Convinced

[Closer0043]

I am 55/male, and like a lot of people here, am convinced I have ALS. I didn’t even consider the possibility until the first week of January after going to the ER twice in 4 days due to weakness, constipation, and loss of nerve pain that all of a sudden went numb while lifting weights on New Year’s Eve. I felt a burning in my upper back / lower neck area while doing standing curls. It also happened 4 days later. That’s also when the fatigue set in. At first, I was concerned about pancreatic cancer as I recently lost 2 uncles from that, but my CT scan of my abdomen was clean. Every organ came back perfect. 2 days later I returned because I had numbness and tingling on my face and thought I was having a stroke. CT scan of brain was clean. Then came the rabbit hole. I basically had every symptom of ALS on the Mayo website. A few days later I went to my doctor who referred me to a neurologist because he said he couldn’t discount my symptoms even though I was easily able to pass the medical strength test.

I got in an University of Chicago luckily in 2 weeks as the neurologist close to my home had a 6 week wait. I was still feeling horrible when I saw Dr. Rezania for the first time. I told him I am convinced I have ALS, and he kind of laughed and said, oh you’re convinced are you. He gave me the same medical strength test, and said I don’t have ALS. The only thing that concerned him was my big toes couldn’t feel his vibration tool. He ordered an MRI of my thoracic and cervical spine as I already had a lumbar MRI from my doctor a week ago. Plus he referred me to a spine specialist. He also scheduled a NCV/EMG on 1/31/24.

Brain MRI
Cerebral parenchyma: Age-appropriate global atrophy with symmetrical and proportionate sulcal and ventricular enlargement. There are patchy white matter T2 hyperintensities which may indicate small vessel ischemic changes.

So my lumbar MRI shows
Grade 1 retrolisthesis of L5 over S1. 2. At L3-L4: Moderate left foraminal narrowing. Moderate bilateral facet arthropathy. 3. At L4-L5: Severe focal spinal canal stenosis. Moderate bilateral foraminal narrowing. Moderate bilateral facet arthropathy. 4. At L5-S1: Severe left and moderate right foraminal narrowing. Moderate bilateral facet arthropathy.

Thoracic MRI
FINDINGS: The thoracic spine is in normal alignment. There are scattered endplate degenerative changes with chronic appearing Schmorl's nodes. The vertebral body heights are otherwise maintained. There is multilevel disc desiccation with mild to moderate disc height loss. The marrow signal is heterogenous without aggressive marrow replacing lesion appreciated. There are multilevel mild degenerative changes including trace disc bulges and protrusions scattered throughout the thoracic spine, most prominent at T3-T4 where there is mild effacement of the ventral CSF sac. No significant spinal canal stenosis overall. There is moderate bilateral neural foraminal stenosis at this level. There are scattered areas ligamentum flavum thickening, most prominent at T8-T9 where there is mild effacement of the dorsal thecal sac. No high-grade spinal canal stenosis. Scattered mild multilevel neural foraminal narrowing.

Cervical MRI
C4-5: The disc is degenerated with loss of height and T2 weighted signal. There is diffuse posterior protrusion without narrowing of the thecal sac or exiting nerve roots. The posterior facets are degenerated with narrowing of the neural foramina. C5-6: The disc is degenerated with loss of height and T2 weighted signal. There is diffuse posterior protrusion with narrowing of the thecal sac but no mass effect upon the cord. The posterior facets are degenerated with narrowing of the neural foramina. C6-7: The disc is degenerated with loss of height and T2 weighted signal. There is diffuse posterior protrusion without narrowing of the thecal sac or exiting nerve roots. The posterior facets are degenerated with narrowing of the neural foramina.

My wife was actually happy after reading these reports as she figured pinched nerves and many issues with bulging discs putting pressure on my spinal cord. Of course when I see my neurologist and spine doctors, they basically say the reports are not as bad as the MRI shows. So I go to PT, which like a chiropractor, helps for about 2 hours after each session. I go back to the spine doctor after 6 weeks of PT, and he says there is nothing else he can do for me since I’m not in that much pain.

