Nervous I have ALS / Just saw a Neurologist

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Jshemnitz

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Hi All,

I have been reading a lot of the posts on this site for the past week and half and decided to finally post my own story.

I have been dealing with a lot of weird symptoms lately and decided to see a neurologist about it earlier this week who specializes in neuromuscular issues and has seen a lot of ALS patients in his clinic.

I am not saying my doctor is wrong, but I still have this horrible feeling inside that I have ALS. He feels very confident I am not dealing with ALS or any other neuromuscular degenerative issues and said he didn't want to order an EMG.

I am in the process of trying to get a 2nd opinion from another neuromuscular doc outside of this practice... any suggestions or am I just crazy to want this?

The weight and overall body muscle loss has been the biggest issue for me over the past few months, and then all of the other symtoms started after it. I know ALS can cause one's metabolism to go into hyper mode which can cause weight and muscle loss. I have been scanned for every possible cancer or other disease that can cause the weight loss as well as a million blood tests too.

All blood tests are normal (see attachment to this post

Summary of symptoms
• General Weight/Muscle Loss rapidly starting in Nov - especially legs, waist, Chest, Neck (down 2 pant sizes) – was 32 (sometimes 33) waist size in pants and then went down to 30 and 30 a year ago and now both of those are too big. The Slim fit part of it along my legs are now super baggy (no changes to diet, workout or loss of appetite)
• Hurt left shoulder at the gym 2nd week in Jan on 6th after doing a triceps press down on a machine with way too much weight accidentally. (haven’t worked out since) Felt pain immediately in shoulder and deltoid area. Noticed weakness in left arm soon after doing 2 arm chest press on a guided machine. Left Arm/Hand Weakness (holding things, dropping things, clumsiness, things feeling abnormally heavy starting soon after– Went to Physical Therapy on Feb 8 and failed a couple weakness/strength test for my left arm -PT saw lots of tightness in both shoulders and neck; I also had some occasional right shoulder pain at this point. Now getting an even higher level of weakness and rigidness in right arm (noticed 2/20 initially); Now Left leg now feels very heavy. crampy and week and it’s becoming more of an effort and finding leg tiredness after just to walk or stand for periods of time; Right leg feeling sore now on lower quad as of 2/22)
• Ton of twitching in back and arms (started 2/20) – kept me up most at night since 2/21; left thigh started 2/22; Right Thigh started 2/23
• Upper back and neck have been the worst pain I have had outside of the shoulders (upper back pain by shoulder blades started in December (on/off) that felt like someone was sticking a stick in my back repeatedly every second or 2 and in hindsight It may have actually been twitching ; everything else was early Jan); Back and neck pain getting much worse 2/25; Guessing the back and neck pain and probably the shoulders are the muscles wasting away and the other joints and muscles around it taking on more of a responsibility to hold myself upright.
• Hoarseness/Nasal Voice/Thick Mucus back of throat non-stop (started early Feb) –nonstop coughing with no other signs of a cold (no sneezing, runny nose, etc) took Mucenex 2/22 AM (Which isn’t helping) after having a coughing fit and almost felt like choking for moment.
• Regular Neck Stiffness especially 1st thing AM - Back & Sides of Neck – was very painful on 2/25. Noticed stiffness in early Feb; Chiropractor noticed tissue loss on left side of neck (towards bottom part) compared to right side (early Feb)
• Left foot discomfort– started in November (feels like something between my foot and sock or sock; Sometimes the foot has a heavy feeling too
• Cramping/discomfort in both big toes and also under arches when stretching out feet
• Blood Markers – Increase in CRP, Decrease in Lymphocyte % & total (and increase in Neutrophil to Lymphocyte ratio, decrease in Creatinine from a year ago, increase in CPK rapidly over last 2 months, Increase in Ferritin, Rapid decrease Total Bilirubin over past year+, increase in Folate (over 20+ maximum range)
• Left side of cheek is all bumpy and chewed up from biting my cheeks (found a big blood blister randomly 2 weeks ago); never had this issue on my cheeks before
• Sleep Apnea diagnosis (moderate) / based on study from late Dec (awaiting fitting for dental device- report showed 88 obstuctive hyponea events averaging 10 sec at a time (also 1 central apnea event of approx. 10 sec)

Here are the doctor notes from the neuro clinic visit:

