Does this sound like progression ?

[Clanker]

Firstly sorry for starting a new post it appears due to time my old one has closed and secondly sorry for posing again.

At the start of January my neuro gave me a Diagnosis of MMN due to not being able to get any conduction from my arm in the NCS, he could not rule out MND - but did say it wasn't presenting as.

The reason I'm posting is I do not seem to be responding to the IVIG. My condition when I went to see the neuro was

Muscle wasting in both hands, forearms and shoulders and wasting in both thighs. Accompanied by clinical weakness and twitching. On my Emg the neuro noted no fascs outside normal and complex repetitive discharged from my calf. He didn't tell me anymore about the emg findings.

I had my first loading IVIG 6 weeks ago, my state since then is the muscle wasting in my shoulders has gone (within a week of starting the IVIG it seemed to return almost to normal and now is normal) but my hands and forearm and legs are the same. I can't stand from most seated positions without pushing myself with my arms. Fingers in both hands can be used but are curled at the first knuckle and point down. It never gets better but definitely has better and worse - even within a single day. Sometimes getting up from bed takes one attempt other times it takes six attempts. This mostly seems to have been the same since September/October last year with maybe more weakening in the right hand/arm.

I just wanted an opinion on if this sounds like progression or not - I'm not due to see my neuro again until June, and with not gaining strength back from the IVIG I'm rather concerned.

Thanks again for your time.

 

[affected]

Hi clanker

If you don't think you are responding, either call the neuro office and request an appointment, or go see your GP and discuss and maybe they will get you an appointment. You have the right to be seen again, you don't have to wait until June.

If that neuro won't see you, think about Sydney. Honest our rural specialists just may not have the expertise needed to figure it out.

 

[Nikki J]

I agree to get reevaluated. Do I read correctly you did have a little improvement ( shoulders) initially? That sounds a bit hopeful but I thnk you should still get rechecked. I think there is a small percentage of MMN that does not respond to IVIG and also some need higher than usual doses so will hope that is your answer. Please let us know what happens

 

[Clanker]

We definitely thought there was a vast improvement in my shoulders; before IVIG there was large indent for a lack of a better way to put it in both shoulders, notes by myself, partner and doctors. They've since returned to normal - that was what gave us a lot of hope. Also we found out my neuro sees local MND patients so we were hoping he knew what he was looking for. Going to sydney was in my radar but lve been out on extended leave at work with no pay and I'm in the process of getting sickness welfare (up to a month away) I was primary provider so 70% of our income has disappeared in the blink of an eye and we were not prepared at all. I don't think I can cover the fees involved which leaves me waiting.

 

[Atsugi]

Hoping for the best, Clanker.

 

[Clanker]

As always, thanks for your responses and time.

 

[Vincent]

The wait until June seems strange as the protocol is 1 series of infusions per month for 3-6 months to see if it is working. I don't see how 1 infusion and wait 6 months is going to help. I'd give the Dr a call tomorrow.
Vincent

 

[Clanker]

Sorry Vincent I should have elaborated there. I had the loading dose 6 weeks ago and my first maintenance dose 2 weeks ago. I'm on 4 weekly maintenance until I see him in June.

 

[Clanker]

I was given a copy of the letter today sent from my neuro to my gp. It mentioned a few things he didn't discuss with me. Confirmed weakness and atrophy which I already knew about. Said I do not have a typical split hand, Reflexes are preserved and not brisk in legs or arms, no hoffmans and plantar responses are downward, jaw is relatively brisk , tongue is full and no signs of cranial nerve problems. So from my understanding that is basically saying no signs of Upper symptoms?

He notes that the NCS has clear abnormalities which are not a typical sign of ALS.

Partner broke down on the closing statement of ïf this gentlemen does have MND it is very aggressive and he is in serious trouble.

 

[Atsugi]

Wow. He coulda left 6 words off of that last statement.

I would never pretend to diagnose, but if I were you, I'd be reading. (That's just the way I am.)

These could get you started on UMN and LMN signs:
The ALS Association
Medscape: Medscape Access
https://www.alshopefoundation.org/understanding-als/symptoms-of-als.php

 

[affected]

Clanker is this Northwest Neurology?

They are certainly not MND specialists, if so - one specialises in migraines and the other in 'general neurology', so I'm guessing it's James who wrote this?

The good news is that the letter seems to steer right away from MND (ALS), but that closing statement is so far beyond unprofessional.

Honestly, as I've said before, if you are worried, get to Sydney, see Prof Rowe, he not only knows his stuff but he is honestly interested in neurology and in the person he is working with. He is the leader in Australia and is only hours drive away (gosh I could get to him in 8 hours with break, and you are way closer) Prof Rowe doesn't only deal with MND either, so he would be the best to get this sorted with. We did not touch local neurologists, but went to Brisbane which is my closer capital city and got it sorted with the experts.

I know you have financial issues involved, but I would want this solved even to be honest. If you have a terminal illness, then at least everything will be covered for you by the government and MND NSW will help you tremendously. Or if you have something treatable and can get into that now, it could be important to get treatment going early.

You may have to be assertive. Obviously you are not happy with what is happening now, so take action!

 

[twitchykitty]

In hindsight the gp maybe shouldn't of given you the letter.
I hope this gives you hope/ reassurance . I was told 90% sure I had MMN despite having upper motor signs over my whole left side and jaw. I mean I fully kicked the nuero in the shin when he tested them as well as the reflexes I had clonus and spasticity ( chime in smarter ppl if they're lower symptoms from memory they were upper)
I went off and had the ivig and it made absolutely no difference at all
Please don't wait for the appt just call the nuero or get the gp to send a urgent referral , I did both and they were very obliging and helpful
Don't stress longer than necessary
Fingers crossed for you

 

[Clanker]

As always thank you all for the replys;

Mike - After reading those and what i've read in the past i've never felt i've had UMN signs. The only thing maybe is when I wake up in the morning the backs of my calves are stiff, but that "works out"as I move around throughout the day. Sorry if this sounds wrong but all of my muscles do what I ask them to do. So even my most wasted of muscles I can flex and move, its just weak, the only thing i've lost is finger extension which I can achieve if I rest my other index finger on my knuckles.

Tillie - You're 100% right with who I am seeing, and you're also right I have to get to Sydney and get this sorted out. I can't just keep sitting around wondering and self examining over and over.

Twitchy - Thanks for your imput and well wishes.

 

[affected]

I just know rural Australia mate. We are so lucky in this country, but when it comes to something that needs a specialist specialist, not just a general specialist we have to do the miles.

That reminds me, look up IPTAAS - the isolated patient transport and accommodation assistance scheme. Apply to them NOW. Once you are approved you just fill out the details of each journey you need to make, the doctor signs off that you attended and you get a good level of assistance financially. They take just a little while to process you into the system. They will pay you mileage to get to Sydney and pay for basic accommodation while you are there. This is for rural people who cannot access the medical assistance they need locally. You will easily meet their criteria. This could be a big benefit in affording to get to see the right person to sort this out.

 

[Clanker]

Thanks so much for the advice there Tillie, every bit helps!