njguy
Forum Replies Created
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Yes I totally agree with Richard 🙁
And there seems to be no action plan or initiative, and the trials take their own pace.
AND pALS are suffering! And God only knows when there will be a real cure!
What is the way out????
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njguy
MemberDecember 15, 2021 at 3:52 pm in reply to: Using immunosuppressant drugs to halt / slow down ALS progressionHi Andrew,
Thank you so much for sharing the information about Ibudilast, this is exactly the same idea that I mentioned above. Here is a link which describes the trial related to this drug
https://alsnewstoday.com/mn-166/
This drug works to modulate/control the immune system for either genetic / sporadic pALS. It plays important role in inflammation by blocking the activity of cell signaling molecules. In case of pALS, the immune system continues to react to the inflammation, the cause of inflammation is identified as the motor neurons and hence it keeps killing them. But when this closed loop is broken or tuned down by using such blockers, it will promote the survival / development / function of nerve cells.
The above link shows a great outcome! And further I also found that in US, there is a trial related to this drug –> NCT04057898 – here is the link
https://clinicaltrials.gov/ct2/results?cond=&term=NCT04057898
And this is recruiting now! I will definitely try to contact.
Andrew, I have couple of questions for you: 1. How long have you been taking the drug Ibudilast? 2. How do you feel your response to this drug?
Further, the natural turmeric (yellow color spice) also works on the same lines to control immune system and reduce nerve inflammation. Here is how I take turmeric – take 1 spoon of ghee (cleared butter), add 1 spoon of turmeric (powder form), add some black pepper, heat up and mix well, eat this mix twice a day (there is not much taste, you can add 1 spoon honey to this if you like). Mixing with ghee (fat) and black pepper helps in easy absorption. I am also taking Theracurmin – as suggested by Dr Bedlack.
Best regards!
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njguy
MemberDecember 20, 2021 at 3:58 pm in reply to: Using immunosuppressant drugs to halt / slow down ALS progressionHi
I think I would better order Ibudilast from Japan rather than to be on trial, since on trial there will be 50/50 chances to be either on drug or placebo.
@Andrew, Thank you so much for your inputs!
Wishing all the best to you all!
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njguy
MemberNovember 2, 2021 at 2:57 pm in reply to: Coffee and NAD+ — Anyone see any improvement with these two?Nicotinamide adenine dinucleotides, NAD and NADP (NAD+), are indispensable cofactors involved in several redox reactions in all forms of cellular life. NAD+ is an electron carrier which will pick up electrons during the course of cellular respiration. Very important for the cell functions.
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I started with Riluzole 50mg 2/day but after taking for about 4wks, it gave me lot of weakness and lost appetite, so I talk to my neurologist, he suggested to stop for sometime. After stopping I really felt much better. I am thinking of taking 1/day.
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njguy
MemberSeptember 24, 2021 at 4:51 pm in reply to: Member Check In (pALS, caregivers, and other community members)Congratulations David Crellin! And wish you the best!
I was also so scared of lumbar puncture when my neuro had suggested, but it was absolutely painless. Here is my experience: There was a nurse who prep me for the procedure, and they first examine the lumbar spinal region on x-ray and see what gap (e.g. L4/L5) is best, then apply a local anesthesia, and while looking at the screen, push a very fine needle in the gap, and make me lie on side, and collect the CSF (which is coming out on its own, since there is some fluid pressure). Once they collected amount of fluid they needed, they just put a small bandage. During the whole process, I was talking to the nurse and did not at all feel any pain. Need to rest for a few hours lying on back to recover, went back home in about 4hrs.
In your case it is injecting, other parts of procedure may be almost similar.
Wish you all the best!
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Thanks Mark & Carol!
I have ordered Theracurmin, will soon receive that and will start. I am seeing actually good effects of just turmeric + pepper in warm water – three times a day. I am sure Theracurmin will be even better.
For any acid reflux / digestion issues, I am taking all natural Trifala churan (powder) – one tea spoon after dinner, this helps control acid reflux and helps clean up stomach. Any indigestion or GI issue really brings up bad microbiome (Dr Bedlack has talked about this in detail).
Sava, I normally order supplements on Amazon or get from local pharmacy like CVS. Do you have access to Amazon?
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I also quit Riluzole after about 5 wks. I would actually make me feel tired, low on energy, more muscle weakness than before, feel dizzy, loss of appetite, indigestion, etc. About 1 wk now without Riluzole, and I feel good strength, also can do exercise better.
I am also taking supplements like vitamins B12, E, CoQ10, TUDCA, also natural Turmeric powder (Curcumin) with black pepper in warm water.
Question: Anyone taking Theracurmin? is it better than Curcumin with black pepper extract? There is a clinical trial associated with Theracurmin – NCT04499963 – Trial of Theracurmin for Patients With Amyotrophic Lateral Sclerosis (ALS)
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For diagnosis of ALS – neuros follow Gold Coast criteria which is considered most apt at this time –
The Gold Coast criteria for diagnosis of ALS require (1) progressive motor impairment documented by history or repeated clinical assessment, preceded by normal motor function; (2) presence of UMN and LMN signs in at least 1 body region (with UMN and LMN dysfunction noted in the same body region if only one body region is involved) or LMN dysfunction in at least 2 body regions; and (3) investigations excluding other disease processes.
My diagnosis story: I was examined by 4 neurologists over past 10 months, the first one used only 1 and 2 (did EMG and NCS) of Gold Coast above, and came to conclusion of ALS. Whereas 2nd did EMG and NCS and also many other tests (MRI, LP, blood etc) and concluded multifocal motor neuron disease which is treatable with IVIG, I did about 5mo treatments but did not improve the symptoms. The 3rd neuro did very detailed examinations – with additional blood tests, concluded PMA. The 4th one just went by Gold Coast and concluded ALS. The 3rd neuro says I have not any symptoms which qualify for ALS, he mentioned Flail Leg since weakness is only limited to lower limbs. I am soon due for another EMG / NCS to check for any progression. My weakness continues and limited to legs only.
