Blacksheep62

Member
Joined
Mar 1, 2019
Messages
12
Reason
Learn about ALS
Country
US
State
MD
Good Morning

Prayers and blessings to everyone affiliated with the website and forum and their families.

I am a 47 year male that was in great shape. I am 6ft 2in with weight fluctuated between 198 to 200 lbs. I worked out in some capacity everyday. My only previous health issues were acid reflux . My previous physical all results were in normal limits or better. However I did have some bouts were BP would spike and then return normal. My GP thought the BP issues were due to my stressful job or possibly white coat syndrome. I was an extremely avid runner and cyclist. I understand many challenges that the readers of the forum face a lot has happened in 9 mos and I will be brief as possible.

July 2018
These symptoms began in July 2018. Decided to run another marathon in the fall so I began extra running and was eating a high protein diet and little or no Carbs. One night while up late reading I began feel fatigue and brain fog. I began frequent urinating through the night and day. I would get up literally 4 to 5 times during the The urination frequency was not normal for me. Symptoms progressed, I started feeling extreme fatigue, brain fog and random body pains especially knees sometimes with headaches. I began loosing weight. Weight dropped to 186 during this month, I already had issues with sleeping. My GP was on vacation for 4 weeks so I went to an urgent care to get looked at. Bloodwork was good however had ketones in urine and Monocytes where abnormal. Doctor surmised that I might have been on the end cycle of a virus and did not prescribe anything. She also discussed my diet and said my diet was essentially the same as the KETO diet and I might have put myself in Ketosis thus explaining the weight loss, frequent urination and fog feeling. Told me rest and resume regular diet.

Symptoms continued next several days. I went back to urgent care again. They ran more blood and urine test to include LYME test and ANA Quant. All came back fine. My doctor returned from vacation and advised me to come in, My GP ran additional bloodwork and ordered a CT Scan of abdomen & pelvis, Chest X-ray and Brain MRI. CT Scan showed showed some disc bulging from L3-4 through L5-S1. Slight developmental narrowing of the lumbar spinal canal and Slight Scheuermans condition of the T10-11, 11-12 with no other significant abnormalities noted. Chest X-ray showed No pulmonary disease but likely Scheurmans condition with slight Kyphosis and slight Levoscoliois. Brain MRI Normal. GP told me not to worry control my stress, but wanted me to see a Urologist and Neurologist and possibly Rheumatologist.

AUGUST 2018

Urology exam and test was normal. Doctor told me stop drinking liquids after 7pm

Neurologist exam was normal. Neurologist advised that I have a highly stressful job which may have some implications in this. Said does think I have anxiety issues & weight loss is not attributed to neurological conditions. I asked about the nature of the tests and he said he was looking for signs for Parkinson or NDM like ALS and saw none. If pain continues to call him. While I had no issues with the exam, I felt the Neurologist was dismissive and our interaction was not what I would call reassuring. Symptoms continued with intense pain sometime especially in knees. My weight was up and down. I was not working out at all and in began loosing definition in my opinion.

I then began having issues with my throat and swallowing. I felt increased tightness with mucus in my throat and food was not going down easily. I contacted an ENT friend of mine. After examination he advised he thinks my acid reflux was getting worse & prescribed the magic mouthwash medicine for my throat and upped my reflux medication. My Weight continued to fluctuate. My pants size was a 38. I dropped to a 34/36. The symptoms continued and I contacted the Neurologist.

Neurologist performed EMG/NCV in legs and Spine which revealed that the left sural sensory nerve showed prolonged distal peak latency. The right sural nerve showed prolonged distal peak latency 4.4 and reduced amplitude and remaining nerves were within limits. He deemed it a Normal Test.

My throat issues and symptoms continued. I followed-up with my ENT who scheduled a Barium Swallow/Esophogram Test, which came back normal. During a conversation with the ENT he noticed my Thyroid looked a little large and said, I may want to make an appointment with an Endocrinologist.

Had an Endocrinologist exam with follow-up which were normal. Doctor did say Thyroid was large and ordered a biopsy. Biopsy came back normal. Consulted with GP. He told me he wanted me to see a Rheumatologist. Rheumatologist exam advised that had some tender points. Ordered X-ray of Sacroiliac Joints. Came back normal.

Made appointment with different Neurologist. Clinical examination was normal. Neuro ordered a MRI which revealed small central disc protrusion at L4-5 approximates the traversing L5 Nerve roots bilaterally. In our follow up, the neurologist said she did not see any life threatening issues and attributed symptoms to stress and anxiety. I voiced my concerns, she suggested to ease my mind, she wanted me to see her partner who is a neuromuscular specialist/Clinical Neurophysiologist. He is also a professor at Johns Hopkins. This would be in December.

