Advice / reassurance about symptoms

[Ellie]

Thank you so much for giving us the update Carrie.

Hopefully your conditions will improve with treatment.

I wish you a long, happy life!

Take care now.


Love Ellie.

[Carrie]

Hello everybody,
I just thought I would update you all , out of respect and gratitude for the help you offered in what was a difficult time for me.
After many scans etc I had NCS and EMG. These showed 3 different herniated discs in my back and a trapped spinal nerve, all of which account for my walking difficulty.
I was also referred to an ENT specialist who diagnosed me with Vestibular Migraine, which accounts for balance/ dizziness issues etc.
My twitching was due to a combination of low B12 and Vitamin D.
Thank you all so much for offering support despite your own very difficult situations, I really am truly grateful. X

[Ellie]

Hi Carrie,

I’m glad you’re somewhat calmer following your appointment - what did the Neurologist say?

I presume you’re having an EMG test as well as an NCS? (An NCS detects a problem with the nerve, whereas an EMG detects whether the muscle is working properly in response to the nerve's stimulus)

To answer your questions and assuming you’ll have an EMG:

The test picks up any abnormalities and yes, the Neurophysiologist can determine if the results are suggestive of a motor neuron disease.

A diagnosis of ALS/MND is not given lightly - there are criteria to be met before it’s given. So, whilst nobody is infallible, it’s highly unlikely for someone to be incorrectly diagnosed with an MND and much more likely that someone is left without a diagnosis while further investigations are carried out to determine what is actually going on.

When is the appointment?

All the best.

Love Ellie.

[nunhead_man]

Hi Carrie,

Fasiculations in muscles are created by all sorts of reasons, not the least in my experience when I am fatigued from exercise and muscles then shake and throb like nobody's business!

There are other causes including having too much caffeine (I know that one) and the effects of other drugs.

And as Ellie has said above, MND never shows fasiculation without muscle weakness

[Carrie]

Having seen a neurologist today regarding my symptoms I feel a little calmer although still obviously don’t have a diagnosis.
I do have to have nerve conduction tests and although I am not thinking I have MND I do still have all over fasciculations. Can I ask if anyone knows how these tests know which fasciculations are due to MND or due to other causes. Is there a way that you could be diagnosed wrongly with MND because of fasciculations?
I appreciate this may sound like a naive question and I in no way intend to offend anyone. Thank you

[Carrie]

Dear Ellie,
Thank you for your further reassurances. I'm in awe of you all offering support . Thank you.
Love Carrie xx

[Ellie]

I've just read that another member has been diagnosed solely on the basis of twitching.

Carrie, I can assure you that nobody is diagnosed with ALS solely on the basis of twitching, no matter what you read.

You should be reassured that you have been examined by a Neurologist and you have no clinical weakness - great news!!

Love Ellie.

[Carrie]

Thank you for your reply Debbie,
I'm afraid I've got myself into a bit of a state as I've just read that another member has been diagnosed solely on the basis of twitching. My twitching is all over and visible. I have however just today had a neurological exam ( unrelated to this matter ) and all my strength tests were fine. Am I worrying unnecessarily, given the other members diagnosis ? I'm so sorry to burden you all with my worries. Thank you. X

[Deb]

Hi Carrie and a warm welcome to the forum from me. In the nicest possible way I hope you are a temporary visitor on here and that you get some answers to explain your symptoms soon.

Waiting to see consultants and for the results of tests is so stressful so I hope you have not a long wait to see a neurologist. It must be extra hard if you live on your own and have noone to share your worries.

Take care of yourself,
Love Debbie x

[Carrie]

Hi Terry,
I know you are right, certainly about the stress. I suppose the problem for me is that I have no knowledge of how MND does actually start and have therefore jumped to conclusions/ catastrophised.
Thank you for taking the time to reply to me. X

[Terry]

Hi currie and welcome to the forum,

Whilst some of your symptoms do occur with Mnd, it just doesn't start like that.

Vitamin deficiencies and stress can cause many problems.

Best wishes, Terry

[Carrie]

Thank you for your kind suggestions Lynne, I will take your advice.
It's very hard being alone with all that's going on. My main concern is really the muscle twitching and heavy legs as I'm frightened this could point to MND, but then I have all the other symptoms too. I don't think I have clinical weakness, but I'm not really sure how that would manifest. I guess being isolated is making me overly anxious...
You are genuinely so kind to respond, I appreciate you taking the time. X

[Lynne K]

Hi Carrie, I agree with Ellie. Your symptoms sound very worrying but not like MND, I hope that the Neurologist that you see will find out what’s happening soon. I’m sorry that you are alone. I’m no specialist so this is just a suggestion: if you can’t get out because of mobility problems ask your GP to refer you to your local services for walking aids and ideally the local wheelchair services, Maybe get some counselling too. Not having somebody to share your concerns with must make you feel alone and vulnerable. Take care, Lynne x

[Carrie]

Ellie,
Thank you so much for finding the time to reply to me, I live alone and don't have anyone / any family to share my concerns with so I really appreciate your response.I've just got myself into a very negative mindset, mainly because of the twitching.
Sending you all love, what an amazing resource you have built. X

[Ellie]

Hi Carrie,

Sorry you have all those symptoms but they don't sound like MND symptoms at all.

Hopefully the Neurologist will quickly get to the root of your issue.

Best wishes.

Love Ellie.