Can anyone give advise

[Mike]

Hi Carol,  my ALS started as you described.  I had been doing regular workouts three days a week for two years when I found that I couldn’t do my regular pace on the treadmill and instead of building muscle I was actually getting weaker as witnessed by having to reduce the weights for my arm pulls. After several failed medical appointments , I contacted the Mayo Clinic in Rochester for an appointment.   I went through a battery of tests , but it was the EMG that confirmed the diagnosis.  If ALS is confirmed, I hope your able to make an ALS Clinic contact. as it brings your current needs snd future needs under one roof.  Lastly, I want to thank you for your positive words regarding helping others with their journey. Blessings, Mike

[Carol]

Thank you Mike for replying to my post in October. I went for my 2nd emg on October 12th.  More or less same results as 1st emg done 6 months earlier. Saw neuromuscular Dr afterwards to go over results. Few fibs and fasciculations in lumbar and in thumb index finger junction muscle. Those are new this time from first which showed none.  24 muscles done this time..  Emg was done by experienced neuromuscular Dr.   Follow up appt was without Neuro exam to check for clinical weakness. I have weakness of leg that was checked  with emg have had this for months. Hard to raise my leg  can’t to steps etc… Positive bilateral Hoffman sign. Mris show only mild lumbar and cervical radiculopathy. Sorry to ramble . Not wanting anyone to answer yes or no ALS just input whether to search another institution for answers . Neuromuscular Dr said move forward nothing is showing to indicate ALS now. Diagnosis phase is terrible . All other institutions I’ve called need referrals. Not sure I have the energy to start all over again. Thank you for listening. This community is very supportive and caring.

[Carol]

Just wondering if anyone has had good results from using Theracumin for symptom relief of muscle pains etc…

[Mark S]

Sorry for your health and frustrations. I am in same situation. I gave up on answers and shifted focus to finding doctors that listen and try to help when there are currently no good answers.  Symptoms can be treated without certain dx, it’s hard to believe but Drs can do that.  It only took me 3 years Thankfully I found people and I am doing some better.

Theracurmin helped my digestion but that is all.

 

[Bill]

Carol, I’ve been using Theracurmin 2x per day for 3 years. I think it helps my arthritis stiffness but can’t tell if it does a thing for my ALS. All the reviews I’ve read say they can’t tell if it helps.

[Carol]

Thank you Bill and Mark for your replies. Just curious Mark have you been diagnosed with ALS or not yet. 3 years is a long time. I have no answers of why my symptoms have become so progressive never letting up each day. Started in one leg now so much pain stiffness of legs hips back now in arms twitches and cramps in legs all day every day.. Drs talk reassuring well you have radiculopathy of lumbar and cervical. Mild at best mris show. Constant pain and stiffness like this doesn’t fit this. I know that. Hoffman’s sign. Hyperflexia on clinical exam. Emg shows mild changes nothing else. Hard to move on. Don’t know what to do next. I understand get symptom control but my quality of life and decreasing mobility is devastating. No matter what has been ordered it doesn’t help the pain or stiffness. Standing let alone walking is painfully hard. My ? Is do I keep searching out other institutions to get different opinions. How reliable are these emgs early on? Thank you all so much. I don’t feel so alone when I’m on this forum. Don’t have support at home so reaching out to others. That’s not good huh

[Bill]

Carol, my ALS does not have the things you mentioned. I do have spinal stenosis but not enough to do anything about. ALS is widely varying among individuals. I’m mostly on the lower motor neuron disease spectrum so have muscle atrophy weakness but very little stiffness or pain other than age related arthritis. Good luck, hope you find doctor that give you the answers. It’s hard.

[Carol]

Thank you Bill. Very frustrating to say the least to get answers. Wish there was a blood test or head scan to rule out or in ALS. Most all other diseases have diagnostic tools so diagnosis can be relatively quick.  Don’t think their even close to finding something like that for sporadic ALS.  Muscle pain in back and legs from day one has been my complaints with muscle twitches and spasms in legs. Now in arms. The not knowing is horrible. I would like to keep posting with everyone but don’t want to take up anyone’s energy or time when I haven’t been officially diagnosed yet. Thank you all.

[Mark S]

Carol, my possible ALS, 5 EMGs later, has been down graded or is it upgraded to, we have no idea. My problems are almost entirely upper motor neuron. PLS dx guidelines state you have to wait 4 years with no LMN progression.  I have LMN symptoms but no EMG evidence.

On EMGs, they are good at detecting nerve damage, which I don’t have. So no ALS.  At my last visit I asked because I didn’t understand how a muscle with atrophy and weakness could be “normal”.  I was told you can have atrophy and weakness and reduced motor unit activation but that is not diagnostic without denervation.

So I go back in 6 months and probably have another EMG.

