Joel, I live in Melbourne so not too far to get to my treatments. I have attempted to join both that group on Facebook that you sent me & a few others about a week ago but still haven't been accepted yet. I am going to try and get my dosage increased or have them more frequently because of the symptoms returning before I'm due for my next one, hopefully someone will listen.
Regards, Heather
Live in Australia my story
(40 posts) (8 voices)-
HeatherS
MemberPosted 1 year ago # -
Guy
MemberReplying to @twitchyfirefly's post:
I was diagnosed and started treatments for MMN in the year of our Lord in Nineteen Hundred and Ninety Three. They determined that I was a sociopath in the 80's...please don't ever mix those up again. Thank You ...
Posted 1 year ago # -
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Toxic
MemberHi again everyone. Well I can now answer a couple more queries for you. My dosage was 27g per fortnight over approx 3 hours for 3 months. I saw my neurologist again on June 1st and he has decided to take me off IVIG as it didn't help me. He has diagnosed me with MND/PMA (Progressive Muscular Atrophy) and wants to see me in 6 months to do EMG's on both arms and my right leg as they have become weaker.
I can only hope he is wrong and that I do infact have MMN but at least I have a diagnoses and can now get on with claiming a pension (fingers crossed) He has also told me I am unable to lift anything heavy at work if I stay on so either my boss will have to accept that or I wll have to give up work.
In a way I'm glad I have a diagnoses, even if it isn't what I was hoping but then again even MMN is bad enough.
Hopefully now my GP can steer me in a new direction for assistance and I hope I can keep the creditors from my door until I can get myself into a better financial situation than I am currently in.
Heather, please feel free to contact me privately if you wish, as I live in Bendigo Victoria and have a friend who lives in Melbourne.
Posted 1 year ago # -
Hey Toxic
I'm both sad and glad for you. Not to raise false hopes, but you are aware that diagnoses can go back and forth. I sound like a stuck record, but 30% of people are not helped by immunoglobulin. So it's not a definite test.
I edited your email address out of your post and send it to HeatherS privately. Otherwise you would be subjected to a whole lot of spam and worse.
Do keep us apprised of your progress!
Posted 1 year ago # -
HeatherS
MemberHi Toxic, Seems to me you were on a very low dosage as mentioned I am approximately 50 kgs and get 50gms per month. As I've discovered everyone is different. I now have another appointment with Timothy Day on Monday to attempt to get this increased as the symptoms are coming back sooner. I was also told that I had MMD but after a little research and as I had these symptoms for 6 1/2 years figured I should be dead! I was told this by 3 different Neurologists. So all I'm trying to say is get another opinion, I had 4. They are also telling me that they have definitely not said that I have MMN so I'm basically in limbo there too. How long have you had these symptoms for?
I hope you have an understanding boss and everything works out for you financially, that's really tough. I have your private email and will send you a message there, take care
Posted 1 year ago # -
Toxic
MemberReplying to @twitchyfirefly's post:
Thanks Twitchy, I didn't want to leave the email but had no other way of forwarding it.
I do understand that IVIG doesn't help everyone and I also know that if I did have MND/ALS I would already be dead as I've had symptoms for well over 10 years. I think Professor Collins has given me the diagnoses so that I can move forward with securing a disability pension as without a diagnoses I get nothing. Perhaps when he does the EMG's again he might try me on a different IVIG drug, I will suggest it as I met one of his patients while having treatment who also started on Intragam and is now on Privigen (I think)
My Boss in not very understanding at all and he's never even at work, basically the shop staff (me and my work colleagues) run the shop and have done for some time now. He won't sack me though as I am the most senior staff member who has been with them the longest.
Posted 1 year ago # -
HeatherS
MemberUpdate after seeing the Doctor who works under my Neurologist and them him for a few minutes. I explained how symptoms were coming back sooner, eg the twitching, pins & needles in my feet (does anyone else get pins & needles)? Anyway after explaining I'd done a lot of reading and getting valuable feedback from others with MMN and realise everyone is different with different doses & frequencies. The Doctor was leaning towards upping my IVIG but was actually astounded by the answer from the Neurologist he said 'we are not treating symptoms we just want to ensure it does not get worse'! Ummmmm if by increasing the IVIG can alleviate these symptoms isn't that good, he needs to experience getting woken up 10 times a night from twitching or walking around on feet with pins & needles 24hrs a day. Said they will continue to give me 50gms each month (had a treatment last Tuesday & has done nothing) So gone from being great no symptoms for a month on loading dose then each month getting shorter. Just said we will see you back in 6 to 12 months. I asked doctor if there was a neurologist who may have more clients with this - her answer was if there was they'd be broke. So no difference here.
