Recent ALS diagnosis - bulbar issues only so far, ways I've been fighting it and questions:

[Sandy14]

Hello all,

I have to say, I've been reading so many of the "newbie" posts and have found them so inspiring! I thought I'd share my experiences as I'm desperately looking for any suggestions that might help elongate the progression - or perhaps even stop it in its tracks? I am a 56 year old man and I am trying EVERYTHING! After I beat this, I plan to share my experiences with others and hopefully help to build a foundation that would give greater access to these treatments for those less fortunate. Apologies for the length of this post but I'm hoping the extra details will help you answer my questions and hopefully help others who are also reading this.

September 2019 I started to notice some slight speech slurring, only when I had a drink. Over the next few months, it became every so slightly more noticeable, being more frequent very late in the day or if I experienced something very stressful. I saw a neurologist, ENT and also began speech therapy in late December 2019. I finally went to an ALS neurologist specialist back in June of this year and he basically said "I can't diagnose you with ALS yet, but I'm sure that's what you have". Even though all EMG's have been normal, my only symptoms have been slurred speech (which has become much worse over the past few months), occasional difficulty swallowing and twitching. I went on Riluzole back in July as a precaution.

In July, I saw a homeopath who referred me to the UltraWellness Center in Lenox, MA (specializes in functional medicine, comprised of medical doctors). Between the homeopath and the doctors at Ultrawellness, they advised me to go off gluten and dairy (I came back as gluten and dairy sensitive) and added sugar as well as to get my mercury fillings replaced (my mercury levels were very high). I was also diagnosed with TMJ and have been wearing trays during the day and night to help support my jaw muscles (hoping this would improve my speech). I also went off the acid blockers I'd been on for my entire adult life and the statins (which are believed to possibly contribute to ALS, as they weaken mitochondrial cell function)?

Last week, I went to the Cleveland Clinic and met with 2 other neurologists as well as a rheumatologist and GI specialist. In addition to my slurred speech and minor difficulty swallowing, I also have Raynaud's syndrome and the gluten sensitivity, which are both autoimmune issues (and my family has a history of various auto immune issues). This is why I've been vigilantly going down the autoimmune path as well. And I saw the GI because I have experienced intense acid reflux/GERD for decades as well. The neurologists at the Cleveland Clinic, again said what the other neurologists had said - you very likely have ALS. All EMGs were normal, except the one under the tongue which was mild.

Actually, I've felt amazing since going off gluten, dairy, added sugar, statins and acid blockers. The only issue really has been my speech (and inability to control my emotions, I get weepy way too easily these days). I continue to fight, in my head, whether this is actually ALS because I am a very stubborn/competitive man who is not willing to just lay down and give up. I meditate daily and I also go to a Sacrocranial therapist on a weekly basis and an accupuncturist.

I have several questions for all you out there who have way more experience than I do:

1) I continue to work out, mostly on the elliptical machine and using weight bands. I also do planks and wall squats. I'm assuming this is good for me but does anyone think I should not be working out?

2) I have read a lot about NAD+ IV drips being a possible game-changer. I and scheduled to start these next week. Does anyone have experience with these? If you're interested, I'm happy to share some of the medical studies I've read about the positive effects of NAD+

3) I was doing speech therapy for months but recently I've been doing the speech exercises on my own at home daily (blowing into a straw, stretching my tongue in all directions, speaking with a resonant "M" voice and doing tongue twisters). However, this latest neurologist doesn't want me doing speech exercises because "they don't help and only place more strain on your already tired speech muscles". Rather, she'd like me to do occupational therapy that would help me strengthen the muscles. Does anyone have experience finding the right type of therapist for this? Any recommendations because these days we can do the sessions virtually.

4) I am planning to go on Nuedexta and possibly Radicava. Does anyone have very positive or negative experiences with those?

5) Do people have experience using cannabis and has this helped your speech and/or slowed the progression?

6) I see an acupuncturist weekly - he also does very deep tissue massage. Has anyone used a similar approach, and are there specific recommendations as far as what parts I should be asking him to focus on?

7) Has anyone heard of ALS diagnoses that turned out to be something else, such as autoimmune disorders, gluten ataxia or mercury poisoning? Have you heard about people reversing the damage or at least stopping the progression?

8) I notice that it's a buildup of mucous in the back of my throat that seems to always be the precursor to my speech difficulties. That's why I have thought it could be autoimmune or GI related....but do those of you with Bulbar palsy issues also experience the mucous?