I have also had every blood test to rule out other things. I saw a rheumatologist who said she doesn’t thing I have anything autoimmune since my neurologist already ordered all the necessary bloodwork before seeing her. The only bloodwork that was abnormal was my lymphocytes dropped below normal along with my eosinophils, and my neutrophils were high. All my doctors said it wasn’t anything to be concerned about. I also have a couple of nodules on my thyroid that are moderately suspicious according to an ultrasound. I am supposed to have a biopsy on my thyroid next.

A little background on me. I am a baseball player who averages 75 to 100 games a year. I have pounded my body insanely over the past 20 years. I have 2 resurfaced metal hips, 2 repaired rotator cuffs, and had 4 other orthopedic surgeries in the past 14 years. The last being very recent when I had a partial knee replacement on 11/21/23. The rehab went well, and I graduated 2 days before I lost power at the gym. I can still do a few things workout wise, but am getting a littweaker every week. Even long walks are getting frustrating which is disappointing as I do that with my wife, and now she is going alone if I’m not up to it.

I started noticing weakness probably about a little over a year ago in my right hip/glute/thigh area. I could only split squat about half the weight I was used to, but figured my metal hip might have been wearing down after 14 years, I’m getting older, I have sciatica in that hip, and haven’t been working out as much as usual. All these reasons explained why I just kept playing baseball even though I was noticably not running as fast or hitting the ball as far as usual. I am the classic play through the pain guy. I just started taking a 3rd Advil before games, and frequented ice baths after games. Looking back now, I wish I would have quit or cut way back about 5 years ago.

I have been tracking my symptoms and the main one in fatigue. My muscles most of the time get very tired when trying to strengthen them. Plus, I am always tired. Before you say it, I don’t need a sleep study trust me. I have a fibit that tracks my deep and REM sleep and I never have gotten more than I have lately. I also get night sweats, my hands have some numbness mostly the pinky and ring finger these days, my toes are worse, but that started about 2 years ago. It always seems funny to me when expert doctors say they can’t figure out why my feet are numb when I have a lumbar dignosis of severe lumbar stenosis. They don’t even consider it even though I have no signs of diabetes or heart issues. My upper body strength is about a 6 out of 10 and lower about a 4. I also started having problems over a year ago catching a deep breath when exercising. This could have started 2 years ago actually. It would go away and return with no explanation. I would notice it on sprint day when I would get up 12.5mph on my 35 second sprints. Just couldn’t get that deep breath. The twitching didn’t start until the weight lifting incident and is still here. It is so random and everywhere, I never know when to expect it. It was all day at the beginning though. Now mostly in mornings or sometimes at night. Itching was also worse in beginning and looking back I think it started before the incident. Ear ringing actually started after I started using my neck traction device that my spine doctor gave the ok to use. It is pretty constant now ang gets much louder when I stretch my neck to the side. Either side makes it happen. I had dizzy spells in the beginning and occasionally for the past couple of years, but that has not happened for awhile. I had bad constipation after the incident, but that has subsided for the most part. I still get a little nausea occasionally. I might take a little peptol bismol every 3 weeks. I have very warm hands and my fingers look like I’ve been swimming after carrying something. My feet were always cold, but are usually hot lately. I had erectile dysfunction after the weight lifting incident for about a month, but that is ok now. The weirdest thing washow all of my nerve pain just went away in the beginning, but it has come back which makes me happy. My muscles still feel like they want to cramp when I use them. Occasionally I get pressure above my left eye. It’s not really painful but bothers me. Recently, I am starting to feel pain in some joints mostly on the right side of my body. I know have a torn right rotator cuff, but now i can really feel it. My right knee is also arthritic and is starting to give me pain.

So here are my NCV/EMG results. Just note that my neurologist stated he wasn’t running this test for ALS, but because of my neuropathy. It basically says I have mild sensory axonal polyneuropathy. I saw a second neurologist close to home who also gave me that strength test and said he agrees with my other doctor but called it peripheral neuropathy and said they don’t know why I have it and probably half of the cases are idiopathic.

