-
Was your initial diagnosis correct?
ALS, as we all know, is a difficult disease to diagnose. Some people are told they have ALS when in fact they don’t; and others are told that they have another disease only to find out months later that it is ALS. It took my cousin, Jessica, a year to get the correct diagnoses. I think if she hadn’t mentioned that our grandfather had ALS, the process would have been even longer. Many people see several neurologist before they accept the diagnoses or they get several opinions. https://www.worldcare.com/2017/04/19/misdiagnosis-als/
Once a person is diagnosed with ALS, they need support, resources and information so that they and their loved ones can plan and prepare.Was your medical team knowledgeable and able to make a correct diagnoses? What was the process and how long did it take. What kind of support or services were you offered?
-
23 Replies
-
Mine was a quick process (lucky, I think!). I went into a foot doctor and asked her why I was walking funny and dragging my foot (classic foot drop). She did a few manual tests, reflex, etc. and said, “I think this is a little more serious…” and, she picked up the phone and made an appointment for me with a neurologist in nearby Tucson. It was for the next day (gasp!) and that physician put me through another set of tests… and lined me up for an MRI, labwork, EMG, etc. Within 3-months all the results were in, and, I sat with the neurologist who told me I had ALS. (fast forward through me peppering her with a billion questions!)
Come to find out I was with the director of the ALS CLinic, and she was a well-respected authority on ALS. I began attending the clinic and followed her advice — and am here 9 years later to share my story!
-
my initial diagnosis was rheumatoid arthritis with chronic fatigue syndrome and later, after I had lost 50 pounds, I was told I was anorexic. I had been very active physically and was athletic, and suddenly was weak. I even asked my primary care physician if I had ALS and he laughed and said no. I asked for a referral to Barnes Hospital and they quickly recognized my disease.
-
Thank you for sharing that Chuck — it pays to get a second opinion!
-
I was just diagnosed with ALS last week and after 12 months that started with bilateral drop foot but mostly my RT foot. My initial diagnosis at the end of October was Guillian Barre Syndrome. El Paso is medically underserved and frankly I had doctor’s argue with me that my RT foot wasn’t a problem. After it was really bad and ambulating on an out-of-town work trip was a problem I finally talked to my chiropractor and he immediately referred me for MRI. I had broken my LT foot in September and he knew I was dealing with ortho docs but…
My family is encouraging me to get a second opinion. Dagmar where in Tucson did you go? We went to the Mayo Clinic in Scottsdale last week.
-
Julie, I was initially seen at the Banner Hospital ALS Clinic, Tucson – – Dr. Scherrer & Dr. Horak. (and continue to go there)
-
has only been 2 weeks since diagnosis and my son who was a very high level athlete and fitness freak started experiencing weakness in the core area which lead to difficultly in walking . 2 trips to Toronto a series of emg ‘s and Mri”s and about 80 blood tests he was finally given a result which has of course resulted in shock and immediate changes to life style.He has now moved in with myself and life partner and many changes have occurred trying to make him comfortable in the home .My biggest concern after reading on the forum is the rapid loss of function occurring . He can no longer walk and now upper body is rapidly losing strength.Christmas coming and family will be visiting any suggestions as to how to handle this would be appreciated.
-
Hello Frank,
I am sorry that your son has been diagnosed with ALS, but glad that you joined our Forum – – we share helpful information and provide support for each other.Since your son was involved in fitness, his first year of symptom onset may seem rapid… but perhaps the change from the ability to run freely to having weak, stiff muscles has made his diagnosis all the more alarming.
Hopefully, he is still doing daily exercise: albeit modified. But range of motion movements are so important. So is staying involved and connected with family, projects and groups. Here are a few of my columns that may be of help.
https://alsnewstoday.com/2019/11/19/formula-wellness-simple/
https://alsnewstoday.com/2019/09/03/smiling-contentment-happiness/
https://alsnewstoday.com/2019/05/28/new-kind-als-diagnosis-approach/
https://alsnewstoday.com/2019/03/12/squats-als-leg-strength-exercise/
-
In September of 2018 I was getting ready for a 5K run for charity, and noticed that I no longer had the stamina I had only a few weeks ago. Also noticed a different sound to my gait as one foot slapped down instead of rolling from heel to toe. By Christmas I had slightly slurred speech, although mostly imperceptible to those around me.
