-
When did you first know you were a slow progressor?
How and when did you first learn that your symptoms were progressing slowly? Did someone tell you? Or was it something you realized over time?
-
18 Replies
-
I didn’t realize I was a slow progressor until about 4 yrs after my diagnosis when I attended several ALS events and noticed the difference between myself and the severity of others who had only had ALS a few yrs. The gap widened when I hit the 5 yr. mark and then the 10 yr. mark – – I was still able to walk with a rollator and had minor swallowing issues. At that point, my doctor agreed that I was progressing slowly. I hoped to meet others who were the same as me, but that only happened online. I’m glad we have this forum to meet and chat with each other.
-
I am new to the forum and am a slow progressor. Was not initially diagnosed with ALS until Jan 2025 which was 4+ years since onset of symptoms, in part due to slow progression. For a time it was thought to be CIDP and I received IVIG for 14 months. Genetic test shows the SOD-1 mutation and I just started on Qalsody in April 2025.
-
-
When it was diagnosed in 2023. I figured I noticed the first symptoms back in 2021 which means it started before that at least to 2020.
-
Neurologist told me I’m a slow progressor. I’m still hoping to get stronger legs, or at least plateau.
-
How do you make your leg stronger?
-
-
I started having issues in 2013..started falling..balance was off. Did not get diagnosed until 2018. Was told then I had slow progression. I still walk with rotator around house but use wheelchair out. Can dress myself, eat, talk and still capable living alone with homecare aide 5 days a week that assists with shower, hair, laundry, cleaning and meal preparation.
-
May I ask, what do you do for the other 2 days? Does a family member come to help you?
-
-
I had drop foot, 3/2020. Since, I was told by three doctors that I don’t have any MND, before diagnosis . I can still walk about 20 yards. Things are starting to accelerate, as I am noticing that my whole body is loosing strength. Oh my favorite. Hospice dropped me because I’m not dying fast enough.
-
I’M IN MY FOURTH YEAR. JUST STARTED TO NOTICE SERIOUS CHANGES IN THE LAST 5 MONTHS.
INTENSE PAIN IN BOTH HIPS WHEN I WALK. WALKER HELPS SOME! EATING OK & DRINKING OK.
DROPED FOOT IN1999. LEFT SIDE MUSCLE LOSS. LEFT CALF 14 INCHES & RIGHT CALF 16.6 IN.
OH DID I SAY BOTH HIPS INTENSE EXCRUCIATING TREMENDOUS PAIN WHEN I WALK !!! SEE ALS
SPECIALIST AT NORTHWEST HOSPITAL IN DOWNTOWN CHICAGO. OTHER SMALL PAINS AT TIMES. TREMBLING HANDS HAVE ALSO GOTTIN MUCH WORSE IN THE LAST 5 MONTHS !! I SIMPLY AM GRATEFUL TO GOD I’V NOT WORSE OR EVEN DECEASED !! I LOVE MY FAMILY & FRIENDS !!!!!!!!!
THE BEST TO EVERYONE GOING THRU THIS AND OF COURSE THEIR VALUABLE CAREGIVERS !!
-
Are you able to take pain medication for your hips?
-
Sounds like you are managing your pain and symptoms well. May I ask, do you rely on caregivers or are you doing this alone? Does the up/down of Chicago weather affect you and are you able to get to places easily?
-
-
I am going to be treated at Northwestern in Chicago. My first visit with the ALS specialist is July 9. Can you tell me anything what they do with your first visit or do they put you on medication or I’m so confused? I have no idea and then how often do you have to visit them or do they send you the PT I had foot drop about it year and a half ago and that’s what they thought it was and now is my leg weakness in my right leg after many doctors visits to many different doctors. I finally went to Mayo and they diagnosed it now they’re sending me to an ALS specialist Please help.
-
-
I was diagnosed with Primary Lateral Sclerosis (PLS) in February 2010, and was treated at the Les Turner Clinic at Northwestern Hospital in Chicago. On April 23, 2014, Dr. Ajroud-Driss (my Neurologist) changed my diagnosis to upper motor-neuron slow-progression ALS. I asked her whether it was a name change or a disease change. She told me that ALS was a spectrum disease: at one end is “pure” PLS and the other end is “pure” ALS. I had passed the midpoint, and was on the ALS side of the spectrum.
-
Hi Dagmar, I had my first symptoms in February 2018 while skiing and was
diagnosed in May 2019. At this time my docotre spoke about a possible slow progession. Since my diagnosis, I
have tried many things to slow down the progression of ALS.