 

 

 

[Richard]

Hi Carol,

 

My first symptom was right hand weakness in November 2019 and I was officially diagnosed with ALS in September 2020. Currently has spread to the right arm and left hand and arm.

 

My ALS ”support team” gave me no guidance or reference points. They basically just said that I have ALS and sent me on my way. So, for recently diagnosed people I like to send them some compiled information that I’ve gathered since my diagnosis. You may not need this information if you’re already working with a great team. Some of the information may be a little outdated, such as signing AMX0035.

 

Hopefully the forum members are giving you valuable, useful advice.

 

It’s better to light a candle than curse the darkness!

Rich

======== After Being Diagnosed With ALS ========

Just a few thoughts about the post ALS diagnosis and working with your physician or ALS clinic:

1. Be assigned a case manager, a point person. Someone who reaches out to you, navigating you on what to do, when to do it and how to do it.
2. Be provided an ALS primer. ALS introduction paperwork or at least an identification of websites to go to (in a specific order), so to understand the disease, what to expect, medication, research being done, self-help, etc.
3. Obtain a second opinion or third, fourth, etc. if necessary.
4. Rule out any ALS mimicking diseases, such as Multifocal Motor Neuropathy.
5. Be given an ALSFRS test upon initial ALS diagnosis. If you don’t measure it, you can’t determine the decline progression. Update it daily.
6. Familiarize yourself with ALS initial and advanced symptoms.
7. Discuss the possibility of being prescribed Riluzole.
8. Discuss the possible need for Social Security Administration (SSA) Social Security Disability Insurance (SSDI)
   a. If you’ve received a diagnosis of Amyotrophic Lateral Sclerosis, you qualify for the Social Security Administration’s Compassionate Allowances program.
   b. Request guidance through the SSA SSDI and Medicare process
   c. Discuss the possible need for supplemental insurance for prescriptions, vision and dental
9. Discuss the possible need for handicap parking and apply if applicable before it’s needed.
10. Consider getting fitted for a wheelchair or motorized scooter before you actually need it.
11. Investigate technological options for communicating before the power of speech is altogether gone.
12. Consider your future housing needs.
13. Sign the AMX0035 fast-track petition, calling on the drug company and the FDA to make the treatment widely available as soon as possible.
14. Email your congressmen for ALS funding and treatment legislation.
15. Discuss with your physician any clinical trials being conducted. Working with your physician be presented with what is available and what would work best for you.
16. Develop your own personal (more granular) ALS functional rating scale test, so to more actually measure your disease progression.
17. Recommend to be questioned about family health history, nutrition, lifestyle habits, medications, injuries, surgeries, personality traits, occupations, etc. This should be part of physicians and clinics standard practice. Reason, from what I have read online sporadic ALS has unknown origins. Also, ALS progresses differently in different people. It would make sense that physicians and clinics obtain as much information about the ALS patient as possible to then be used for data mining in a US/worldwide database.
18. Sign up for PatientsLikeMe, a health information sharing website that helps people find new treatments, connect with others and take action to improve their outcomes.
19. Be aware of the “Right to Try” Act, which allows terminally ill patients access to experimental therapies that have completed Phase I testing but have not been approved by the Food and Drug Administration.
20. Discuss if exercising is an option to possibly slow down the disease progression and which exercises you’d most benefit from performing.
21. Since there is currently no cure for ALS all therapeutic options should be explored with your physician or ALS clinic:
22. Get informed about Complementary and Alternative Medicine (CAM) or Alternative or Off-label Treatments (AOT). Even if you only benefit by the placebo effort, you’ll feel better and that’s what we’re all trying to achieve.
23. Discuss trying ALSUntangled recommended therapies. Therapies showing some benefit and are not ”we do not recommend” should be discussed with your physician as possible options.
24. Discuss being prescribed Radacava.

 

======== Websites of Interest ========

/======== ALS Facts ========/
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-lateral-Sclerosis-ALS-Fact-Sheet
ALS Fact Sheet

Frequently asked questions about ALS

A series of checklists with questions to ask your care teams to help get you started.

