New member with IVIG question

[SBHarley]

Hi,
My brother has just been diagnosed with ALS.
We the family are devastated. He is young with a young family.
He has been told he can start IVIG treatment next month.
I see that many ALS sufferers on this forum have had IVIG, but my understanding is that it is not appropriate for ALS, but only for Multifocal Motor Neuropathy (MMN)
Could anyone clarify for me why people diagnosed with ALS are offered IVIG? Is it to double check whether in fact they have MMN and not ALS?
Thank you for your help.

Ps I'm sorry, I posted this question in Visitor Messages and now see it should have been started as a new thread. Apologies for any confusion.

 

[Nikki J]

I moved this as your brother has a diagnosis. Yes I think the hope is that it is something else. It would not usually happen in the US unless there was at least a faint indication it was a different issue.

Your brother is young and male- a higher risk group demographically than others for MMN. That may be part of it. Maybe he has something clinically that casts doubt on ALS. Maybe it is common practice in your country. I hope it helps.

 

[Diane H]

Part of the diagnostic workup for ALS should include blood work to look for antibodies that indicate MMN. If antibodies are found IVIG is effective. IVIG has not been found to be helpful in ALS. Antibody testing is fairly new and generally requires sending the blood samples to a specialized laboratory. If that isn't possible due to distance and transport time, a trial of IVIG may be done instead. Because the science is not perfect and still evolving, a doctor may agree to IVIG even if the antibodies are not specific, but IVIG is quite expensive. Insurance companies here are unlikely to pay for it without antibodies being present.

 

[SBHarley]

I moved this as your brother has a diagnosis. Yes I think the hope is that it is something else. It would not usually happen in the US unless there was at least a faint indication it was a different issue.

Your brother is young and male- a higher risk group demographically than others for MMN. That may be part of it. Maybe he has something clinically that casts doubt on ALS. Maybe it is common practice in your country. I hope it helps.

Thank you. My brother is in the UK. He is 39. I don't know if this makes a difference?

 

[Ells]

I had IViG to rule out MMN. It is not given as an ALS treatment in the UK, so there must be some doubt, albeit even a tiny one, of the ALS diagnosis.

Is he attending an MND specialist neuro?

 

[Nikki J]

Ells thanks for chiming in. I know your neuro is a top MND specialist. Was her doubt based on anti GM 1 ABs, conduction delay or on your age and clinical presentation?

I know at least 3 members from the UK had an IVIG trial and I think you were all young. I was thinking it might be helful for future readers to know if in the UK IVIG is used for young people who are lower motor neuron dominant with a not too diffuse limb involvement or if as Diane says it is like the US where you probably have to have lab results to support IVIG approval.

 

[Ells]

I was 37 and not male! I had the treatment based on clinical presentation and age. Obviously by then, various other possibilities had been ruled out, leaving MMN & ALS on the table.

It's different in UK & Ireland as we've state run healthcare, so no insurance criteria to fulfill. That said, there must be good reason for treatment, as it is an expensive drug. Just because one is young isn't reason enough to get IViG.

 

[SBHarley]

Thanks so much for your feedback.

I will pass on what you said to my brother.
I'm still unclear as to why they would have told him he has ALS and no chance of treatment and no hope, and then told him he can have what sounds like Intravenous Immunoglobulin (IVIG).

Perhaps I misunderstood, perhaps this is not what they are offering him, but I can find no info on any other treatment that sounds anything like the procedure he told me about.

 

[mpnatx]

SB, I also had IVIG treatments. My first diagnosis was either ALS or MMN. Since I had a three month wait to see the specialist, my neurologist started IVIG pretty quickly in the hopes that it would help. No improvement and an official diagnosis stopped the IVIG. Also, IVIG is very expensive.
Wishing your brother the best, Marty

 

[SBHarley]

Hi Marty, Nicky and Ells.
Thank you so much for your replies, your information has been really helpful.
My brother's diagnosis is very new – in the last few days. He is in shock as are we all, so our information at this stage is not very clear.

My brother’s story began 18 months ago when he collapsed in the street.
The doctors initially suspected a mini stroke/heart attack, but when these were ruled out they started neurological tests.
He has been having 3 monthly tests for a year, and last week they told him they had a diagnosis of Motor Neurone Disease (MND).

There is a bit of confusion because my brother is in the UK, and the terminology in the UK and the US seems to differ (MND in the UK seems to refer to Amyotrophic Lateral Sclerosis (ALS) in the US?).

