Contradictory reports by two doctors! What to do!

[jeff_089]

Hi,

My dad had been diagnosed as having als about 2 years ago. The progression is rather slow and has
not affected his breathing or speech. His legs and arms are weaker but he is still able to walk around
with the help of a cane.

My dad went to india for some massage treatment that he does yearly and while he was there his sister told him to go to a neurologist.
He went to the doctor and was able to take all tests in a matter of 1 week(biopsy, emg and etc.).
The doctor gave him a report that concluded that he has either pma or multifocal motor neuropathy. The doctor clearly ruled out als and said it would be between the two diseases he prescribed and he said he was leaning more to the multifocal motor neuropathy.
My dad came back to canada the following week thinking that we could get the treatment for the multifocal disease here(which ivig).
But when he got back he found that our doctor would not prescribe the ivig. He took another emg test here and the doctors still concluded that it is als and that they will not administer ivig because they do not think it will help.
I still want my dad to try the ivig to see if would help. After 3-6 weeks on the medication, we would be able to see if it is helping but our doctors will not allow us to try it.
The negative side effects of the treatment are very minimal compared to the benefits.

Could anyone give any advice as to how we could get the ivig treatments? And why they will not let us try it out?

Thanks,
Jeff

 

[tmasters]

Wow, Jeff, I sure hope the Indian doctor is right. Did he give you a written diagnosed or any reason why he could rule out ALS? My guess is that your father shows no UMN signs: no brisk reflexes, no Babinski, no spasticity, etc.

The EMG can't distinguish between ALS or PMA or MMN, so your neurologist can't rule out any of these by re-doing it. Seems silly if they made the ALS diagnosed based on this.

Many of us have tried IVIG as part of the diagnostic process. As you probably know, it does nothing for ALS but usually shows benefit in the case of MMN. Problem is, it's very expensive, on the order to $10k per treatment depending on the dose. I had 9 treatments before we gave up. The cost probably has something to do with it.

If you could get some kind of written documentation from your Indian doctor it may help. You should also try for a second opinion. Find a neuro who will listen.

Good luck,
Tom

 

[laurel]

Hi Jeff,
We're in the Vancouver area too, and my husband has CIDP treated monthly with IVIG. He at one time had a differential diagnosis of ALS. Did your father get assessed at the Neuromuscular Disease Centre at VGH? We spent several years under the care of a neurologist who misdiagnosed my husband, and finally got to VGH. I think one important factor is that your father always have a family member as advocate with him when he talks to doctors. My husband is pretty passive, and I am pretty assertive. Also when he was feeling really at his worst he couldn't really hear and retain much of what was said to him--and I was always present to ask questions and push when necessary. We had some battling over the IVIG. I think the BC Government really puts rigid parameters on the IVIG due to cost, and they encourage specialists to choose cheaper drugs or in your dad's case perhaps not go that route at all unless there is medical rationale to try it. Are they saying that the doctor in India lacks credibility? From my reading, they are quite advanced in their thinking about neuromuscular disorders in India. My suggestion would be to ensure that you have written documentation from the doctor in India that spells out why he thinks MMN is a possibility, bone up on MMN, and make an appt. and go in with your father and be a squeaky wheel. Say something to the effect that if there is even a small chance that my father has MMN I want him to be tried on IVIG, that his life is worth that. And if you can't get anywhere with that neurologist, try another one. And if you get the IVIG, ensure he is given a proper loading dose of 2 Grams per kilogram of his body weight, and I would ask for a three month trial as there are many who don't respond with the first loading dose and then show improvement with the next treatment. If you have any more questions, I would be happy to try to answer them.
Laurel

 

[jeff_089]

Thanks Laurel and Tom for your insight.We do have all the doctor's reports and ct scans from the doctor in India. Including emg, nerve conduction studies, biopsy of the nerve, blood tests, ct scan,
ultrasound, etc are in our possession. It was a very thorough examination.

Laurel, would you mind giving the name of the doctor that you got help from at VGH? My dad has been working with
Dr. Krieger at the ALS clinic and Dr. Mizzie at VGH.( The tests that were done today that showed up as als was at the als clinic)

Thanks again.

 

[joelc]

My neurologist is also Dr. Krieger and I would have a hard time believing that he would say ALS unless he was absolutely sure. I would put more faith in him than the other doctors you talk about. I understand how much you want him to be wrong, but please don't get your hopes up.

 

[laurel]

Hi Jeff,
Like Joel says Dr. Krieger is the best of the best. Did he have copies of all the reports from India? And did he say why he was unwilling to try IVIG after he read those reports? If so, why?
Laurel

 

[jeff_089]

Suprisingly, he did not read the reports in full but read the summary. He said that if he cannot diagnose multifocal, he would not be able to prescribe ivig.
My family and I are really confused and do not know what we should do as our next step. Looking back my father should have stayed in india to get the treatment but because my
mother had to come back to work and thinking that we could get the treatment back in home we decided that he should come back.

