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SBHarley

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Joined
Aug 21, 2016
Messages
26
Reason
Loved one DX
Diagnosis
08/2016
Country
SP
State
Malaga
City
Periana
Hi, I've been posting on here on and off since my brothers ALS diagnosis last July. He's only 40 and has a toddler and a new baby only 8 weeks old. We're all devastated and I've spent a lot of time researching treatments and therapies.
His situation at the moment is that he's being given IVIG every 6 weeks - he's in the UK where this seems to be standard practice for young PALS with no UMN signs.
He's had 4 IVIGs so far. The first one seemed to produce some results (regained some use of finger and arm muscle) but since then no further improvements.
He's pinning all his hopes on a differential diagnosis of Multifocal Motor Neuropathy, which is LMN only, and can be treated with IVIG.
Last week he started to experience leg shaking and weakness, which I am worried could be clonus which I understand is an UMN sign, so would rule out the MMN hope.
I can't really talk to him much about any of this, he is so terrified he avoids the whole subject of his diagnosis most of the time, and just says he wants to be positive and optimistic.
However I'm aware that if the MMN is ruled out it will be a huge blow, and he will need support and advice, and I want to be there for him.
He's not consulting the forums at all himself, by the way.

I've seen lots of compelling info suggesting cannabis is a good option for him whether it's MMN or MND.
I've told him about this but, as with everything else, he's not following it up.
I know some posters here are using it, and I wondered if anyone could either post a reply here or message me about their experiences so that I could show my brother what other PALS have to say.
I'd be really grateful for any support with this or any other aspect of handling things and helping my brother.
Thank you all so much, brave people.
 

KimT

Extremely helpful member
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Our support group had a doctor present on Wednesday. He was an anesthesiologist and pain management specialist. He worked in Vermont for 6 years exclusively with MM. He believes it can slow progression. There are various combinations of all the active ingredients in the plant but his belief is that you need the whole plant. The science he works on is how much of each active ingredient in the plant works best for various diseases. It's not just about CBD and THC. He has suggested formulas in edibles and tinctures that he believes work best for ALS. I've been taking Charlotte's web for a year and he was glad to hear that. He's going to formulate something to go with CW so I get the benefit of the full plant without getting me high. I've tried edibles and they seem to be too activating for me. They were probably from a strain that was more activating rather than a hybrid or more sedating. The good thing about the dispensary he uses is that it is all organic and independently tested. It's at the University of Florida. There is a 90-day waiting period in Florida but I had my face-to-face with him on Wednesday and that starts the clock. Now I have to get my medical records to him and we can do FaceTime then I will get my order in the mail. I'll do a Facetime with him every month. His specialty is to get people off Oxy and other stronger pain meds that suppress breathing and replace with MM. He understands ALS and he understands the respiratory system and pain management. I liked him a lot.

He said he has seen patients slow progression and believes that MM is the best tool we have so far in our fight for quality of life and possibly longer lives.

I'm giving it a whirl. It'll cost about $400 a month.

His talk was very encouraging.
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
Some of us who use mmj are a bit past being able to write long missives, but fortunately this forum saves old posts.
Using the Search feature will give you many answers.
 

SBHarley

Member
Joined
Aug 21, 2016
Messages
26
Reason
Loved one DX
Diagnosis
08/2016
Country
SP
State
Malaga
City
Periana
Thank you so much for taking the time to reply, Greg and Kim.
Kim, your information is really useful. Although my brother is in the UK, where unfortunately MM is illegal, at the moment it is still possible to get CBD oil legally. I will pass your info on to my brother - as he doesn't pay any attention to what I say about it, I am hoping he will listen more to fellow PALS.
Greg yes, I have consulted the search and will comtinue to do so. It is largely through searching on forums that I first realised that MM could be used to manage and slow progression of ALS. The official support sites for ALS/MND in the UK make no mention of it at all.

Any and all responses are gratefully received, thank you so much.
 

Lkaibel

Very helpful member
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Joined
May 9, 2016
Messages
1,374
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
Marijuana works wonders for cramping and muscle tension in general. It stimulates appetites, helping with taking in greater amounts of calories PALS need. It can also help with sleep issues, another bonus. The jury is out still on slowing progression, but on balance I would say anyone who wants to try it should with a careful consideration of any potential legal issues. In Minnesota (USA homestate) there is a bunch of junk about supposedly legal MM, and you can never be prescribed opiates for pain if you use MM, AND it is available in oil only so it is very expensive with no insurance coverage available. So there is a lot to think about in those things depending on where you live.
 