I went to an orthopedist in December & January & had a back MRI. I went to my GP in January and asked him for a head MRI explaining my speech issue, which he couldn’t even hear.
I did have a stenosis at L4-L5, and did go to a back specialist culminating with a L4-L5 lapindectomy on June 6, 2019. My speech was still slightly slurred.
Appointment with a neurologist was in April of 2019 (3 month wait to get an appointment!) He set up an appointment for an EMG the end of June, but it had to be pushed to the end of July due to recovery from my back operation.
The EMG on July 30th, and the neurologist said I had ALS, but also told me that I needed to have a second diagnosis. Eight days later I was at the Healey Clinic for ALS at Massachusetts General Hospital.
I immediately was prescribed Riluzole & Neudexta. Also Radicava, but there was a month delay for that while my health insurance decided to approve it.
I’ve had three meetings over four months with my neurologist, and many correspondences staff at MGH. They are wonderful.
My last meeting with my neurologist, she said that with three data points she can now confirm that I am a slow progressor. Thank God! I am looking forward to participating clinical trials.
So, I am enthusiastic to become a part of the miracle. God working through the hands and minds of the physicians and clinicians and the myriad of support staff (bio-statisticians,, for one).
I am optimistic.
Jon
-
IN SPRING OF 2017 I HAD A “COLD” FOR 3 WKS. WHEN IT ENDED I WAS WEAK ON LEFT SIDE AND HAD SLIGHT SLAP FOOT PLUS SLIGHT SPEECH ISSUE AND MUCH FATIGUE/WEAKNESS. SYMPTOMS SO MIXED WE THOUGHT IT WAS LYME SINCE IT MIMICS EVERYTHING. BLOOD TEST DIAGNOSED IN CA “CONFIRMED” IT. LYME SPECIALIST STARTED ME ON HEAVY ANTIBIOTICS, ETC AND AFTER A YEAR SWITCHED TO NEARBY INFECTIOUS DISEASE DR WHO SOON PUT ME ON PICC LINE AND 1-2 HRS IV’S DAILY! AFTER 9 MO OF THAT I WAS STILL DECLINING AND WENT TO CLEVELAND CLINIC FOR OPINION. AFTER 20 MIN EXAM WITH NEUROLOGIST WAS TOLD, BLUNTLY, THAT I HAD ALS! LATER GOT ANOTHER OPINION FRON HENRY FORD HOSP, MI WITH EXTENSIVE TESTS. THEIR ALS CLINICAL TEAM HAVE BEEN WONDERFUL IN CARING FOR ME FOR JUST ABOUT A YEAR. FRUSTRATING TO HAVE LOST SO MUCH TIME. I CAN BARELY USE WALKER, HAVE POWER CHAIR AND NEED HELP WITH JUST ABOUT EVERYTHING. ANXIOUSLY AWAITING PLATFORM TRIAL. I’M 77
RON SPITLER, MI -
I visited an orthopedist for arthritis in my thumbs. After X-rays, he confirmed the arthritis but told me the wasting of hand muscle at my thumb was not due to arthritis. He ordered am MRI and told my issue was likely the cervical stenosis in my spine and referred me to a neurosurgeon. After two sets of nerve studies and another MRI, I was told by the neurosurgeon that the spinal stenosis was not the cause, nor was cancer and not likely ALS. His recommendation was to wait and see. He even said not to bother seeing a neurologist as they couldn’t tell me anything different. Not accepting that, he said to try University of Florida. Since the wait was a year, I declined that. I saw a local neurologist on my own who saw me, ran no new studies and said he didn’t know and to come back in 3 months. After a second visit and same no real ideas, I insisted on a referral. After another 7 month wait, I finally got into USF neurologist who referred me to the head of the USF Morsani ALS clinic. There new nerve studies led to ALS diagnosis two years ago. It took about 15 months to get the diagnosis. I am limb onset slow progression. I’ve likely had disease for 5 years or more.
