Blacksheep62
Member
- Joined
- Mar 1, 2019
- Messages
- 12
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MD
- City
- Annapolis
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.
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.