Summary: Skin temperature was maintained at ? 32ºC. Right and left sural sensory responses had normal amplitudes with borderline slow conduction velocities (CVs). Right ulnar sensory response had normal amplitude and normal CV. Right radial sensory response had moderately reduced amplitude with borderline slow CV. Right peroneal, left tibial, and right ulnar motor responses and their F-wave latencies were normal. Needle examination of select RUE muscles (deltoid, biceps, triceps, FCR, FDI), LLE muscles (TA, MG, VM), and right paraspinals muscles (C5/6, L5/S1) was performed and all muscles tested were normal. Conclusion: This is an abnormal study consistent with a mild sensory axonal polyneuropathy. There is no electrodiagnostic evidence for right cervical or right lumbar-sacral radiculopathies at this time. ______________________ Reza Danesh, MD Clinical Neurophysiology Fellow This test was done under my supervision and I personally reviewed the interpretation of the study. _____________________ Kourosh Rezania, MD EMG Attending
Sensory NCS Nerve / Sites Onset Lat Peak Lat Pk-Pk Amp Distance Velocity ms ms µV cm m/s
R Ulnar - Dig V Wrist 2.29 3.02 14.5 12.5 54.5
R Radial - Snuff Forearm 1.93 2.55 10.6 9.2 47.7
R Sural - Lat Mall Calf 3.65 4.43 6.2 13.5 37.0
L Sural - Lat Mall Calf 3.33 4.32 6.0 12.5 37.5
Motor NCS Nerve / Sites Onset Lat Pk-Pk Amp B-P Amp Distance Velocity Dur. ms mV mV cm m/s ms
R Ulnar - ADM Wrist 3.07 19.9 12.9 6.0
B.Elbow 6.61 18.7 12.0 20.3 57.3 6.4
A.Elbow 8.39 17.4 11.6 9.8 55.3 6.6
R Peroneal - EDB Ankle 4.11 5.6 3.9 7.2
FibHead 11.77 4.5 3.5 32.1 41.9 8.6
L Tibial - AH Ankle 4.43 19.2 12.5 7.1
Knee 14.74 16.9 11.2 42.1 40.8 8.0
F Wave Nerve F Min Lat ms R Peroneal 58.80 L Tibial 59.90 R Ulnar 27.76

Needle EMG EMG Summary Table Spontaneous MUAP Recruitment Muscle IA Fib PSW Fasc Other Amp Dur. Morphology Pattern R. Deltoid N None None None None N N N N R. Triceps brachii N None None None None N N N N R. Biceps brachii N None None None None N N N N R. Flexor carpi radialis N None None None None N N N N R. First dorsal interosseous N None None None None N N N N R. Tibialis anterior N None None None None N N N N R. Gastrocnemius (Medial head) N None None None None N N N N R. Vastus medialis N None None None None N N N N R. C6 - C7 paraspinal N None None None None R. L5 - S1 paraspinal N None None None None

 

[Nikki J]

Numbness and tingling are not ALS symptoms. ALS is a motor disease and you report sensory symptoms. You do not have clinical weakness and had a normal neurological exam except for one sensory finding which again points away from ALS.

Your emg was normal your ncs showed sensory neuropathy which again are two things pointing away from ALS

2 neurologists agreed that you have peripheral neuropathy and don’t have ALS. Noone here will say differently. Your tests, your clinical exams and your history all say no ALS.

 

[Closer0043]

Thanks Nikki, I have read many of your replies over the past couple of months. I have a couple of questions though. It seems that every thread on this forum gets closed before there is a final diagnosis. Does the original poster just stop coming back? Or do they get switched to a different forum if they are diagnosed.
I think everyone knows a clean EMG means no ALS, but I think everyone knows there are many cases where that result changes over time. I love your positivity on this board, and thank you for your dedication. It just gets so frustrating when you feel like your entire body is broken and every doctor tells you nothing is wrong with you.
It’s tough when a neurologist tells you I assure you that you don’t have ALS and then I have to tell my wife or your family that I don’t have the energy to go anywhere. It makes me look like a baby. Although, I am lucky and have a very understanding wife. She is trying to get me to a different spine doctor for a second opinion, but I really don’t want an unnecessary back surgery.