-
Hi i’m truly sorry to find myself asking things, i have asked at other sites and i either get shut down or people tell me to follow through. i would post in one of the forums if i’m allowed to but don’t know which one.
nov 2016 pads of feet felt stiff
mar 2017 touching my skin anywhere below my waist makes my feet tingle
apr 2017 fasciculation’s started in my right calf (leg leg feels the straightest), in the next few months they went all over, i take magnesium so they have quieted down quite a bit
aug 2017 dealing with mucus, no allergies but it continues to this day
as time has gone on i now have trouble with saliva , my mouth filling and than i swallow it and the mouth fills up again.my nose runs terrible when i eat.
i can walk but it just feels weird, i was a runner
had a laminectomy l4-l5 in jan 2018 but hasn’t done anything
here’s the worst part of my story
i have been to local neuromuscular drs 2 of them here in st petersburg fl
i have been to oregon science and health
columbia presybterian
johns hopkins
mayo at rochester once
mayo at jacksonville twice
bay pines v a , since i am a vet
67 years old and going on 3 years with whatever is wrong.
i have had no acute on any of my emgs until 2 weeks ago at the mayo, they picked up a few fib potentials they say tied to s-1
what is happening is not normal they diagnose radio-apathy and axons neuropathy but say no als
even started with a shrink because i thought i was letting my mind dictate my symptoms, he was the one that said i should pursue what is wrong. i am really at a loss what to do , so to end this saga , i don’t want to upset anyone and i’m really not looking for nasty replies from people , i feel bad enough posting on sites for als. thank you for reading this and any help with direction would be appreciated . happy holidays to you and your.
Mikael -
I’m glad you decided to post on the forum. As you can see, each member has had a different experience. Hopefully some will be able to share some helpful information or referrals.
Amanda
-
It took about 10 months to get a diagnosis of PLS. I was having tripping & balance issues, fasiculations & weird foot movements while resting. When cold I walked like Frankenstein. Eventually I couldn’t run. Lots of cramping. First, rheumatoid arthritis, then spinal stenosis (thanks to the surgeon for not agreeing and doing an unnecessary back surgery). Finally based on several MRI’S and an EMG, It was PLS diagnosed by a neurologist specializing in MS then confirmed by neurologists at the ALS clinic. This was July 2014. In December 2018 after discussing with a visiting neurologist I was given another EMG and a diagnosis of ALS. I still walk (sort of) with forearm crutches or a rollator. I’ve lost a little strength and coordination in my hands & arms & have slightly affected speech. I still drive (hand controls) and take care of my own needs (have to since my wife has late stage Parkinson’s). So it goes one day at a time.
-
John,
Thank you for sharing. Sadly, I’ve heard of spinal stenosis as a frequent mis-diagnoses and even surgeries. Both of my Aunts had surgery (one on their hand and one on their foot) only to never fully recover and then months later diagnosed with ALS. I’m not sure what their original diagnoses was that warranted the surgeries. My father’s theory (not a doctor) was that the trauma from the surgeries “set” the ALS in action. Both of my Aunt’s journey with ALS was similar. My father on the other hand, refused to see a doctor or take medication.
Amanda
-
Ronald, thank you for sharing your experience on the forum. It sounds very frustrating to say the least. It saddens me to know that many doctors are still unaware of ALS, or what it looks like on the onset. Again, thank you for sharing.
-
Amanda In my case my cervical spine stenosis could have indeed have caused my initial issue. To the credit of the neurosurgeon they recognized that it was not the cause. I think with my very slow progression that the neurologist and neurosurgeon just did not expect ALS. With the fact that we have no cure I can understand reluctance for a diagnosis vs waiting to see how symptoms play out. It’s just very tough on us to have unknown future. We do need better early biomarkers which are more unique to ALS. I was involved with one study to that end.
-
My L4-L5 stenosis was in fact concurrent with the first signs of ALS. I did have pain in my left foot along with pins & needles feeling, definetly caused by the stenosis. The lisping and slurring had nothing to do with the stenosis! When that started, no one else could hear it except for me and my wife (January 2019, one year ago).
I went downhill skiing January 2019 and felt out of control on my left leg. I still thought that the cause was the stenosis, which I’m sure part of it was, but certainly not all of it.
See my post in this topic, dated December 24. It will explain the time line.