Yesterday to a hand therapist - what a difference she told me she knew nothing was trying to find more, was even interested in all info I had which I emailed her. Spent an hour with me, gave me a splint to wear occasionally during the day as my wrist has dropped is booking me in for Physio to see if we can get exercises I may try to help with hand strength and the odd feeling I have in my hip. She is going to do some research and see if she can find out whom others are seeing. Back to see her and Physio next week.
Posted 1 year ago # -
HeatherS
MemberForgot to add when I asked the Neurologist if a muscle is twitching constantly that surely can't be good as it would break that muscle down, his answer was absolutely not you would be working that muscle which is good. Grrrrrr having done body building in the past I KNOW that you never work the same muscle daily as it takes 24 hours to build, that is why body builders work top half one day and bottom half the alternate day. This gave me no confidence in him.
Posted 1 year ago # -
Heather, do you have any chance of getting a second opinion or seeing somebody else? Because I've corresponded with many people from Australia and have never heard some of the things that doctor said to you. You might get more feedback in the Facebook group about this.
Posted 1 year ago # -
HeatherS
MemberI ave now seen 5 neurologists (they must be able to recognise my name now). The hand therapist I saw yesterday who was extremely honest saying she had never heard of MMN is also going to check to see if she can find someone who is more open to suggestions or at least read some of the info out there (as little as it is). She will let me know if she finds someone. I was astounded when he said that to me, isn't a symptom what is usually the bell warning something isn't right.
If I can find someone more open to listening & info I will certainly see them, but also don't want to stop seeing this neurologist as that's the one linked to me getting some IVIG. It's sooooooo damn frustrating
Posted 1 year ago # -
HeatherS
MemberWoo hoo had a win. Have been seeing this Hand Therapist still who sent my Neurologist a very detailed email on how my strength was about half 2 weeks after IVIG treatments. Then on testing immediately after was stronger again. He has now agreed to now take me from monthly treatments to every 3 weeks. Same dose 50gms. So hopefully will not get the symptoms back, fingers crossed. Also seeing a Physio who has me doing heaps of exercises on legs. So between hand exercises and leg ones at least I must be getting fitter ;-)
Posted 1 year ago # -
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Sallyk
MemberHi everyone I'm from WA. After reading your posts I realise I have been very lucky. I was originally diagnosed with MND about 2 years ago then as my symptoms were progressing slowly the advisor from the MND Association suggested I contact the Neurology clinic at the new Fiona Stanley Hospital. After the consultation they suggested I try IVIG for 3 months but warned there was only a slight chance it would help if I had been misdiagnosed and it was MMN. I was at the point where my left hand had no strength or ability to hold anything muscles wasted, foot drop in right foot and very breathless and fatigued. Couldn't walk far or climb stairs.
The effect was miraculous, after about 2 months I had more energy, my foot drop disappeared and I can now hold things in my left hand. Life is definitely looking up.
Initially I received IVIG for 5 days straight, 30g at 10% octagam. Then fortnightly (that Aussie word) for 2 days, same dosage. I changed to Previgen for a month due to an itchy rash, but found it became worse and my symptoms started to return especially the breathlessness. Changed to Flebagamma and all good again. Same dosage though. The itchy rash continues even with pre med of Hydrocortisone and antihistamine. Bloody annoying, but a bit reluctant to ask to change brands again after Previgen incident.
Good luck to you all, it's so great to find this forum and know I'm not alone. I hear it isn't a very common condition in Aus. So grateful it's not MND. I was joking with my neurologist that before I started this treatment I threw out my winter clothes as I thought I wouldn't be around to wear them. Just my warped sense of humour!Posted 1 year ago #
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