NOVEMEBER
Symptoms persisted, In a follow-up with the ENT. He directed me to see his friend an ENT/Otorhinilaryngologist at the U of Maryland Medical School. During that examination the Doctor saw some pooling in throat but no signs of overt dysphasia. Doctor said possible Laryngeal hyper function. Did notice tension in strap muscles. Scheduled me for Modified Barium Study and wanted me to work with a speech pathologist, Modified Barium study later conducted with normal results. Swallowing began to get better after methods learned in speech therapy. Doctor concurred and cleared me in January. Doctor stated highly unlikely swallowing was related to NMD.

DECEMBER
Third Neurologist performed his own EMG. Left Leg, Right Arm, neck and back. The NCV showed mild median neuropathy in right wrist consistent with carpal tunnel. NO evidence of large fiber peripheral neuropathy. Reduced amplitude of left tibial motor nerve response which could be related to some muscle atrophy of the abductor hallucis , a partial sciatic neuropathy or lumboscaral radiculopathy of involving the S1. There were mild chronic Changes seen on needle EMG exam of the the left abductor hallicus, he believes it was related to lomboscaral radiculopathy involving the S1 , No evidence of acute or ongoing denervation or evidence of neuromuscular junction transmission defect. Swallowing challenges were not neurological. Additionally he believes I may have CFS or Fibro. Scheduled follow/up 3 mos and Physical Therapy. Doctor said he saw nothing that would suggest a NMD/ALS

Week after exam, I began to experience twitching in left foot arch and left leg. Also right shoulder, back, thighs. They are more prominent at night when I lay down. Continue to have pains through out the body especially in knees and hands. Pain rotates around body. Feet feel tender when walking. Left Knee aches especially inner knee. I also al have tendon popping in legs in elbows during movement. Buzzing in feet and back. Also had bouts of teeth chattering on my left side when sleeping. My Anxiety increased.

January/February

Symptoms continued. Anxiety increased. There were some good days where I felt well. I saw a different Rheumatologist. He said I may have Fibromyalgia of CFS. I had 12 tender points. Suggested I get a sleep study.
Had Sleep Study in February . Was normal. Rheumatologist said issues may connected to lack of sleep and anxiety. His clinical exam showed no weakness or atrophy in hands. Believes follow neurologist plan. Doctor said my symptoms do not indicate a NMD.

My anxiety is off the charts and I haven't slept well in months. My left leg feels weak. Feels like my feet have lost muscle/strength. My legs feel very stiff in the especially in the morning. I haven't fallen or lost any use of any body part Twitching and pain continues. Is it possible that all these doctors missed something.? I have an appointment with the neuromuscular specialist this week..his PA told me he will probably do another EMG since my symptoms persisted. Sorry for the length of this post.
 

dldugan

Distinguished member
Joined
Oct 5, 2018
Messages
203
Reason
PALS
Diagnosis
09/2018
Country
US
State
illinois
You should print this out and send it to the neurologist with whom you have an appointment for a new EMG. Also make certain they have all of your medical records before the appointment. Then come back and post the results of your examination.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,066
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
Also read here: https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html

Urinary issues, sensory issues like "buzzing", pain, etc, an improvement in symptoms of any kind- none of this is part of the pattern of symptoms that indicate ALS. Twitching brings so many people here, but is just like assuming coughing means lung cancer.

Best of luck tracking the cause of your symptoms down, and yes, please do report back the good news after your EMG- you don't report anything that would make anyone think ALS is on the table (as multiple specialists have already pointed out and stated why).
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,229
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
The chances all these physicians missed something ( something being ALS) extremely extremely low. Added to that you apparently have no clinical weakness which is a hallmark of ALS ( though not unique to it) I see no reason why you would even wonder

Your third neurologist with whom you are following up is a neuromuscular specialist at Hopkins? People come from all over to see these guys. You need to believe what they tell you. Let us know after the appointment
 

Blacksheep62

Member
Joined
Mar 1, 2019
Messages
12
Reason
Learn about ALS
Country
US
State
MD
Nikki

Thank you for your insight!! I appreciate you taking the time to even answer my lengthy post. God Bless!
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,490
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Blacksheep, your medical descriptive terminology and vocabulary is
impressive. Your recall of chronological occurrence and symtoms
is also impressive. Do you have a medical background?

Three Neurologists... which none have given the possibility of ALS
a consideration.

I completely agree with Didugan… print your post and send or bring
it with you to the new (?) (4th) Neurologist to save him/her time and
so you don’t forget anything.