9) I'm debating trying to get into a trial; however, it seems to me to be a potential mistake because there are so many different trials, and even if I pick the right one there's a 50% chance I'm getting the placebo - and, more importantly, I'm assuming they'll make me go off Riluzole, Nuedexta and Radicava and they'll probably also tell me to go off the NAD+ IV drip. Since those drugs may slow the progression, I wouldn't want to go off those to take such a low percentage shot in a trial, unless people know of one in particular that is the "Gold Standard" and that I should absolutely try to get into. Thoughts?

Again, thank you so much for all the support I anticipate you will be able to offer me. I don't have to tell you all how stressed I am!

Sandy

 

[Shell R]

Just a few comments on your interesting post:
Acupuncture did not help me at all.
My slurred speech was at the same time that my leg muscles had an odd tingling sensation.
About 10 years ago I stopped consuming caffeine, dairy, sugar, alcohol and wheat for 12 weeks and thereafter gradually reintroduced. I felt marvellous and it solved the bloated gut feeling.
Do keep exercising and keep the muscles moving.
Each person,s body will react differently so its very difficult to label MND/ALS

 

[Nikki J]

Hi sorry you find yourself here. Like Shell my sister found zero benefit in acupuncture and I got worse when I tried gluten free

to answer some questions. Exercise is ok in moderation. My clinic says you have done too much if you are not fully recovered in one hour.

if you have studies about the NAD+ treatments from sources that are not actually promoting it feel free to share

occupational therapy to strengthen what muscles?

there are both research and anecdotes that support nuedexta transiently improving bulbar for about six months it will help your emotional lability too. If you can get radicava it is worth a shot

anecdotally a lot of people have reported benefit from cannabis at least for symptoms.

ALS mimics are not that uncommon and celiac and heavy metal poisoning are 2 known ones. If you have not had 2 opinions from ALS specialists you need them especially as it seems the diagnosis was not totally clear

if you are already on stable doses of meds that are a standard of care for thirty days they are generally allowed in trials. The platform trial which has been much discussed in the research section here is not fifty fifty for placebo. I think it is a one in four chance of placebo. The trial phase is 6 months after which you can enter the open label extension where you will get the real drug for sure. I don’t know if the iv would be allowed

 

[Sandy14]

Thank you Shell! So you first started experiencing speech issues and leg tingling about 10 years ago? How far has it progressed to this point? I believe strongly that staying in good health can only help and I hope it's continuing to help you. I hope you are doing well.

 

[Jimi]

Early in my progression I did acupuncture for a year, twice a week. Didn't seem to help at all. I also spent a year with a very healthy diet that was gluten free and very low in sugar. Didn't seem to help the steady progress. I did loose a good amount of body fat, which probably kept me mobile for a little longer. I continued to work out at the gym, even while using a manual wheelchair. This this didn't change my rate of decline. I had a blood workup. Only problem was a low level of vitamin d. Fixed the d deficiency (which is good for the immune system - important today ). Things still progressing like before. Within 6 months of my dx, I got all my metal fillings removed. Nothing changed. I checked thyroid function. Was a bit low. Compensated for that. Nothing. All in all, I proved to myself that other than my dying motor neurons, I was pretty darn healthy. I wish you luck. Perhaps you can be the rare exception that finds something to help.

 

[Sandy14]

Hi Nikki - thank you so much for your detailed response....I've read several of your comments on different threads and it seems you are beyond helpful to so many here!

To answer some of your questions:

* For what it's worth, I find I always feel so much better after I get my accupuncture/deep tissue massage, and even better after my Sacrocranial therapy.

* I exercise very moderately - unfortunately my Raynaud's has made my toes quite painful during the winter months so basically I do a brisk walk on the elliptical w/ decent resistance for about 45 minutes, 3x weekly. I also do very moderate weight band training and planks and stair squats. I'm never sore afterwards

* Here's links to 3 non-commercial published articles about the positive effects of NAD+: https://www.thehealthedgepodcast.com/wp-content/uploads/2018/11/NAD-Neurodegen2015Sciencereview.pdf

Nicotinamide Riboside: Benefits, Side Effects and Dosage

Nicotinamide riboside — also called niagen — supports many aspects of healthy aging. This article reviews nicotinamide riboside, its benefits, side effects and dosage.

