Informed opinions please.

[Sidney]

Hi. I have been on here before and have been experiencing symptoms for one year now.24 hour calf fasiculations,and ankle and foot weakness primarily.

I went from a BFS diagnosis by the best Uk neurologists to 'sensory-motor-autonomic polyneuropathy'.

This was after a recent EMG showing acute denervation in my feet.

In the meantime I have breathing problems and chest muscle wastage which are being investigated.

My problem and question is can they have it wrong? I have so many crossover symptoms with ALS/MND and I have heard so many times about people being mis diagnosed.

My other question and please bear with me is can permanent chest tightness be indicative of early breathing problems?Mine feels like someone is sitting on it all day.

I already waken at night frequently breathing very fast.

I am aware of the anxiety issue and can't deny it.Who wouldn't be anxious with the threat of this horrible disease hanging over them?

Which is also why hopefully I am posing my questions respectfully to people who either have this disease or have seen and supported someone with it.



However I am a usually sensible 57 year old Grandfather and can put things into perspective.

I post because I value the counsel .Hopefully you won't dismiss me as just someone with anxiety.I do have recognised symptoms.

Thanks in anticipation.

 

[Nikki J]

Hi
You reported the breathing and chest muscles wastage in March on your first thread and had an appointment scheduled for follow up. You say it is being investigated.

What do your doctors say? Do they see and confirm chest atrophy? What tests have you had so far and what were the results? At my clinic they check breathing regularly with a handheld device. I am sure if someone complained about breathing they would do that test. Have you had that? What about formal breathing tests? Sleep study?

The permanent chest tightness does not sound like early MND breathing problems to me or the breathing fast at night. Not what my family members have reported.

Anxiety could be an issue but have they checked your heart and for sleep apnea?

 

[Sidney]

Hi Nikki. My fault for not providing enough information. Sleep study indicated Apnoea and possible CPAP which I'm resisting.FVC and sniff test were ok-average but not low.I can deal with the waking at night but the permanent chest tightness worries me something is up with the diaphragm although I suppose FVC and sniff indicate otherwise.

My feet denervation is progressing and I have Pes Cavus.All this is new after a year.Never had any of these symptoms. Also have really really tight painful Achilles.

There is a possibility and its being investigated that Ciprofloxacin I took for Prostatitis could have caused nerve damage. my fear is all the crossover symptoms with Als.

Thank you for your time.I really appreciate it.

 

[Nuts]

Sidney, why would you resist the CPAP if you have sleep apnea? Sleep apnea is life threatening. If you are concerned about your health, take your physician's advice!!

 

[Nikki J]

Nerve damage from cipro does happen. Sleep apnea confirmed? As Nuts says take the CPAP for goodness sakes! It will likely solve the waking up problem and you will feel much better overall.

Your ok breathing tests along with everything that has gone before should take MND off the table. It makes no sense to worry about something tests say you do not have while ignoring a serious and diagnosed problem.

You did not answer my question about the doctors confirming chest atrophy?

 

[Sidney]

Hi Nicki I am seeing doctors re chest atrophy this week.Im wondering if external wastage is replicated internally and is causing the tightness. Regarding CPAP I know I know.Just not sure I can sleep with a mask but I'm going to have to try aren't I?

 

[Sidney]

I suppose when I accrue all my symptoms its hard not to see Als? Fasics,denervation,breathing? I feel the jury is out with the Neuros and they're waiting for progression.

 

[starente15]

If you have trouble sleeping with a mask, there are other alternatives. I have sleep apnea and use a dental device that assists in keeping the airway open. Look into some other options but take care of it. Very dangerous!

 

[Sidney]

Thank you Christine. I got a pro sleep gum shield and am trying it

 

[Atsugi]

Hi again, Sidney. As far as ALS goes, it seems nothing has changed from our perspective. Whatever is bothering you, it isn't ALS.

You've got good access to good doctors. Suggest you trust them.

I also cannot sleep with a mask on. I've decided to die early, rather than wear the mask.

 

[Sidney]

Thanks Mike! Presume you're kidding?!

 

[Sidney]

What do you think points away from ALS Mike?

 

[Atsugi]

Nope. Everything we do is a choice with consequences.

You have a history of poor communication with your doctors, so I think you really don't know what they're thinking. You need to ask.

Not sure if you worded this correctly: "I suppose when I accrue all my symptoms its hard not to see Als?"

Actually, when we look over your symptoms, all accrued over the past year, it IS hard to see ALS. It's just not there.

 

[Sidney]

Thank you Mike. Hugely appreciated.

 

[affected]

Sidney, all I can say is you have now posted here 48 times on multiple threads over a year and you do not have symptoms of ALS. No matter how you convince yourself.

To be honest, we have been very kind to you and answered you over and over.

With ALS you do not feel all this stuff - your chest issues are not ALS. Get the CPap for goodness sake and sort your issues out. You truly don't belong here.