Have been told possible MS or ALS - scared

[Becca26]

Hi all,

I have read all the stickies so I hope I'm clean to post has have ruled out hypochrondira and or anxiety

Started experiencing on and off flank pain back in Oct 2011 that the docs treated with meds for suspected stomach ulcer. It seem to relieve it.

Then in december I had one tingly thumb and strange crampy feeling in right bicep muscle, central stabbing upper back pain and intermittent front shoulder pain that my doc said could be a pinched nerve and to use a neck foam support and itll hopefully go away.

I used the foam suppport but it made my neck sore and instead of it going away the strange, charlie horse feelings in my right arm got worse and had began to feel the same feeling in right calf muscle.

I went to my doc last week and he did an urgent referral to a neuro who I was suppose to hear back from (whom I havent yet).

What now worries me is that in around 6 days it had gone from just being an uncomfortable strange crampy feeling in right arm and leg to being in all my limbs and an odd sensation in the centre of my abdomen. My right ankle feels weak and when I walk my legs almost don't feel like mine. My fingers feel stiff and almost swollen and when I try to put my hands on my hips my right wrist gives out.

I constantly feel like my legs have just been for a run and arms have just lifted weights; it doesnt let up, it feels like this 24/7. Also terrible back cramps.

Brushing my hair feels like my muscles have done a work out. I often get woken up in the middle of the night becaase the sensations and cramps and twitches are driving me insane. I also have this shaking feeling inside that feels like Ive had to much coffee that just won't go away.

Ive had all the bloods done to rule out any imbalances in my body and they're all fine, had a back and chest Xray, fine and an ultrasound of internal organs and they fine.

Doctor said today she suspects MS or Motor Neurone Disease and then told me not to worry. Ive been on the verge of a mental breakdown for weeks.

Is what I'm experiencing sound like ALS symptoms or something else? WOuld ALS progress this quickly in 1 month or am I going insane! Please someone say the latter!

My regards

Rebecca

 

[Bliz]

Hi,
from what I read you have not an EMG done and you were told its probably ALS or MS? Wow, that must be pretty good neurologist..Anyway, what is your neuro exam, reflexes, strenght..? Is there any reason for her to suspect these diseases except for pain, cramps and twitching?

 

[Becca26]

I've been told this by my GP. My strength is fine during strength testing.i suspect theres a change because lifting my toodler is becoming difficult. She told me from the symptoms I've described as in the muscle fatigue and the cramps/twitching and with bloods being fine that those options were her suspicions. She has sent another urgent referral to the neuros here and was going to call them to get me in. Does this not sound right? Would my GP not be in a position to give her suspicious at this point in time with my current symptoms? I asked her what could this be and those were her answers.

 

[Bliz]

Lol, so it was your GP who told you its either ALS or MS and not to worry I think this shows enough that she does not know anything about these conditions except that there is twitching and cramping involved, not mentioning its highly stupid and unprofessional to mention these without any objective evidence (EMG, MRI..). Even if she was in the position to tell you, there are a lot of more conditions that can cause that (like MMN, neuromyotonia, spinal cord issues at upper levels, GB syndrome, polyneuropathies...).
Only neurologists or even specialist in MNDs is the right one to tell you it might be ALS or MS. Get an EMG, only then they can say what it can be with some degree of certainty.
Anyway as you know, with ALS there is marked weakness, in most cases long before you notice any twitches. And it is not that fast. I am twitching nearly 5 years, everywhere, and do not have ALS.

 

[Kitchener]

Hi Becca

It sounds like your GP is either a well meaning fool or a malicious sociopath. I wouldn't pay too much attention at this stage (easy to say I know, but many on this board have been through it). Even her differential is odd, to say the least. There is an ocean of difference between MS and ALS. Channel your energy into securing an appointment with a neurologist. Break down doors and make a nuisance of yourself until someone agrees to see you. He/she will begin with a clinical examination. Depending on whether the neuro believes that you have a neurological problem (and he might not) you will most likely be sent for an MRI and/or an EMG. Only at this stage is it even appropriate to consider conditions such as ALS. Certainly the symtoms you have described above could be (and most probably are) explained by a ton of other things, not ALS (remember it is a very rare condition). My own GP has been practising for over 30 years and until I came along he had only seen one suspected ALS candidate in his entire career. Please let us know how it turns out.

Kitchener

 

[CGAR]

Rebecca,
I know a bit of what you are feeling.

It will take awhile for the mountain of tests to be evaluated.

Until you get solid results, it is unfair for any professional to give a confirmed answer.

Right now, anxiety is your biggest enemy. It will make any twitching that much worse. Well that, and surfing all these sites.

While you are searching here, you may be missing a beautiful sunny day outside, or coffee with a friend, or even a nice walk by the ocean.

Point is if you end up having something you have no control over, you really dont want to give up the good days surfing here.

Its hard, but try and find something to occupy your time with and stay positive.

Cheers,
Casey

PS Nobody wants to be on this site, but if you really need to, its a great place!

 

[TedH5]

To answer your questions typically things do not progress as quickly as you are describing. I would not be suprised if your Neuro decides to do a spinal tap to test for some type of virus. Often they can have a much quicker impact on your CNS then ALS. Of course I am just speculating. Best advice is to allow the Dr's to do their job. Good luck.

 

[Becca26]

Thing seems to be changing so quickly with whatever this is. My intital symptoms seem to be similar to ALS but it seems to be moving swiftly. I seem to have quite uncomfortable cramps in my thighs, fingers and biceps and uncontrollable twitching of my calves when im at rest. I'm still waiting to hear back from my referral to a neurologist. Do all these symptons within a month spreading from 1 arm t all limbs seem to swift for ALS?

 

[Alyoop]

Hi Becca
Just realised you are from NZ as well. As the others have said your GP was a total prat telling you you could have either MS or MND. Its way too early to speculate and he is not trained to make those speculations either. Both illnesses take time and exhaustive testing to diagnose. There are 100"s of neurological disorders, so you will just have to be poatient and wait for the neurologists opinion. Hard I know, especially when you have to wait for the appointment. Arte you going through the hospital or private?

Aly

 

[kiwisally]

Becca, I found Wellington Hospital 1st rate. Care was a little dodgy (similar as you've experienced) until I got to Wellington, hope you get there soon.

 

[Becca26]

We've been battling with going pubic at the moment; had two urgent referrals from GP to neurologist in Palmerston North but to no avail as yet. Two GP's have said they will contact me back and they haven't.

We would go private but for costs reason's I'd prefer to not use up all my parents retirement funds!

I'm only 26 with two children aged 6 and 3. I cannot beileve our health system here in NZ; it's disgraceful.

I know the likihood of this being MND/ASL is very low but with cramps in my arms and legs, stiff fingers, twiching it's hard to ignore.

All I had was a twiching thumb which then went to bicep of same arm and now its in leg on same side. I'm very scared, all I want is to see a neuro for them to say "Unlikely it's ALS/MND" and start to look at other possibilites because when I search my symptoms I don't get much else other than MND's. Has anyone experienced such rapid progression of symptoms, from none to many in less than 4 weeks?

Becca

 

[trfogey]

I'm very scared, all I want is to see a neuro for them to say "Unlikely it's ALS/MND" and start to look at other possibilites because when I search my symptoms I don't get much else other than MND's. Has anyone experienced such rapid progression of symptoms, from none to many in less than 4 weeks?

Lots of folks with benign fasciculation syndrome (BFS) have had the rapid progression that you've had. Maybe you should try researching BFS and BCFS (benign cramp-fasciculation syndrome) for a bit while you wait for your neuro appointment. Try a b o u t B F S dot c o m.