After you have seen the next/new Neurologist let us know.

Your 1,450 word, 23 paragraph post has pretty much covered it all
until then. :)
 

Blacksheep62

Member
Joined
Mar 1, 2019
Messages
12
Reason
Learn about ALS
Country
US
State
MD
Thank you so much for taking the time to respond. I apologize for the length of the post. My background is law. I am not usually so open with sharing details of my life like in the post..but I feel in this process based on how I feel vs what the Docs are saying that I’m going crazy. :) this anxiety is a b. I’m actually doing a f/u appt with the last nuero. God bless!!
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
894
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
I used to work building artificial limbs, so I can also talk dirty( medical terminology). One of the truisms we found was if a client came in complaining about the last 7 people he's seen, you are going to become #8 in the next place he goes to. You have been seen 3 times and told you are normal. Why would you believe random strangers on the internet. ALS is a hardware problem. You seem obsessed with being diagnosed with a fatal disease. That is clearly a software issue. We only deal with hardware. If you are still running marathons, you don't belong here.
Vincent
 

Blacksheep62

Member
Joined
Mar 1, 2019
Messages
12
Reason
Learn about ALS
Country
US
State
MD
Vincent
Thank you for taking the time to respond. I appreciate your bluntness. God bless!
 

Blacksheep62

Member
Joined
Mar 1, 2019
Messages
12
Reason
Learn about ALS
Country
US
State
MD
All
I just received the written results of my NCVEMG on 3/5.
It said
-Showed evidence of median neuropathy in right wrist consistent with clinical dx of Carpal Tunnel in the mild range
-No evidence of diffuse large fiber neuropathy
-No evidence of cervical or lumbar radiculopathy
- No evidence of acute or ongoing denervation
All examined muscles showed no evidence of electrical instability. All remaining nerves were in normal limits.

Just wanted to say thank you for your counsel and insight on the matter. I have prayed and continue to pray for all of you. I plan to make a donation to the website.
-
 

Blacksheep62

Member
Joined
Mar 1, 2019
Messages
12
Reason
Learn about ALS
Country
US
State
MD
All

I offer sincerest apologies for troubling you, looking for some perspective.
I was prayerfully moving forward. I had a few incidents which, unfortunelty spun my psyche up (Respectfully, I read the sticky)

In discussing my results with my nuero on 3/10/19, he said he did not test my swallowing in my latest EMG test on 3/2/19. He tested my swallowing (Sternomasclatoid and Trapezius) in December and if I had neurological issues with Bulbar it would have presented already.

My swallowing became more problematic with constant clearing volume, and stiffness in the throat area since my emg. Ive been treating reflux with no success. Feels like my someone hand hands around my neck. (I read the sticky).

Im still having issues with leg pain and weakness in my toes when walking. Only my limbs were tested this last test. Can these issues develop that from quickly from Bulbar since it wasn't tested recently?

I attached my latest EMG's

God Bless
 

Attachments

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
1,796
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
That’s a question we get asked commonly. If someone has ALS with onset in the bulbar region and EMG tests only the limbs, normal results are still adequate to rule out ALS. Someone with ALS presenting in the bulbar area will have EMG changes in the limbs even before they note symptoms in the limbs.

So your EMG was normal and rules out ALS even though your bulbar muscles were not tested.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,490
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Sheep, go back to your Neuro with your newly developed symptoms.

I'd bet he'd give thought to what you wrote...

"Feels like my someone hand hands around my neck." :)

You do not have ALS.
 
Last edited:

Blacksheep62

Member
Joined
Mar 1, 2019
Messages
12
Reason
Learn about ALS
Country
US
State
MD
Thanks for your response. I truly appreciate you taking the time. God Bless.
 

Blacksheep62

Member
Joined
Mar 1, 2019
Messages
12
Reason
Learn about ALS
Country
US
State
MD
All
This morning 1am woke up out of deep sleep feeling fatigued/anxious. My tounge was stiff especially in the back and I coukd not Initiate a dry swallow. I drank some water and my tounge relaxed and water went down no choking. It then stiffened again and has remained all day. Additionally, my right pinky and started twitching which it has never done. Both knees are tight like springs and my left big toe when walking feels like it has no stability. Ive been up since 1am and realize anxiety has kicked in. I have always managed emotions/and stress, but I really am perplexed with these latest symptoms. My Nuero whose a nueromuscular/neurophysiological specialist gave me my last 2emg’s. The latest was 3 weeks ago.Its hard to believe something was missed like bulbar. Is this a stress/anxiety reaction??
 
Last edited:
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

We appreciate your understanding and cooperation!

I've Disabled AdBlock
No Thanks