KimT

Extremely helpful member
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Joined
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Messages
3,975
Reason
PALS
Diagnosis
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I had the opportunity to try the rub in salve of MM. I was not expecting anything but it did dull the pain in my sprained ankle. It is not legally available in my State YET! Anyway, another woman with arthritis uses it regularly for her pain and says it's the only thing that helps her. She was terrified to take it orally but says the cream works better than Advil.

Much of this in anecdotal but I've heard enough stories and seen enough people to know that it has many benefits. The woman who grooms my dog uses it for cystitis and it is the ONLY thing that helps. She said it gave her her life back. She smokes it.

I have never been a pot smoker and smoke of all kinds chokes me up. Smoking it is not an option for me. I can't even be in a room with a person who smokes because the smell of them gives me migraines. I would not have thought in a million years that I'd be begging for MM but, from what I've seen and experienced, I'm convinced that it's both safe and definitely helps symptoms. I also believe that it can help slow progression. Maybe not in everyone, but I'm willing to give it a go.
 

debwilson77

Active member
Joined
Jan 10, 2016
Messages
74
Reason
CALS
Diagnosis
02/2016
Country
US
State
AZ
City
chandler
We live in Arizona and medical marijuana is legal here. My husband uses transdermal patches and I make him capsules using a concentrated oil. We are not smokers either. He feels it helps.
 

Manhattanite

Distinguished member
Joined
May 10, 2015
Messages
209
Reason
Lost a loved one
Diagnosis
05/2015
Country
US
State
NY
City
New York
My partner took medical marijuana in the form of a sublingual oil. We had hopes it would help with appetite and sleep but it didn't do anything for him even though he was trying the maximum dose.
 

GregK

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Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
My partner took medical marijuana in the form of a sublingual oil. We had hopes it would help with appetite and sleep but it didn't do anything for him even though he was trying the maximum dose.

You should consider adding THC.
 

Manhattanite

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Lost a loved one
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You should consider adding THC.

That's a good point. The formulation that the dispensary prepared for us was higher in CBD, as they claimed it would be better for its neuroprotective qualities, but you have encouraged me to take him back and ask for a different formulation.
 

Lkaibel

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I really believe it's not much at all without the THC, not for things like appetite or sleep anyway.
 

KimT

Extremely helpful member
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I think the whole plant covers many things and I agree that the components are synergistic. However, CBD is very effective for epilepsy. That's what turned the heads of so many in the medical field, particularly the neurologists. I had a specialist (not my treating doctor but someone I met at a meeting) tell me if he had ALS (he has patients with it) he would buy it on the street rather than go without.
 

GregK

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Joined
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Messages
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PALS
Diagnosis
11/2012
Country
US
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CO
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Colorado Springs
CBD does indeed seem to greatly reduce epilepsy. That was what initially caught my attention.

Charlotte Figi, of Charlotte's Web fame, saw huge improvement using cbd only.

There are also a number of children who saw increased benefit when thc was added.
I tried going without thc for ~6 months but ny progression sped up.
 

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Scotiaspirit

Distinguished member
Joined
Nov 21, 2015
Messages
201
Reason
PALS
Diagnosis
11/2015
Country
CA
State
Nova Scotia
City
Dartmouth
Although my neurologist was not the doctor that initially prescribed MMJ to me, she is very confident from her preliminary data and and she keeps in touch with another neurologist Quebec who does prescribe it to her ALS patients, seems to show it may slow down progression in some patients. I have been taking that since spring 2016, in the oil form, started out on the CBD oil, very similar to Charlotte's Web, and immediately I had an improvement in appetite. I gradually worked my way up with 10:10 oil going from 0.1 ml up to 0.8 ml (9.8 MG the per ml and 9.9 MG cbd per ml). I take the CBD oils through the day and take the combine CBD and THC oil before bed and it has improved my quality of sleep. I do have a vaporizer and can take the herbal leaf The Vaping acts immediately to within a few minutes after taking it or when taking the oil it takes about one and a half hours to reach its maximum effect the duration up to 4 hours of relief. and I would estimate it was for about 4 hours of relief. Our most recent visit with my neurologist she wants me to take cbd oil up to 4 times a day or every 6 hours as needed and gradually add more THC as tolerated.
Rather it has slowed my progression or not there is no way to really know as my dosages has varied considerably from when I started taking it to the present day. So far it has helped me with my appetite with pain control with quality of sleep and helping offset the severity of the cramping. The downside it is very expensive and is not covered by my medical insurance.
 
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