Lisa Brown
Forum Replies Created
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Hi, I started with left foot drop. Walking with cane 6 months ago now in chair unable to walk. I have stenosis in the usual places and also am a “its the stenosis” person. Now my arms have atrophy, carpel etc you all know. My best pain management has been CBD oil with low THC content. I use stronger CBD gummies if sleep is required. I take at night before sleep.
My fasciculations appear only if I overwork those areas affected ie, get in and out of vehicle more than 3 times in a day or even not doing any leg movements.I am lucky in that pain usually only presents itself when my legs and feet get super cold. (I have bad knees and as I don’t use them for walking now the pain is highly reduced) Gabapentin is good for the fascics.
I have given up mostly on prescribed meds and gone totally alternate medicine including LeapXX which definitely ups the energy levels.
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Hi, Before I was diagnosed I had foot drop and the first AFO was a simple L shaped brace – I could walk again – this came at the right time too, just before a quick trip to Australia to meet my new in-laws. It wasn’t long (6 months or so) before walking once more became awkward and painful on the back. Then came the plastic, custom, ‘hinged’ afo. I was set free once again. However, my ALS, still not diagnosed 12 months later, was progressing, coupled with a deteriorating osteo onset hip (which many trips and falls have not helped, Monty python comes to mind), I started to not be able to lift my knee and thus negated the use of an afo for walking but was useful for stabilising the ankle. 2 years later I can’t do steps and another six months I am in a wheel chair. My hip is painful all the time and stops me sleeping well. Don’t be like me, if you start tripping and falling, re appraise your situation and your needs. Carbon fibre in my opinion is worth the money if you are not going to deteriorate any more. Personally I would go for a walk assist exoskeleton if I could afford it to keep those muscles moving.
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Creighton, you absolutely nailed our ALS story. Can I please repost on my facebook page?
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Sorry for your loss. Please follow this link and have their names printed on flags to be flying in NYC Times Square.
https://iamals.org/action/show-als-can-impact-anyone-at-any-age/
Please everyone impacted by als follow that link for more publicity to help our fight.
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Has anyone asked Dr Bedlack about the side effects of Clen?
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Hi Dave, I too watched with interest that video. I would love to try Clenbuterole however in NZ it is illegal other than veterinary use for Horses. My research also shows that ‘Clen’ is used for doping. I’d love to know where these guys get it from 🙂
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AFO = Ankle foot orthosis These take on several forms – plastic, carbon fibre, dictums which is fabric and uses your shoe laces to hold up your drop foot, to name a few.
In my case my leg has weakend up through my hip and I can’t lift my knee high enough to stop my toes hitting the floor when I step, the AFO helps tremendously.
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I live in New Zealand and also do not have access to clinical trials. Although, since researching the internet, I probably wouldn’t participate due to the 50/50 chance of taking a placebo. I instead read with interest trial results and try to work out whether the drugs might be right for me. This is a costly exercise as most drugs are not prescribed in NZ. It is also a hit and miss exercise as I don’t know exactly what type of ALS I have and getting an exact diagnosis here is like hitting a brick wall. It is astounding the lack of resources and knowledge on this disease and I am fraught with anxiety as it worsens.
I recently found a website ‘stuffthatworks’. We can all share our experiences and see what meds are working for others. Best of all it is a database so everything is categorised. You can ask questions and everyone is asked to answer. I thin it would be good for everyone to join.
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Has anybody thought of Chemotherapy?
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Hi, Thankyou Louis. I will start taking L-serine more seriously now!
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Me too! Dagmar – can we have a separate thread for Treg therapy please?
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John, My experience exactly mirrors yours except my progression has slowed 77% according to the ALS scale, by taking RCH4 and appropriate supplements, magnesium for cramps and fasciculations. I too have stenosis – L4/L5 and cervical. To me the possible 3 months extra with Radicava or rizulole is not worth the side effects. It is a patch not a repair.
My EMG testing was performed by a Mayo Clinic trained Dr. Who specialised in muscular sound waves. Muscles make sounds when contracting and relaxed. I guess it may just be mirroring the amplitude of the signal. I digress. I did not accept the first diagnosis and went to another ALS specialist who confirmed MND. I am in NZ.
Mike, I recommend Mayo Clinic, although I haven’t been there, I have researched and know they are well trained and informed.
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Duane, I totally agree with you. I have recently been tested by a naturopath and found multiple * points to work on – eg: high mercury, low zinc, unhealthy liver….Which is very frustrating as I had my bloods tested fully including toxins through my GP which found everything OK.
I tried ropinirole as a trial was promising, however I stopped it due to side effects. I have clutched at straws in the past and came to the conclusion that not knowing exactly what form of ALS I have that I would have to back off and focus on natural therapies.
I use the ALSFRS scale to monitor my condition in addition to photographs of atrophy and personal diary (which I am not good at keeping up to date – life just seems to whizz by atm).
I will be trying Clenbuterol if I can get it into NZ, but I will also be monitoring myself and through naturopath tests. If I can continue racing my classic bike for the next three years with the help of a drug, I will be very happy. Right now I am at the stage of choosing go/no go and that is affecting my mental health.
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Thankyou.
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Bill, can you post a link to the site you are referring?
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This article is from 2017. Note the side effects are due to high doses of Clenbuterole.
”The effects that clenbuterol can have on the heart and muscles will depend on how high a dose someone has been taking and for how long. The risks increase with the dose and duration.”
Even Dr Bedlack noted the dosage used in his open label trial and has recommended a lower dosage starting at 10ugm then up to 20ugm.
The key is to know and understand your body and be prepared to stop taking anything when your body is disagreeing with it.
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I was wanting to know Dr Bedlacks opinion re side effects. He already knows that the dosage was way too high in the trials and perhaps the lower dose alleviates the negative side effects?
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Betsy, would you be able to start a new topic when you do have that next appointment and let us know the results?