My next appointment with my neurologist isn’t until the end of June so I guess I’ll find out more at that visit. I’m sure I can pass the medical strength test right now, but. I also think a 12 year old girl can pass that test. I also just read an interview with ex pro football player Steve McMichael who has ALS and he said his first symptom was tingling down both arms. I guess only time will tell.

I also read a lot about living life to the fullest, but I am kind of frozen in time right now. I have just enough energy to do basic things like some lawn work, and go for some walks, but it’s crazy to think that last year at this time I was in the gym or practicing baseball getting ready for another season with no idea what was coming.

 

[Nikki J]

A 12 yo girl may pass strength tests but PALS can’t. Yes most CIBALS posters stop coming back. It is frankly annoying because it is helpful to see what happens

Re Mc Michael. I went and listened to his initial interview He said his arm went dead. Dead was his exact word. Not tingling and one arm. It is unclear what he meant exactly but he went on to say when he went to the neurosurgeon thinking it was his neck the doctor lifted his arm and it dropped. In other words it was profoundly weak and that he had tests and they found ALS. NOTHING like your story

As we constantly say those people with a changing emg are primarily upper motor neuron dominant with abnormal clinical exams. This is why we say a normal emg and a normal clinical exam means no ALS.

You are free to disbelieve us. You are not free to argue with us. You posted. You got a reply.

 

[lgelb]

100% , reread the first sentence of Nikki's last post.

Since you have a mild peripheral neuropathy, it may be worth asking your PCP or neuro for a referral to a hand therapist who can help you maintain the strength/flexibility of any muscles that you may have unconsciously be favoring/resting due to unusual sensations, and suggest exercises/self-massage to minimize impact on your daily activities.

Nobody told you there was "nothing wrong." They said what is wrong isn't ALS or spine damage that requires surgery (I'd stay away from most chiros, though), both of which are super pieces of news.

 

[Closer0043]

I wonder how many people are thinking like I am at this point. This might be unrealistic, but still feeling like I have the worst diagnosis forthcoming, I can’t help but think that if I would have stopped playing so much basball about 5 years ago when I first started feeling my right lat muscle was not responding to exercise, I could have avoided completely damaging my central nervous system. Playing so much baseball with so many repetitive motions for 50 years seems ridiculous in hindsight. Not to mention, playing the last 7 years with 2 metal hips, and not being able to play a game at all without ibuprofen. I realize our medical field still states they have not discovered the cause of this terrible disease, but there are studies that show baseball players are twice as likely to be diagnosed and football players are 6Xs likely.

I also wonder the percentage of people who’ve been diagnosed have years of spinal issues, concussions, or other contributing factors? This is why they call it a medical practice. They have a long way to go.

I really wished I could trust doctors more, but I’ve actually had a doctor lie to my face 14 years ago whe I asked him about hip resurfacing. He stated I would have to fly to England to have it done because it wasn’t available in the USA. It was FDA approved about 3 years before his statement. I remember his 2 young medical students looking at each other after he told me that lie. That’s also why I didn’t get the covid vaccine when my doctor asked me to get it 2 weeks after recovering from covid. Thank god I resisted that. My sister in law lost her eyesight after she was vaccinated. Doctors actually confirmed that was the reason. Crazy!

I have read that peripheral neuropathy is a very common early misdiagnosis of ALS. I feel like my right side is getting weaker every week. Yesterday my jaw started getting stiff while chewing a protein bar, and again while walking fast on a treadmill. Luckily, I have not had any swallowing issues, but my right leg is looking very cut. I am starting to see every little muscle. I also forgot to mention the Myclonus when falling asleep. It was really bad after my weightlifting injury where it would wake me 3 or 4 times every night from sudden full body jerks, but then it went away for awhile, and is now back a little. I’ve heard of that being a symptom of Parkinson’s but any link to ALS?

As always, I appreciate the dedication on this message board.

 

[Nikki J]

We really can’t help you here. This subforum is to answer basic questions from people going through a diagnostic process. You have been cleared of ALS by two neurologists. I understand you do not believe them or us.

I hope you can find a doctor you trust ( but please don’t turn into a person who goes from doctor to doctor seeing 7 or more. Repeating emgs over and over. We have seen those people.

I am closing this thread because we answered what we think. You disagree which is your right

I wish you luck