/======== Symptom Checkers ========/
https://symptomchecker.isabelhealthcare.com/
Isabel – The Symptom Checker doctors use and trust. Developed, refined and tested over 20 years using Artificial Intelligence technologies.

http://www.symcat.com/
A disease calculator that uses hundreds of thousands of patient records to estimate probability of disease. You may have heard of Watson by IBM, which illustrates a trend of computing and predictive analytics in healthcare. We strive to empower people and medical professionals by placing the state-of-the-art in computer diagnosis at their fingertips.

https://www.everydayhealth.com/symptom-checker/
Everyday Health symptom checker

/======== Functional Rating Scales ========/
https://www.outcomes-umassmed.org/ALS/alsscale.aspx
ALS Functional Rating Scale

https://www.mdcalc.com/revised-amyotrophic-lateral-sclerosis-functional-rating-scale-alsfrs-r#use-cases
ALS Revised Functional Rating Scale

https://med.emory.edu/departments/neurology/programs_centers/emory_als_center/_documents/roads.pdf
Rasch Overall ALS Disability Scale (ROADS)

/======== Latest ALS News ========/
http://www.ALSNewsToday.com
ALS News Today is strictly a news and information website about the disease.

http://www.als.net
Latest ALS research news

https://www.sciencedaily.com/news/health_medicine/amyotrophic_lateral_sclerosis/
Your source for the latest ALS research news

https://www.news-medical.net/?tag=/Amyotrophic-Lateral-Sclerosis-(ALS)
Puts ALS medical and life sciences information in reach of people that can make a difference.

https://www.answerals.org/news/
A global project dedicated to developing and implementing a unified strategy to stop Amyotrophic Lateral Sclerosis (ALS) through an aggressively funded agenda.

https://alstreatment.com/

The aim of ALStreatment.com is to offer a comprehensive resource of information about Amyotrophic Lateral Sclerosis, including its causes, associated symptoms and current available treatments which can help slow down the progression of the disease.

 

https://www.connectingals.org/

https://www.connectingals.org/episodes
Connecting ALS is a weekly podcast produced by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.

 

https://www.tandfonline.com/toc/iafd20/0/0

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration publishes research into motor neuron diseases, covering all aspect of ALS and frontotemporal dementia.

 

https://www.nature.com/subjects/amyotrophic-lateral-sclerosis

Nature Portfolio latest research and reviews

 

https://lesturnerals.org/als-news-and-resources/

Advance scientific research into the causes, treatments and prevention of ALS.  Provide exceptional clinical care and support services to people living with ALS, their families and caregivers. Increase awareness and education of ALS.

 

https://pubmed.ncbi.nlm.nih.gov/?term=amyotrophic+lateral+sclerosis&sort=date

National Library of Medicine

/======== Forums, Information, Support and Resource Sharing ========/
http://www.patientslikeme.com
A health information sharing website for patients. Giving patients the opportunity to share both personal stories and health data about your conditions to help uncover great ideas and new knowledge. By sharing information, you can put your disease experiences in context and find answers to the questions you have.

http://www.iamALS.org
Founded by ALS patient Brian Wallach and his wife, Sandra Abrevaya, I AM ALS is revolutionizing how we cure ALS by empowering and mobilizing patients, engaging with policy-makers and offering vital resources for people impacted by ALS.

http://www.yourALSGuide.com
Website helps answer your questions, connect you to resources, save you money, expand your support network, and generally make life with ALS a little easier.

https://www.youralsguide.com/resource-list.html
ALS support and resource list

https://www.cdc.gov/als/Default.html
National ALS Registry offers the chance to participate in research and be counted.

https://www.everythingals.org/
EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation, a 501(3)c organization, bringing technological innovations and data science to support efforts — from care to cure — for people with ALS, by offering a open-data platform for direct engagement with patients, caregivers, researchers and drug companies.

https://alsone.org/
ALS ONE is an unprecedented partnership of world leaders in ALS research and care who have joined forces to help cut bureaucratic red tape to combat the disease more efficiently and effectively for all.

https://www.facebook.com/groups/NOMOREEXCUSESALS

Highly focused on a critical ALS issue of not enough transparency in ALS, as well as our original mission of course- gaining ACCESS as soon as possible to at least three or FOUR critical new ALS therapies that could be saving lives now! We are the original “rock throwing” ALS group that began the ALS advocacy revolution in February of 2019!

 

/======== Clinical Trials, Alternative Treatments and Self Help ========/
http://www.neals.org
Northeast ALS Consortium (NEALS) is to rapidly translate scientific advances into clinical research and new treatments for people with Amyotrophic Lateral Sclerosis (ALS) and motor neuron disease.

https://www.massgeneral.org/neurology/als/
https://www.massgeneral.org/neurology/als/news/all
The Healey Center for ALS is on a quest to discover life-saving therapies for people worldwide who are affected by amyotrophic lateral sclerosis (ALS).

http://www.ALSUntangled.com
Reviews alternative and off label treatments, with the goal of helping people with ALS make more informed decisions about them.

https://iamals.org/get-help/

Living with ALS – as a patient, caregiver or loved one – can feel overwhelming and isolating. From this moment on, know that you are not alone. Wherever you are and whatever you encounter you can find critical resources you need here.