At any rate my brother has not been diagnosed as “either ALS or MMN”. He has been diagnosed as MND.
Which is why I wondered about them offering him IVIG.
Perhaps the chance of it being Multifocal Motor Neuropathy (MMN) is such a faint possibility that they don't want to risk giving him false hope so haven't mentioned it, but will give him IVIG anyway just in case.
However, I note many posters on this forum have mentioned that they won’t offer IVIG if there is no hope of it being MMN, because of the cost and because it doesn’t have any effect on ALS.

Perhaps because in the UK health insurance is not an issue, IVIG may be offered to patients of his age (39 years) as a matter of course, just to absolutely rule out the possibility of a misdiagnosis.
I don't know, and I would like to understand better.

I have passed on all the info I can find to my brother. I don't want to give him false hope, but f course we need to know if there is a possibility of it being MMN, which is so much the lesser evil.

Thank you all so much again, I will have many more questions I am sure, I hope you don't mind.
My thoughts are with all of you.

 

[WendyWooG]

Hi SB
I was initially diagnosed with mnd in sept but because I had a history of autoimmune disorder, sjogrens and fibromyalgia and my presentation was initially purely lower motor neurone symptoms they trialled me on the Ivig and put me on a differential diagnosis during the trial. The antibody test being positive is not a requirement in the uk, mine was negative. The treatment was stopped when along with no improvement, I started showing upper motor neurone symptoms. They then changed the diagnosis back to mnd.
Wishing your brother the best of luck and I hope the Ivig works for him.
Wendy x

 

[mcwtlg]

SBHarley - I (male 50 Y/O) was diagnosed with ALS in Feb of 2015 and after a year of slow progression, the neuro decided to give IVIg a shot. I had the initial 3 day booster then once a month maintenance doses for 3 more months. My blood work came back negative for MMN antibodies but since I was progressing so slowing the neuro decided to give the therapy a shot in the off chance it was MMN (He told me early on he thought it was one or the other). Sadly the IVIg treatments did not have any effect for me. MMN is manageable but curable.

Prayers to you and your family.

 

[SBHarley]

Thank you Wendy and mcw, for your kind comments and responses. I'm so sorry the ivig didn't work for you. I get the impression my brother's doctors are trying it as a long shot but that is speculation tbh. I will keep everyone informed on this forum.
Thank you again so much everyone, for your feedback and sharing.

 

[timag49]

I've been diagnosed with lower motor/ALS. I live in the US but also have a neurologist in Australia where I used to live. He suggested that at least 5% of the people who do not test for the antibodies and show lower motor neuron disease symptoms can in fact have MMN. So I went to Australia and began the treatment a year ago. When I came back my neurologist here in the US was kind enough to continue the treatments every four weeks. My bottom line is that after three years of slow but steady loss of function I have stabilized over the past 12 months. I had an FRS of 33 last August and I have an FRS of 33 today. So, in effect, I have a double diagnosis of ALS and MMN. If I began to progress again I'm sure that we will stop the IVIG. However, the year of stability is a long time in our lives and I'm thankful for that.

 

[laurel]

In Canada it is fairly standard to try IVIG if some questions remain about the diagnosis of ALS. My husband has been on IVIG since 2007 when I first joined this forum as there were question marks about his diagnosis. He presented with thenar plane atrophy of his rt. hand and forearm, and the start of drop foot. Anyway he had the usual workups for autoimmune diseases, heavy metals, including the Athena Labs profile. He was diagnosed with CIDP with a rare variety called MADSAM which presents with many motor symptoms. He was given a trial of IVIG and showed some regained strength in his rt. hand. CIDP can mimic ALS especially the motor variant. He receives the IVIG every 3 weeks for 2 days and he is one of the lucky ones who had CIDP and not ALS. When he was being diagnosed, there were several people with queries of ALS, MMN, and CIDP receiving IVIG. Most were given a 3 day loading dose with repeated treatment for 2 or 3 rounds over a few weeks to give it a fair trial. Some bailed on the treatment due to the classical side effects of terrible headache. Husband got good advice to deal with the headaches i.e. prednisone, naproxsyn and drinking lots of water pre, during, and after treatment. He continues to drink copious amts of water to avoid the headaches that come with IVIG. Husband has not improved on the IVIG, but he has only very slow progression of his symptoms. Wishing your brother success with the IVIG!