Your instincts please (much appreciated).

[Sidney]

Hi and thank you for this forum.

In my sheer panic days I was a regular poster ands always treated courteously and kindly -even the tough love I was given was correct and well intentioned..

I am still in limbo land. Diagnosed as we stand by an excellent UK mnd/als centre with bfs and polyneuropathy plus sleep apnoea and pes cavus!

None of which I had 18 months ago.

I had fibs and sharp waves in my legs on Emg and they heard the 'denervation sound'.

Since then the fasics have gone crazy and my breathing at sleep is awful.

I go back in August to the respiratory specialist and have another Emg in September.

It is true to say that as of now after 18 months of symptoms I have no clinical weakness.

Fasics were my first symptom and I had sensory action potentials on Emg indicating sensory involvement. This led the neuro away from Mnd/als.

However he then told me of a patient like me who he had been seeing for 6 years who had a great deal of denervation but only slight foot drop .He had 'a motor neurone disease but not THE motor neurone disease.

He also told me of a patient diagnosed in December who was now quadriplegic.

So I undrstand how variable it can be.

I suppose the question to you and I appreciate how tiresome it may be is 'does any of this sound like als?'

My neuro is giving me the impression the jury is out as is the respiratory specialist.

Of course I listen to them but you all have vast and impossibly sad experience of this disease so i hope you won't mind if I ask you?

Thanks in anticipation and sorry for the long winded post.

And Mike et al thank you for the replies in the past.

Cheers



Sid.

 

[Nikki J]

Looking back it seems you were to have a follow up EMG in April or May and then a neuro visit.

Did the EMG show any change from the previous one? If so, what?

What did your latest clinical exam show? Do you have clinical weakness, abnormal reflexes or spasticity?

Are you using your cpap? What do mean your breathing at sleep is awful?

You are worried about twitches and breathing, am I correct? As you know, twitching is non specific and you state you have a diagnosis of bfs anyway. About breathing you do have sleep apnea. Whether your diagnoses explain your symptoms we can't say

When you say your neuro and pulmo are giving you the impression the jury is still out are they saying this or are you reading between the lines? If the latter, ask them!

We can't second guess your doctors but it has been a very long time

 

[Sidney]

Hi Nikki

Thanks for the reply-much appreciated.

Last Emg didn't show progression from the previous one which I presume is good news.Still fibs and psw but same level as previous.

Exam showed no clinical weakness,abnormal reflexes or spasticity.

I'm using cpap but struggling with it. So sometimes I don't use it but have a sequence where I dream then wake up,dream then wake up all night.

Also hypoventilate.

Twitching is annoying and confined to calves and I understand non diagnostic.

The diagnosis is bfs plus polyneuropathy which I find a bit weird.

The neuro is definitely saying jury still out. His exact words were 'I'm determined to get to the bottom of this' and he's ordered a new EMG for September to see if any progression.

I appreciate it's been 18 months but I'm honestly confused.

What's you're opinion?

Thanks for your time.

Sid

 

[Nikki J]

I am apparently not seeing the whole picture as I don't see that you don't have explanations for everything. So what unexplained symptom is the neuro chasing?

For what is worth that does not sound like ALS respiratory dysfunction to me but rather inadequately treated apnea. You need to work with your respiratory people to optimize settings and perhaps your mask needs changing.

Your emg is stable which is definitely good news.

You can't really do anything about a further diagnosis ( if there is one) right now. I would be enjoying my family and working on the apnea issue which sounds like it has a lot of potential for improvement

 

[Sidney]

Thanks Nikki,

I think you're right about mask and am going back in August.

The unexplained symptoms are muscle wastage in feet(pes cavus) denervation on Emg and fasciculations which have been constant for 18 months.

This allied with the sudden appearance of apnoea is what the euros are chasing.

I like them am finding it difficult to separate out all these symptoms as they all began at the same time.

A diagnosis of BFS AND polyneuropathy doesn't ring true to me. and the thing that seems to unite all my symptoms is Als.

I hope this makes some sort of sense?

Sid.

 

[WendyWooG]

Sidney
If those diagnosis explain your symptoms I don't understand why it doesn't ring true for you that you could have both bfs and polyneuropathy.

It is quite common to have more that one thing going on with your body when it starts to go wrong.

I was diagnosed with lupus sjogrens and fibromyalgia 17 years ago. It took a lot of investigation to identify each one separately as it was all going on at the same time in a very short space of time after having a severe bout of flu. It took years to find the right balance and manage those conditions properly.

You really need to get your sleep apnea under control, be a pest about getting your mask right and really persevere with using it regularly. Once it's properly managed you can be sure the symptoms from that aren't getting in the way of further diagnostic process.

Wendy

 

[Sidney]

Thank you Wendy you make a good point about a variety of conditions being possible.

I suppose I feel that the thing that unites them is ALS .

Frankly my snip and fvc have been good which indicates muscle weakness may not be the problem-at the moment.

I have read however on this board and others that apnoea often precedes muscle weakness in the diaphragm?