 

[GlenBrittle]

Hi Jeff,

I have not asked my doctor about this yet, but if IVIG is only in trials or experimental , Canadian medical rules may not allow them to prescribe that treatment.

I say this because my ALS doc would not give me lithium as it is in trials. I cheated and went to my GP for it.

Food for thought. Dont give up the fight.

Glen

 

[laurel]

Hi Jeff,
One thing that you might try is asking the neurologist to order a sensory motor blood profile from Athena Labs. Anti-GM1 antibodies are present in between 50-85% of patients with MMN. This is a blood test that can be done at a local blood lab. such as BC Bio Medical but you will have to pay for it. It costs about $1500 and the results take about two weeks. My husband had it done and his test was negative for the antibodies but he doesn't have MMN. I think that the neurologist should be very understanding in your desire to find another answer other than ALS since you have a report that queries this. I think you need to be very upfront about wanting everything done that can be done before accepting the ALS diagnosis. Be nice, be informed, and be assertive.
Laurel

 

[jeff_089]

Quick update on our situation. My dad was given permission by the doctor to try a trial of the
Ivig. Pretty excited! Thanks for all of your inputs from before.

Laurel, what is the usual trial cycle for the ivig treatment?

Thanks again, and hoping for a good outcome.

Jeff

 

[laurel]

Hi Jeff,
That is good news. The usual trial is 2 Grams of IVIG per kilogram of weight. That is what they call a loading dose. I think to get that amount in for my husband's loading dose he went in to the day care daily for 4 days. They can only give so much a day. Keep in mind that for many people they don't have response after the one loading dose. It sometimes takes 2 to 3 months. The next month they would give 1 Gram per kilo of weight as that is the maintenance dose. My husband responded super well during the loading dose and got some strength back in his atrophied hand by day 3. He finds that his IVIG seems to wear off about 4 or 5 days before his next monthly dose and he will lose a little strength. But we haven't really pushed for a little bigger dose as we don't want to rock the boat as we had to fight to keep him on it at current dose. Let is know how it goes. Also, it is REALLY important for your dad to drink lots of water starting a couple of days prior to getting to the IVIG and to drink lots while getting it. IVIG can cause killer headaches and the drinking seems to really help avoid the headaches. Also it is very common for people to pre-medicate prior to IVIG. i.e. the morning of the treatment before going in, take a couple of Tylenol and a benadryl. This helps to avoid the headache and the potential rash that some people get. My husband did this religiously the first few months--taking the Tylenol and a benadryl. Now he just takes the Tylenol. Keep us posted.
Laurel

 

[aparajita]

help please

Hi Jeff,

Could you please give me some information about the doctor that treated your father in India? His name, the city, contact ... My father has been diagnosed with ALS in India and we are desperate to find a good doctor who can confirmt he diagnosis.

Thank you,
Apu

 

[jeff_089]

Sorry that I didn't get back to you sooner Apu. I haven't been checking back on this forum lately. I would be glad to give you his info.

Dr. Firosh Khan
email: [email protected]

Mother Hospital
Trichur
PH: 04872434800
Email: [email protected]

He an associate professor of neurology at Amala medical centre. He did his fellowship in Calgary. He was very thorough with his tests and was prompt in his diagnosis. If you have any other questions please feel free to send me message.

 

[laurel]

Jeff,
How is your father? Is the IVIG helping?
Laurel

 

[jeff_089]

Hi Laurel,

Appreciate you asking about my dad. How's your husband by the way? Is the IVIG still helping him out?

My dad has been doing okay after his first trial of IVIG. The weird thing about the dosage was the implementation of the IVIG. Everywhere I read it said that the IVIG had to be given over 5 days. My dad got the 2 grams per kg in a shorter span. They gave him the correct dosage but in 2 days instead of 5. We were also given permission to try a second dosage as well. (2 weeks from now)

My dad took a grip test before the first treatment and will take the test again next week. After, he will have another dosage of IVIG in a couple weeks and again will take a final grip test 4 weeks after the 2nd dosage to see if there are any improvements.

The doctor told us before the treatment that we should try and keep in mind our own benchmarks. ie. if any of the small things get easier it might mean that there is some improvement. Previously, my dad had trouble putting on pants buttons. After the first treatment, my dad found that sometimes it was easier putting on the buttons. But it is tough to judge if there is any improvement so far. Also, since the treatment my dad has lost 5 pounds.

On a side note, we got an interesting call from one of my uncle. He is a doctor out in Ontario. We sent him all the papers that we got from the doctor in india(including the EMG findings and etc.). He forwarded all the papers to a few doctors that he knows in the area and they read and commented on the findings. They are leaning towards the Indian doctor's diagnosis of MMN as opposed to the one here, ALS. Now, our family friend has passed on the message from the doctors that they would like us to come to Toronto and take all the tests again with them. They want to see if the findings are similar to that of the Indian doctor.

Thanks,

Jeff