Unfortunately without success. Today I take Rilutec and a lot of supplements. Participation in a BIOGEN study in
Utrecht, the Netherlands, did not bring any results either. However, I
now know that I have a gene repeat expansion and that this has only been
detected in about 10 people (out of over 12,000 data sets). Mentally,
I’m doing well and I try to start each day by giving it a chance to be
the best day of my life. Not always – but it works better and better. I
live with my wife close to Zurich / Switzerland. In 2021 we moved from
our house to a apartment, which is barrier-free and ideal for me. We are stil traveling a lot and we see friends – hard to tell you my best place :). I try
to support the Swiss ALS Foundation, started the #step4ALS challenge and
try to get involved in the association, which unfortunately doesn’t
work well. They dont allow outside opinions and do not manage to involve
members in its work. As an ALS patient, you are sitting on a timeline
and you really want to make a difference so that a treatment can be
found. I think that slow progressors can make an important contribution
here, because we have more time. Sincerely, Peter -
I was disagnosd in August 2022. I am still able to walk (somewhat gingerly) and take care of my personal needs. My GP noticed my left pinky shaking and from that sent me to a nurologist. It took two tests before I was diagnosed.
-
First I am not or any way giving medical advise to anyone this is just my story. This sounds crazy but when I passed the 5 year mark I became confused why, why am I still here still alive? Still walking, talking and working. That was 2001. I was showing symptoms in November of 1996. I started on Rilutek in June of 1997 and over the next few years a lot of different pills were added. If i remember correctly I was taking 53 different pills a day. Most of them were from a book about keeping your brain healthy. They included Chelated forms of minerals like magnesium and zinc. Along with potassium and creatine. Different vitamins but no iron. After 10 years of this I just stopped. $16k a year was beginning to be too much. So I told my wife I’m done. I stopped all medications, minerals Drs just everything.
Slow forward instead of fast forward. I haves seen 16 Neurologlist with 13 of them saying ALS/MND while the other say they just don’t know. I have had different treatments for diseases that mimic ALS. None of them helped. I talked one of my Dr’s into doing a muscle biopsy and it showed typical ALS muscle wasting. My muscle atrophy is getting worse but my Fisticulatons have decreased. Dr Alan Pestronk in regards to his Covalent GM1 Antibodies test, NVG’s Electromyography (EMG’s) 8 total over the years and Nerve Conductions study of both arms, legs, hands, tongue and more. I have rounds of IVIG’s (2) about 2 years apart and neither helped me. I began to have a foot drop about 4 years ago and just recently got AFO’s.
I know all this just doesn’t make sense, 30 year next year. I’m living both a nightmare and a dream. All I can say is I try to stay positive. I believe that I must believe. I have heard Motor Neuron Disease (MND) Amyotrophic Lateral Sclerosis (ALS), Charcot-Marie-Tooth(CMT), Progressive Muscular Atrophy (PMA), Multifocal Motor Neuropathy, Progressive Muscular Atrophy (PMA), Hereditary Neuropathy with Liability to Pressure Palsies (HNPP). Godspeed to everyone.
-
I was first diagnosed with ALS September 18, 2019. After having a discussion with my doctor about when my symptoms first started it was determined that my onset had been in the summer of 2008. So to answer the question, I learned of my slow progression at the time of my original diagnosis.
-
I was diagnosed dec 2023. I had very minor, intermittent slurring. No one believed me or could hear it but me.. everyone now says they thought it was just my Massachusetts accent. That was before covid. I was also flying from the west coast to Mass. frequently to help take care of my elderly, not well mom.. a lot of stress and not much exercise.. I had noticed my skiing ability had dropped off and I would miss turns or fall while skiing for no apparent reason, I blamed lack of fitness. I had been a decent and aggressive skier so this really jumped out at me. In spring 2023 may mom passed, slurring got worse, finally brought it up to my GP, he also thought it was my accent but in my frustration it came out enough that he heard it and referred me to a neuro and for an MRI. The Neuro had the same response. He said “so you are telling me you have and dont like your east coast accent”! I have never been intimidated by Mds.. I lost my patience and my calm demeanor…he referred me to a speech therapist. She could hear it right away. Maybe because her ex was from Massachusetts. I also told her about my skiing. She suggested to first neuro that I see a neuromuscular MD. The ALS md thought I was just UMN symptoms but told us she usually could tell right away but could not diagnose me until she did an EMG and NCT. She said I had subtle signs of ALS on the emg.. she went into much more detail. She put me on meds that day. All this only took 4mos.
In Aug 2024 she told me I am slow progressing. I have only lost 2 alsfrs points since the first visit and still sit at 44. I have very slow progressing dysarthria and it’s best not to talk while eating. My mobility is really just balance. I use hiking poles when needed, not often unless I am alone on uneven ground and I will not go down stairs without a railing unless I can hold someone’s had or shoulder. My husband said from the beginning “if this is als it’s the slowest ever!” This was before even seeing the GP. I am thankful every day that my progression is slow.. I find we are back to making plans for the future. When I was first diagnosed, before we knew my rate of progression. My thoughts on the future were “why bother” . I think that was just the initial shock.
Dagmar, thank you for starting this thread. I have also read your info on preserving your voice.. it helped
Log in to reply.