www.healthline.com

Neuronal death induced by misfolded prion protein is due to NAD+ depletion and can be relieved in vitro and in vivo by NAD+ replenishment

The mechanisms by which misfolded proteins trigger neurodegeneration remain unclear. Zhou et al. show that the misfolded prion protein TPrP triggers abnorm

academic.oup.com

* As far as occupational therapy, it would be to strengthen the throat and other muscles used for swallowing and speaking

* Unfortunately, I have been to 4 different neurologists. The neuro generalists have said "we've pretty much eliminated all other neurological possibilities (have had multiple MRI's done), so it's most likely to be ALS, though it isn't ALS yet. The ALS specialists say "it's very likely that it is ALS"

Thank you for the info on how trials work, that is extremely helpful! Thank you also regarding the cannabis, I will likely start on that at some point.

At this point, I will be following 2 pathways concurrently...one, assuming it is ALS is I'm trying to learn everything I can about this and do everything I can to help it either stop, slow or even reverse. The second path, I will continue to explore outside-the-box theories, so long as they do me no harm.

 

[Sandy14]

Thanks Jimi. I'm so sorry to hear how rough your progression has been. It sounds like you've take a very similar approach to what I'm doing. I have read countless stories, and even know a few friends who know a friend with ALS, where the ALS takes a decade or more to seriously progress. I'm hoping all these healthy actions on my end will help move me into that rare category. How long ago were you diagnosed, and how are you doing today?

 

[Nikki J]

An occupational therapist seems like an odd choice. I would think that would be your speech therapist ask the doctor who they recommend if this was your ALS specialist.

the first two references are not research they are review studies. The third was interesting lab research that apparently was looking at prion disease in their mouse model. Good luck with whatever you choose to do but remember a big hurdle for us remains the blood brain barrier

 

[EricInLA]

Sandy - You've put a lot out there, and I admire the extremely proactive approach you're employing to tackle whatever condition you have. I am surprised any neurologist is giving you the "most likely ALS" tag with clean EMGs, but they certainly know more than I do.

Exercise has been a big topic of interest for me. I've always loved being outdoors and playing sports, hiking, biking, etc. I've heard arguments on both sides - it's good for you, it's bad for you. The standard line is that if you recover quickly - an hour or so - than it's fine. That hasn't been helpful advice for me, because even before I had ALS sometimes it would take me a day or two to recover -- for instance, after playing rigorous full-court basketball (which I can't really do anymore). On the other hand, certain exercises don't affect me at all, even now (elliptical machine). My neurologist said exercise was fine, but warned me that "you're not gonna exercise your way out of this". Understood. I continue to exercise as much as my body will allow, because it's good for my mental and (I feel) physical health. And at some point I wont be able to, so I'm going to do it while I can.

The medications, alternative medications, supplements, etc., for this disease are hard to figure out. There's lots of theories and opinions out there. I think you can spend a lot of time on such matters and still not figure it out. For me, I've decided I don't want this to occupy too many of my waking hours - I still have some regular life to live - so I'm going with basic no-brainer advice given to me by my doctors, as well as by smart folks on this Forum. I take Riluzole because it's easy and no side effects, and I'm waiting for the platform trial to start because really smart people are behind it and there's only a 25% chance of getting a placebo. And I won't have to travel far. Other than that, I take a multi, magnesium, and Trazadone to sleep. Of course I will adjust as my symptoms progress.

I should add that I am limb-onset, and you are bulbar, so you will have different needs with respect to meds. I wish you luck in finding treatments that work for you, and will be interested to hear about them.

 

[KimT]

Did your neurologist do a lumbar puncture? Just curious since you seem to have autoimmune issues as well as possible ALS.

I believe in taking care of your general health even when ALS is the diagnosis. Like you, I did plenty of research into supplementation. I even pursued a doctorate (before diagnosis) in naturopathic health and continued to study nutrition at the doctoral level after my diagnosis. I'm limb onset but thought I had swallowing issues early on. Mayo had me do a swallow test and assigned me an ENT. It ended up being silent acid reflux causing the issues. My voice still gets hoarse if I talk too much or eat the wrong things.

If I were you I would get another opinion if my EMG was normal. Also, they might want to EMG your SCM muscle in your neck. They did that with me. At Mayo, that test only checks for active denervation and, at the time, I did not show any. My EMG of my legs, arms, and back all showed active and chronic and that was in December 2014.

