Not a Clue

[Suefromwakey]

I have previously written on here about my husband possibly having MND - nearly two years down the line since his first consultation - a few weeks back he was told it might not be MND but something called Myositis............so did all the research, as you do, on that and to be honest it geed him up a bit in the hope that this isn't quite as bad as MND, he's now received a letter saying they don't think he's got Myositis but Chronic Axonal Neuropathy - this is just getting daft now,

How are you supposed to deal with this..........he's still awaiting his "2nd Opinion" appointment at Leeds MND centre - do they just concentrate on MND or will they in fact be able to confirm this new "Suspected" diagnosis ........... of course there are several variants with this but basically its the immune system attacking itself

Anyone heard of this? anyone got it?

Too much to bear

Sue

[denise]

I don't know what to say other than this is getting stupid. But you know that. I know what it's like looking things up but what's the point if you don't know it's certain. ☹

[Ellie]

Oh my days Sue, what next will be pulled from the Tombola of Diagnostic Guesses??

Chronic axonal polyneuropathy is quite different to MNDs - it has sensory symptoms for starters. Has he had nerve and muscle biopsies yet?

The MND Clinic should be able to clarify if he has an MND or not. If they aren't in a position to confirm the diagnosis and say they need a wait and see period, they ought to say or be asked, what diagnostics and/or clinical evaluations don't quite fit.

I know Gary initially had a CIDP diagnosis, while similar to CIAP, it has differences too. I don't think people on this Forum would have CIAP - I have not come across any - there are probably forums for that condition or on Patients Like Me.

Any date yet for Leeds?

Stay strong.
Love Ellie.

[Suefromwakey]

Hi Ellie,
yes hes had several nerve tests and the muscle biopsy - that's what sent them down the Myositis route originally, it would appear that further consultation between consultants - my husband wasn't present - have probably ruled that out and now leaning towards this other thing,

No appointment as yet for Leeds - we might end up in full lockdown tonight - perhaps appointment will never come,

I hate the way these consultants use "throw away words" prepare for MND, or, might be Myositis, or, now this - I'm all for being kept in the loop but I don't think they know how crushing their throw away comments can be,

Living with this uncertainty is pants and that word Idiopathic - Cause unknown - it feels like something else to hide behind, god knows what I am going to do as his ability to walk is now bad and I've noticed his breathing is going downhill,

Ill have a look at the Patients like me - don't think I've seen that before

thanks

Sue

[Ellie]

He needs a nerve biopsy too, if he hasn't had one.

[Deb]

HI Sue,

You must be so fed up ( to put it politely!) With the uncertainty. It sounds like they have a different answer each week and its impossible for you both to move forward until you know what you're dealing with.

I attend the MND clinic in Leeds and i do find the care excellent. As far as I know they are still running during the covid crisis for patients who need an appointment. At the moment I have my appointments by phone but I have been offered clinic or home visits if I need them. Its not fair that this service is not available until you're in the system . The neurology department is in the same building at Seacroft in Leeds and I initially saw a different neurologist there before being referred to the MND team. I have everything I can crossed you hear soon but I would keep phoning to check.

Take care of yourself Sue,
Love Debbie x

[Suefromwakey]

Thanks Debbie and Ellie - Ellie what would the nerve biopsy show that the nerve testings didn't show please?

cheers

[Graham]

What did the gene test reveal? Obviously it can reveal many more disease categories than just MND.

[Suefromwakey]

Now that's something I don't think hes had.........how is that done Graham?

[Ellie]

what would the nerve biopsy show that the nerve testings didn't show please?

A biopsy can look at the nerve's myelin sheath, look for destruction of the axon, damage to the small nerves i.e. causes of the symptoms, which an NCS doesn't show.

It isn't routinely done but for query diagnosis cases, then more diagnostics need to be caried out.