BP 132/86
Heart Rate 131
BMI 23.65
Height70.75 inches

General:
Well developed in no apparent distress
No Scoliosis, lordosis, kyphosis, pes cavus or hammertoes.
No contractures or joint laxity noted

Neurogoligical:
Speech is coherent and fluent without dysarthia or aphasia.
No face, jaw, palate or tongue weakness or atrophy.
Motor exam:
Revealed normal muscle bulk and tone
There is no evidence of atrophy or fasciculations.
Manual muscle testing revealed MRC grade 5/5 strength througout.
Coordination - complex motor skills revealed normal coordination
Gait: Patient had normal gait. Able to walk on heels, toes and tandom without any difficulty.
Romberg was negative.
Reflexes: Deep Tendon reflexes were 2 at biceps and triceps, 2 at the brachioradialis and 2 at knees and ankles. Plantar responses were flexor bilaterally.

Assessments: patient seen for evaluation of muscle twitching and subjective weekness and concern for ALS. Exam today is essentially normal showing no clear motor or sensory deficits. His reflexes are normal and symmetric. Muscle twitching and aches can be related to a number of factors such as sleep deprivation, stress, caffeine consumption or anxiety. I will hold off on further neurological investigations at this time. I reasurred patient that his presentation is not worrisome for ALS or any other progressive neurodegenerative disorder.

I am a Caucasion 38yr old male as an FYI
 

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lgelb

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I could write a post as long as yours refuting your fears. I don't think that would help. As for your question about a second opinion, I don't see that you need one, but the real issue is, are you going to believe it? If not, it's a waste of time.

Your BP, tachycardia, diagnosis of sleep apnea and anxiety (all of which relate to each other in a way) explain your issues. If the dental appliance does not completely address the apnea, I would encourage you to consider CPAP, which would likely improve your cardiovascular parameters as well, though of course these should be monitored.

There are no red flags in your lab results except the ones you have planted on the spreadsheet. You say your PT confirmed post-injury weakness, but your neuro has not detected ongoing weakness or atrophy.

If you can't get past this obsession, it's time to enter treatment for anxiety.

Best,
Laurie
 

KarenNWendyn

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I’ll chime in here as a retired internist/ rheumatologist.

I see nothing to worry about in your lab test results, yet I see all kinds of comments added. Did you add them? I disagree with the content of those comments. Specifically:

“Decreasing creatinine consistent with ALS”. No. Your creatinine is 0.9 which is consistent with normal kidney function. Sometimes people with low muscle mass can have a low creatinine, but you are blessed with healthy kidneys. Hooray!

“Decreased bilirubin seen in ALS.” That’s a new one on me.

“Small increase CRP from ALS”. That’s also a new one on me. Besides, your CRP result looked fine ( you didn’t include the reference range for that lab, but the result would be normal for most reference ranges).

CK 150 “due to ALS”. CK 150 is normal for most laboratories and has a wide normal range. Even if it were higher, that would be very nonspecific. I saw many people with elevated CK during my career and not a one of them had ALS.

Folate > 20. That’s great!

Ferritin 244 “elevated levels seen in ALS”. That’s another new one on me. Besides, a value of 244 is generally normal.

Your comments on the ratio of neutrophils to lymphocytes are also ridiculous. None of that has anything to do with ALS. Neutrophils can go up if you’ve had a recent bacterial infection. Lymphocytes can go up or down with viral infections. The ratio between them is always changing.

Meanwhile, your neurologist appears to have done a very thorough exam and didn’t find any abnormalities. A very thorough and normal neurological exam by a neuromuscular disease specialist rules out ALS.

So... no ALS here. That’s our opinion and obviously the opinion of the neurologist you saw.
 

Bestfriends14

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This is an excel spreadsheet that you've created. Do you have the original without all your added comments?

In any case, you've not reported anything that is indicative of ALS, which is fantastic. However, with your added comments and lengthy post, anxiety would be the best bet for you to focus on alleviating.

Take good care.
 

Nikki J

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Agree with the above. And in case you are thinking of it please don’t start linking the articles where you think it says all of these lab conclusions. I know some of where you probably got them and you have cherry picked and taken out of context and misapplied them to your situation.
 