After my diagnosis (I was in limbo due to being strong for a woman and only showing lower motor neuron symptoms) I decided to treat with supplements.

If you want to explore this further, there is a Facebook Group called Pills for PALS and also ALSTDI's forum has members who are long-time survivors. Many of them are on a supplement regime.

I also got far more blood test than Mayo did, including complete vitamin, mineral, and heavy metal testing (Spectra Cell Labs) as well as a test of my microbiome. I treated deficiencies first, then developed my own regimen, which changes yearly as new information comes out and according to my needs per blood work.

My legs are weak so my walking has decreased but I can still walk without any assistance. I also found exercising in a heated pool makes me feel much better. A physical therapist helped me with a knee issue and I do daily stretches and meditation. Prior to Covid I got regular massages.

Best wishes.

 

[Sandy14]

Thanks for all this helpful info Kim. I hope you are doing well, it sounds like you've really committed to staying healthy. One thing I misspoke on....my prior 2 EMGs were normal, however this latest one showed fasciculations throughout my body and also some nerve degeneration in my tongue. I will definitely check out those FB groups, thank you!

 

[Sandy14]

Thanks Eric - sounds like you've been staying in great shape. How are you doing these days? Still able to exercise? One thing I misspoke on...the first 2 EMGs were normal but the one I got this past week shows significant fasciculations and also some nerve weakening in the tongue. Funny that you're out in LA and play hoops, makes me think of one of my all-time favorite movies "White Men Can't Jump"! Hope you're doing well

 

[kellysal]

Hi Sandy my story sounds just like yours. I actually just posted a similar question today.Slight slurring with a cocktail for about 12 months. EMG showed clear limbs but positive in tongue . I can feel weakness in arms now . And I'm waiting for another EMG. I have been to Umiami, Holy Cross and MGH. Just started Riluzole after being told by the first 2 Drs it was a waste of time. I did read a post from Nikki saying new studies showed it was more effective than previously thought. I am thinking of taking Radicava but not sure about having a port. I just received a quote from a Regenerative Clinic for Stem cells Cytosomes , peptide therapy ,NAD and Ozone infusions and it costs a pretty penny. Also cut out Gluten and sugar this week. Its very hard to navigate these options and are they effective at all? This site and the members are a wealth of information from those who actually been down this road . Unlike we newbies desperately searching for THE treatment . I will keep you updated if I choose this treatment

 

[Sandy14]

Wow, Kellysal, so similar! I will tell you, fwiw, my ALS specialist at Mt Sinai is discouraging me from starting on Radicava fwiw but I am already taking Riluzole and will also be adding in Nuedexta soon. I will be starting the NAD+ IVs this weekend. One thing I've been warned on these IV drips is it's critical you don't just go to a "drip bar" that's not managed by nurses and/or overseen by doctors. I went to one place that was actually a functional doctor's office and she scared the living cr@p out of me. She was super aggressive and wanted me to start NAD+, Vitamin C and Stem Cells immediately. It costs an absolute fortune, especially the stem cells and I told her I needed some time to think it over. She then went on to hard sell/pressure me like I've never seen before (and I am a salesman by profession)! I later found this chain called Restore that is a national franchise and they are overseen by doctors and nurse practictioners, and best of all no hard-sell. I had meant to ask this group also about Ozone infusions, that was another IV that my functional doctor had wanted me to start (in addition to the C and NAD). Has anyone ever taken Ozone infusions? I know Dr Mark Hyman (the founder of UltraWellness, as well as author of sever books and pod casts) took them himself when he came back from China and had severe heavy metal poisoning.

I hope you are doing well!

 

[Nikki J]

You all have every right to make your own choices as long as you can afford them.

I have been around ALS all my life and have seen a lot of people try a lot of things. For the things talked about here I have not seen people report anything positive in the long term. Initially often no matter what we do we feel transiently better human and normal and why we need those nasty placebos. Stem cells were mentioned. Some very bad things have happened to PALS who tried unregulated commercial stem cells. In general I don’t think it is always true to say it can’t hurt to try. It might.

it is one thing to try targeted supplements - an example is theracurmin for inflammation. Other supplements target other proposed mechanisms. However there are a lot of people out there who are at best misguided at worst evil who target PALS Remember you do have things to lose - money, time and energy for sure. maybe your remaining health