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Hi
I was diagnosed with Progressive Muscle Atrophy (PMA) in Jan2021 which kind of falls under MND/ALS, with slow progression. And while looking for possible stem cell treatment online, I found this:
Anova-IRM in Offenbach, Germany seems to offer stem cell therapy for a few types of neuro degenerative disorders – PD, MS including ALS. I am looking for more references and if found good, it may be worth a try.
Happy kicking ALS 🙂
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Hi All – the chosen ones :)) particularly when being 1 in 100,000!!
Diagnosed with PMA in Jan2021, weakness in my legs started in summer 7/2020 with stiffness in calf muscles on both legs, could not walk more than a mile. Slow progression, first had bilateral foot drop, but used the AFO to walk with balance. But the weakness progressed and now I have to use walker. And for the med treatment: I take Riluzole, vitamin supplements (D, B12, E), CoQ10, Omega etc.
For the subject “the alternative med and ALS”, the med science really throws away any such medicines / therapy unless there are proven records / trials. I have read Dr. Bedlock and really appreciate his views for alternative meds for ALS, and further there are some which are in active clinical trials (like Theracurmin) .
A. Particularly for me, I remember I was taking turmeric tea (teaspoon of turmeric with little salt and lemon in glassful of warm water) regularly till last summer and not sure why I stopped it. And then I started seeing symptoms of weakness. I have started that again for a few days, and I hope to see better effects.
B. I had also tried acupuncture for the stiffness/pain in my calf muscles, and first two treatments it had really helped me, and I could walk with much ease. And the acupuncturist also told me that she can fix the foot drop by targeting S1 / S2 but at that point my neurologist and my wife told me not go further. Acupuncturist was always talking about energy flow and imbalance, which sounded completely out of the world. I think it is worth a try.
C. Also tried homeopathy for a couple of months, but did not actually see any symptoms improvement
D. Also taking some ayurveda treatment, which seems to be helping – particularly Brahmi and Ashwagandha.
For my daily routine, I am doing exercises twice – morning and evening and that really helps keeping my strength. Also helpful are breathing exercise (Pranayama) and some yoga positions and meditation.
There is still another option of herbal treatment, I am waiting to receive one such herb.
The fact that there is no cure available for ALS (from medicine science) does not mean that I just wait for the disease to slowly eat me :0) There may be a cure out there which has not been tried or which may help me to improve! So I am being positive and optimistic!
One more to note: Also engaging mind in learning something new helps building neural network!
Happy kicking ALS 🙂
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njguy
MemberDecember 24, 2021 at 11:13 am in reply to: Using immunosuppressant drugs to halt / slow down ALS progressionHi Jim
Actually there is a clinical trial (recruiting now) which I mentioned earlier. So my doctor says I should go for that. But I am thinking to buy on my own, and for my doctor to prescribe this drug, I need to wait a few weeks due to holidays. One of the Japan pharmacy may not need prescription –> https://bio-japan.net/ketas-ibudilast. The price $88 for 10mg 100 tablets + shipping. But they also offer some discounts. I am working on ordering around 500.
Best regards!
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njguy
MemberOctober 31, 2021 at 2:46 pm in reply to: Have you changed your diet since being diagnosed with ALS?Hi Duane & Susan
sorry to reply to this so late!
I had always been to my primary just for annual check ups, and last couple of years my PCP saw the cholesterol on border line and he told me to be careful, and so I had stopped or reduced on fatty foods – 1% milk, avoiding cheese/pizza and fried food etc. And in almost 1 year of trying to lower my cholesterol, I ended up getting twitching and cramps 🙁
I am back to eating fried food and whole milk. And also Theracurmin, turmeric with black paper in glassful of warm water – 2/day. Twitches seem pretty much under control, and cramps only very rare. Also pretty good rest is very important too.
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njguy
MemberOctober 11, 2021 at 3:47 pm in reply to: Member Check In (pALS, caregivers, and other community members)Glad to hear that!! Would you please keep us updated how you feel / improve on any symptoms?
Wishing you all the best!!
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Janice,
Can you please share details of clinic where you received stem cell therapy? I and my family will be really so thankful to you!
best regards
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Can you please give details of clinic where you received the stem cell therapy?
Thank you!
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This is the clinical trial NCT03268603 – Mesenchymal stromal cells (MSCs) for ALS
There are three recruiting centers Jacksonville, FL; Scottsdale, AZ, Rochester, Minnesota. All three centers will recruit patients as per the wait list, some initial visits needed to the center where recruited first and then actual stem cell treatment to be received at Rochester center. And also I found from one of the center that there are no sponsors, all related expenses like travel, accommodation etc being on patient’s side.
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to moderator:
Not misinformation:) Trying to find the views from this forum which can help me and possibly others!
If you know how difficult is the time for us (me and my family and of course for all PALS) and how desperately we are looking for cure or anything that will bring even smallest improvement to the symptoms!
And we also look for right feedback from those who have got treatment and got better!
Hope you understand!
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Thank you so much for your reply, Jean!
I had found one more – Global Stem Cells in Thailand, they have many videos of the patients, not sure if those are real or actual patients. Also have found reviews which are pretty conflicting.. so it is hard to be convinced..
Thanks again!
Special Note from the Forums Moderator:
Stem cell therapy for ALS is still in the stage of clinical trials. It has not yet been proven or approved as a viable treatment for ALS. Always be cautious of groups who claim to have successfully treated ALS. There is no proof yet. Please do not share medical misinformation with your fellow pALS and members of this Forum.