So, now one year and four months from the first signs of ALS, I use an AFO on my left leg, and speak much more slowly and with a lisp. I’m turning 65 in March, and had intended to work until I was 70. Maybe I still will, but I’ll just have to see how I do. I am looking forward to new medicines and therapies in the upcoming years.
-
In Jun 2017 I fell down 5 outdoor steps and hit my head on the concrete foundation. Almost immediately I was slurring words. My family physician was away, and when I saw her 2 weeks later she sent me to emerg. I was told I may have had a mini stroke. They followed up with me weeks later and my speech had improved. I sang with a women’s Barbershop Chorus and in late August I was unable to fully pronounce the words or keep up with the beat of our songs. When I next saw my family doctor she made an emergency request to a neurologist. I was scheduled for 2 Nov 2017, the same day my Chorus was in the International Barbershop Chorus Contest. Before I left that appointment I was told I had Bulbar ALS. Within a week I had an in-home visit with a member of our local ALS Society. She provided my boyfriend, now husband and I with a lot of information and support resources. Since Nov 2017 there is no doubt my diagnosis was correct.
-
Amanda
I have no genetic mutation and as much as I’ve raised hitting my head, right front temple, no doctor has made comment regarding a link to onset of ALS. Prior to my fall I was an extremely health, active 66 year old retiree with no signs of anything unusual going on in my body. -
It is only human to look for the “cause” of our ALS… we assume it’s something we are responsible for: tripping, hitting our head, a recent surgery, a new diet, etc. But my get-my-anxiety-under-control rule is to ask: why then doesn’t everyone who hit their head, had surgery, went on a diet, etc. get ALS? No, this is not a cause-and-effect situation.
The trigger for our neurons to misbehave happened waaay before the “event” our minds are pointing to. The ALS symptoms took a while to become noticeable. We need to move on from seeking to blame “some-thing” or ourselves…move on to a state of less anger, worry and anxiety so that our immune system and oxidative stress remain calm…helping our bodies to live with the ALS and/or hopefully heal.
-
This particular forum thread is about “Was your initial diagnosis correct?” . What we theorize the cause of our ALS is an entirely different subject. Mine is likely genetic but funny that’s not a thing I was asked by the first Doctor who looked for diagnosis. It’s my fault maybe as I didn’t realize my dead’s death with FTD was also with mnd. Also my brother who has since died was wrongly thinking Parkinson’s when it ended up MSA another deadly mnd. That background might have helped with my initial diagnosis, not that it would have mattered.
Part of the preFals that I am in will maybe (if they finally find my mutation) help my kids. In the future, early and correct diagnosis might be key to fighting this. -
Hi all, by the way I really feel for you mikael as I am going on 18 months nó diagnóis it’s like a living nitemare not knowing what is happening its madness in this day and age u should have to go through all this, I have muscle wastage on right hand and bad pain have been prescribed pregabalin for pain heavy feeling in my legs have had 3 emg abnormalities in fdi muscle with psw and fib in one muscle but 2nd emg no fib or psw but enlarged mups and reduced recruitment 3rd emg not much showing I have no clinical weakness which is main factor I think? I still have prob with hand have mri of hand not much showing and mri of back and neck, I think it’s a real shame when on some sites people r just plain rude or think u r some some of nutcase I think on this site everyone is really supportive and kind, sometimes u just need somewhere to vent I am just going to kerp going i don’t need counsellor as been suggested I just nerd to no what is wrong with my hand sorry for rambling post ?
-
No. The first neurologist was clueless, and the second neurologist recommended neuropsychiatric counseling…all in my head. Went to see my pcp, who observed a very noticeable change in my speech and gait. She immediately recommended I see a neuromuscular physician. After some simple testing he confirmed ALS and thought that I was about a year into the disease process.
-
My diagnosis of ALS took 9 months. I had lost a lot of weight and was having difficulty speaking. First I went to my primary care doctor and then over the next 9 months went to 2 neurologists and a speech therapist and had a lot of testing done. I went to 2 ALS clinics and both agreed that I have ALS. I have the bulbar-onset ALS which has a worse prognosis than the limb-onset. Only about 25% of people with ALS have the bulbar-onset. Unfortunately the doctors can’t really do very much for this condition. There is no cure and we will only get worse and suffer. I wish doctors gave people money when we have appointments. Then we would all be rich!
Log in to reply.