Educate people diagnosed with ALS (PALS) and families about holistic protocols that can slow, stop and even reverse ALS progression. Change Standard of Care for all ALS patients to include nutritional testing, gut and liver function testing and toxin testing, as well as appropriate treatment to correct these.

https://iamals.org/get-help/als-signal-clinical-research-dashboard/
Clinical Trial Dashboard Introductory Video

https://www.neals.org/als-trials/als-clinical-research/what-is-a-clinical-trial-and-why-are-they-necessary-for-als
Clinical Trial 101

 

https://www.als.net/als-research/als-clinical-trials/
ALS.net TDI clinical trial page

https://www.fda.gov/news-events/public-health-focus/expanded-access
Expanded Access – potential pathway for a patient with an immediately life-threatening condition or serious disease or condition to gain access to an investigational medical product (drug, biologic, or medical device) for treatment outside of clinical trials when no comparable or satisfactory alternative therapy options are available.
<p style=”margin: 0in;”>https://augiesquest.org/news/clinicaltrials/</p>
<p style=”margin: 0in;”>Navigating clinical trials</p>
/======== Foundations, Organizations and Research ========/
http://www.alsfoundation.org/
The ALS Foundation goal is improve the quality of life for those living with ALS and to do whatever they can to ease the physical, emotional, and financial burdens that accompany this diagnosis for the men and women in our community who are forced to battle this disease on a daily basis.

http://www.als.org
The ALS Association is the only national non-profit organization fighting ALS on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

http://webnne.alsa.org/site/PageServer?pagename=NNE_homepage
The ALS Association National Office, located in Washington DC and the Northern New England Chapter, located in Concord, NH, work together to accomplish our mission, “To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.” The Northern New England Chapter focuses primarily on helping local patients and families live with ALS, while the National Office focuses primarily on research and advocacy. The National Office also supports the Chapters by providing up-to-date information and materials.

https://alsworldwide.org/
A nonprofit organization that provides free guidance and support to thousands of people living with ALS and their loved ones in the USA and more than 150 countries via email, online resources and phone. We seek to help people live better and longer with ALS.

https://www.mda.org/disease/amyotrophic-lateral-sclerosis
MDA takes a big-picture perspective on neuromuscular diseases, including amyotrophic lateral sclerosis (ALS), so we can work across conditions to find effective treatments and cures. With our collective strength, we encourage early diagnosis and action, support families in hometowns across the country, and uncover research breakthroughs to help everyone with ALS live longer, stronger lives.

https://dataportal.answerals.org/home
The Answer ALS data portal is designed to help you mine this wealth of data and resources, ultimately advancing the development of effective therapeutics for ALS

http://www.alsfindingacure.org/
The sole purpose of the ALS Finding a Cure® Initiative is funding research to find a cure

https://www.nejm.org/search?q=amyotrophic+lateral+sclerosis&asug=amyo
Publish the best ALS research and information at the intersection of biomedical science and clinical practice and to present this information in understandable, clinically useful formats that inform health care delivery and improve patient outcomes.

https://www.alsmndalliance.org/
The International Alliance of ALS/MND Associations was founded to provide an international community for individual ALS/MND Associations globally. Our vision is world free of ALS and we help members thrive by adding value to existing and future associations through curation and creation of information and by acting as a global gateway through which Alliance Members, PALS and CALS, internal, and external stakeholders connect.

https://www.wewillcureals.com/
CURE ALS is dedicated to the mission of raising funds to help find a cure.

https://teamgleason.org/

To improve life for people living with ALS by delivering innovative technology and equipment, as well as providing and empowering an improved life experience.

https://www.alshf.org/
The ALS Hope Foundation funds local and international efforts to find the cause and cure of ALS

 

 

[Carol]

Thank you Richard for the wealth of information.  I feel comfort when I am on this forum and not so alone.. You all have your individual struggles with this disease and for you to take your time to respond is very much appreciated.

[Richard]

Hi Carol,

 

My pleasure ?

 

One more thing…When trying to find the latest ALS treatment news, Google searching on ALS treatments can return an uncountable number of results.  A lot of the returned results can be years or even decades old, basically useless information.  In order to see the latest and greatest ALS treatment news you can try one of two Google searching options:

 

In the Google search window enter (every day just change the date to yesterday’s date)

after:2021-11-12 ALS treatment news

 

or

 

In the Google search window enter:

“ALS ” treatments

Click on “Tools”

Under “Any Time” select “Past 24 Hours”

 

I then review the Google returned results under All, News and Video.

 

The above isn’t perfect but it will help weed out old ALS treatment information that unfortunately never came to fruition.

 

Rich

 

 

[Carol]

Thank you Rich!

[Astrid]

Thanks for your help and advice?

[Carol]

Just wondering if anyone recently has made a first time appointment with neuromuscular or neurology without needing a referral?  Also just curious if anyone has had low vit d levels? Some info I’ve read leads to initiating and or progresses neurodegenerative diseases.