Vincent

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Nothing you describe has anything to do with ALS. Global atrophy is more commonly known as weight loss. You went to see a neuromuscular specialist and were told you do not have ALS. Now you want strangers with no medical background to diagnose you with a fatal disease. Does this sound weird? That's because it is. Get help with anxiety. That seems to be your issue.
Vincent
 

Jshemnitz

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Hi KarenNWendyn,

I created the excel summary sheet for all labs that I gathered from several doctors I have seen for varoius issues over the past couple years (and from a couple of different hospitals in Boson) so I just created 1 sheet to keep track of all them in 1 place... and yes I added the extra wording below the particular types of labs where I saw worsening patterns that could link to ALS (

All of the blood markers that I highlighted were basically found through various studies that I read about previously on ALS that talked about indicators of worsensing disease status...and I know the most recent numbers are all in the normal range. I was basically looking more at the pattern of all the labs going down over the past 1 to 2 years so I looked at is as confirmation that something like this could be ALS.

Are there not times that a neurologist thinks the person is fine only to have the person to continue to get worse and they come back for a follow up appt in 2 or 3 months only to find out they actually do have ALS? Every day for the past few weeks, i have felt worse and worse with each passing day.
 
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Jshemnitz

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So my Physical therapist a few weeks ago is the one who saw clinical weakness in my left arm. My neuro saw no weekness in his exam last week. The neuro only ran maybe 2 or 3 different exams on my arm where he pushed or pulled against me to test the strengh of each of the areas of both arms.

The funny thing is that the PT probably pulled or pushed against my left arm in 7 or 8 different way... 5 or 6 of those showed no issues and 2 of the tests showed clinical weekness which is why she thought PT could help me.

At that point, I didn't have any issues in my right arm, or either leg. I now have issues in both legs and my right arm that all happened over a quick 2 week span. My neuro spent maybe 15 min overall with my entire exam.

My PT spent 15-20 min just looking at my left arm and testing it and comparing it to the function of my then normal right arm. I hate to say it., but my PT did a much more thorough exam of my arms than my neuoro did. I think he discounted me for not having ALS the minute I walked in the door and didn't do as thorough of a test as she should have or even what he put in his report.
 
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ShiftKicker

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Hi there-

It really sounds as though you have yourself convinced. There's no way for the people here to reassure you, as you keep coming back with "...but what about..?" answers. If you are absolutely convinced, the people here are not the ones who have any power over your medical care- it's up to you to go back to the doctors to get to the bottom of the issues you are concerned about.

The people here have zero influence in your pursuing a diagnosis and you simply are wasting your time returning to argue with the experience of the members of this forum. Feel free to second guess your doctors as much as you like- that's between you and them. However, please do not dismiss the care and time people have spent providing you feedback here by openly discounting their advice and assistance. That's not the function of this forum- it's here to support those who have been diagnosed with ALS and their caregivers.

It is time to constructively pursue a diagnosis with medical professionals and not spend any more time debating with the folk here. They don't see the pattern of ALS in your reported symptoms, but you are not convinced. Please work towards finding relief for your symptoms via real, in person medical care. Regardless of what you eventually turn up with your doctors, it's important to address the very clear anxiety you are also experiencing.
 

Kristina1

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I agree with everyone else, but I'll add one more thing. Please do NOT place strength testing done by a PT over the clinical opinion of a neuromuscular neurologist who has evaluated you. The average PT has never even seen an ALS patient before. I go to a rehab hospital where the PTs do have experience with ALS patients, and they still barely understand anything when it comes to me, and it doesn't matter how many strength tests they do. The neuromuscular neuro you saw has performed thousands of strength tests on healthy people like you, and on people sick with neuromuscular diseases. They know at barely a touch what they are dealing with. Your PT does not begin to compare.

On the neuromuscular front you've been cleared. If PT sees something, you can follow their advice as to exercises and stretches that will help your overall wellness. Many people do PT to help with routine aches and pains from daily living. It does not mean you've cause for concern about als.
 

Jshemnitz

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I just want to add 1 thing..

During the 15 min neuro exam, he didnt have my shirt off or pants off. He concluded he didn't see any twitching while I was there. My twitching has been almost non stop for the past 2 weeks , basically 1 part of body will twitch over any 10 min interval. It's been in both of my thighs and back and arms. Back and legs being the worst of it. Of course he couldnt see twitching with my clothes covering the majority of my skin that I have had my twitches. If he would have actually have seen something twitch, would that have changed his opinion and not make it the normal exam he talked about. Would that have made him do an EMG?
 

ShiftKicker

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I think this thread has reached its conclusion. Please re-read ALL of the answers you have received already and go back to your doctors if you have any further questions. Thread closed. Please do not open another.
 
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