart what I was doing, so I've got day after day of little to think about but these awful symptoms these days. Which isn't great! Lol

[DaisyP]

I reckon stress has a lot to answer for Serenity, my stress levels are high today and guess what? So are my symptoms!

[Serenity1990]

This thread might be of some use to you - it has been to me!

http://www.aboutbfs.com/forums/viewtopic.php?f=8&t=16549

I know you've not had a BFS diagnosis but it's the same general gist. :)