Myositis

[Suefromwakey]

Does anyone have any knowledge of this please?

My husband has been suffering for more than a couple of years and was originally told to expect a diagnosis of MND.....he's seen the consultant today who now says shes not ruling it out completely but because he still has upper body strength (to a degree) his speech is not affected, he can still swallow, shes now sending for tests on Myositis.

This is apparently a 1 in 1000,000 rare auto immune problem - there are several different types.

Has any one of you ever had this scenario before finally being diagnosed with MND - seriously he cant walk now and fell off his scooter in the hospital car park today and I had to get the ambulance peeps to come and get him up..........I don't think he will now go out in the car again - his confidence plummeted.

I've been saying to him all along if this ends up not being MND they may have wasted too much time to get him any kind of treatment......the damage I fear has been done.

He remains under the Neurologist.

I really do not know what to think

Thanks

Sue

[GaryM]

Ever feel like you can't win, Sue? Have you looked here? https://www.myositis.org.uk/

[Suefromwakey]

Yes Thanks Gary I have been on that............at the mo I cant find a forum like this one but Ill have another in-depth look tomorrow.....

Cheers

[Barry52]

Hi Sue,

Whilst I am not qualified medically and I only offer my opinion your husband may have the rare form of MND known as primary muscular atrophy PMA. This subtype condition affects the lower limbs. Many neurologists are not specialists in MND unless you have been diagnosed in one of the 22 MNDA clinics. For your hubby to go this long without a firm diagnosis is unfair, especially as he seems to be prone to accidents. Can you request a referral to a different neurologist?

Best wishes,
Barry

[Suefromwakey]

Hi Barry, that's probably doubtful........April 2019 he had a "Locum" who we then never saw again.........Wakefield it appears didn't have a Neurologist at the time, its been a catalogue of errors and admin cxxk ups to be honest, he's been under what is now our New Neurologist since her appointment last year.

He's had the blood tests this morning, as if he hasn't had enough of them, but now she says she will speak with some higher up and will see him again in 2 months time, she promised Sheffield and has now back tracked.............in some respects, even after today's fall, he's geed up a bit and I don't want to put him on a downer,

I seriously don't know what rights he has?...............do you know what we can "demand" when he goes back?

Thanks

Sue

[Ellie]

Hmm Sue, Myositis does ring a bell. I seem to remember some years ago that someone here had a misdiagnosis involving Myositis, for the life of me I can't remember which way round it was, sorry. Admin deleted thousands and thousands of older posts earlier this year, so we've lost lots of precious information.

Myositis causes muscle damage, MNDs don't, so hopefully a muscle biopsy and repeated EMG test can shed some light on what is causing hubby's issues. Is the Neuro a neuromuscular specialist? If not, that's what he needs and deserves.

Sorry Barry but I'm going to disagree with you over PMA only affecting the lower body - it affects all limbs but only affects the lower motor neurons, so maybe that got you mixed up?

Love Ellie.

[Deb]

Hi Sue,

I am no medical expert and I'm sorry I don't know anything about myositis.

I am sorry there is still uncertainty over hubby's diagnosis.. it must be so stressful for you both even now you have hope it is something else. I was referred for a second opinion after I had been told it was strongly suspected MND and my head was all over the place! I was frantically googling alternatives and undergoing repeated tests.

I have the PMA variant of MND . Like Ellie says it affects the lower motor neurones. The consultant patiently drew me lots of pictures to show me how this could affect me and it was likely to be all four limbs. I am fortunate that my swallow and breathing are not yet affected. I have no use of my legs but my arm strength is ok.

Take Care to avoid falls whist waiting for a firm diagnosis. Its so unfair on you both that you can't access the care you need for mobility issues whilst you are waiting.

Before diagnosis i saw two neurologists at Seacroft near Leeds. I don't know if you can request a referral but its not far from you.

Sending you big hugs,
Love Debbie x

[matthew55]

Off topic I know but I was kind of hoping that this forum would be my monument after I go. 🤨

[Barry52]

Hi Sue,

Ask your GP to refer your husband to Sheffield Hallamshire since you are under the care of Yorkshire district. I was in Lincolnshire at the time of my initial diagnosis and they referred me to Sheffield for a second opinion.

Ellie is right to correct me as I should have said lower neurones. I did say I wasn’t qualified lol.

Barry

[Banned]

I knew a fellow that had transverse myositis and he made a full recovery after treatment but as always, there is variation in the prognosis. It is a spinal complaint.

[GaryM]

...........

Sorry Barry but I'm going to disagree with you over PMA only affecting the lower body - it affects all limbs but only affects the lower motor neurons, so maybe that got you mixed up?

Love Ellie.

Showing my ignorance here but what's the difference between upper motor neurons and lower motor neurons. I'd assumed that upper controlled the arms and lower controlled the legs. Bit simplistic I know. Or have I completely misunderstood.

[denise]

Gary that's what I thought but what do I know

[Ellie]

I'd assumed that upper controlled the arms and lower controlled the legs. Bit simplistic I know. Or have I completely misunderstood.

Here is my explanation:

The Upper and Lower describes where in the body specific motor neurons are found, not to areas of the body they may or may not control.

UMNs originate in the brain and travel down to the brain stem or spinal cord, i.e. are confined to the central nervous system. They are responsible for the initiation of voluntary movement, the maintenance of muscle tone for support of the body against gravity, and the regulation of posture.

LMNs originate in the spinal cord and is a nerve cell that goes from the spinal cord to a muscle. They are responsible for all voluntary movement. When a muscle stops recieving messages, it wastes away (atrophy)

PLS only involves UMNs (which is why poor Barry topples over so much!!) PMA only involves LMNs. ALS involves both UMNs and LMNs.

Hope this sheds some light on the subject.

[matthew55]

We have Ellie the Oracle, who needs Facebook? 😃x

[denise]

She knows everything. Makes us all lazy. We dont look thingsbup we just ask Ellie. 😚