Old 11-25-2012, 03:37 PM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2012
City: Sunnyvale
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 5
Deepman is on a distinguished road
Deepman Deepman is offline
New Member (Say Hi)
Join Date: 2012
City: Sunnyvale
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 5
Deepman is on a distinguished road
Default Need Advise-Please Help!

Hi,

First of all my heart goes out to everyone that has been diagnosed with this dreadful disease.

I am 34 yr old Male (new father to a 1 mnth old toddler) who has had a rough year with health so far. In Mar of 2012 I went to the ER complaining of chest pain and left arm pain. After multiple ER visits with back, chest and arm pain and a complete cardiac work up I was given medication for high cholesterol and told my heart is fine. I continued to feel discomfort and saw a neurologist in May of 2012. She did a MRI, EMG and everything was normal. I was seen by a rheumatologist, a GI specialist, 3 cardiologist and neurologist, a spinal cord specialist who did his own EMG and everything was normal in tests. However, my symptoms continued and finally I had leg pain. Pain in shins, thighs and foot including fingers. I was sent to a pain management specialist and she did her examination and said I have a neuromuscular issue and she suspected MS/ALS. She referred me to a second neurologist who I will be seeing on Wed.

Ever since she told me that my symptoms have worsened. I have started seeing twitches in both legs, in the foot arch, my big toe and foot has started to cramp. I have body wide pain, upper back pain pain in arms and legs all the way to fingers and toes.

My PCP did his neuro test and he said he does not see any alarming symptoms like the pain management doctor felt but he said it does not hurt to get a second opinion. I have been doing strength tests, like walking on toes and heels, jumping on stairs, lifting heavy objects etc and I am able to do all of them with some minor discomfort.

I am super worried, anxious and hide my emotions for not wanting to make my wife and child anxious. I am more stressed than ever and I am not sure how to handle it any more...and I have stop myself from breaking into tears every time I see my baby..

The neurologist is seeing me on Wed and then is gone for a month on vacation. A

Any input or help or comments on my symptoms is greatly appreciated.

Please help!

D
Deepman is offline  
Old 11-25-2012, 04:25 PM #2 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 5,587
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
♥ Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 5,587
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Need Advise-Please Help!

Did the doctor say what symptoms or exam findings led her to suspect ALS? You had 2 normal EMGs you say you have no weakness and you do have pain. All of these things seem to point away from ALS. EMGS show damage to lower motor neurons early. ALS is not a sensory disease so it does not start with pain . weakness is usually the first sign. I can understand how terrified you must be. Start making a written list of questions for the neurologist.
Good luck and let us know what the neuro says!
Nikki J is offline  
Old 11-25-2012, 05:12 PM #3 (permalink)
New Member (Say Hi)
 
Join Date: 2012
City: Sunnyvale
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 5
Deepman is on a distinguished road
Deepman Deepman is offline
New Member (Say Hi)
Join Date: 2012
City: Sunnyvale
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 5
Deepman is on a distinguished road
Default Re: Need Advise-Please Help!

Hi Nikki,

Thank you for your response. I should have provided a little more detail. The rheumatologist observed some cervical spine stiffness and put me in physical therapy. When I told the pain managment specialist this, she observed my back and made a comment that she sees some postural changes and muscle tone problems in the back. My left side has always been the weaker side...she also mentioned hyperreflexia but she checked it couple of times and said its not that bad...I was not sure what to take from it. She said my left side felt a little weak but that is expected since I am a right handed person.

My PCP completely disagreed and said he does not see any weakness and everything feels normal to him. He said there will always be some diffrence in strength from your dominant side. During my first neuro visit, she found B12 defeciency and I got B12 injections for a while. My PCP checked my B12 levels and moved me to sublingual B12 stating that he wanted to check if there are B12 absorption issues...

I am also on Vitamin D supplements. I have stopped taking the statins for a month now.

I have been taking neurontin 100 mg 3 times a day but does not do much.

COQ10
Vitamin D
Vitamin B12
Omega 3

These are all the supplements I am taking. I have been a health and active person all my life and the last 8-9 months have been tough on me. Thanks again for your reply...

Widespread pain is my biggest symptom. I started observing the cramping since yesterday and it is more dominant in my right leg and arm.

I am not sure what I can do anymore....I was just now able to hop on a flight of stairs and calm myself down....

-D
Deepman is offline  
Old 11-25-2012, 05:51 PM #4 (permalink)
MommyRissa's Avatar
New Member
 
Join Date: 2012
City: Oklahoma City
State: Oklahoma
Country: US
Interest: The kid who spends too much time with Dr. Google
Posts: 38
MommyRissa is on a distinguished road
MommyRissa MommyRissa is offline
New Member
MommyRissa's Avatar
Join Date: 2012
City: Oklahoma City
State: Oklahoma
Country: US
Interest: The kid who spends too much time with Dr. Google
Posts: 38
MommyRissa is on a distinguished road
Default Re: Need Advise-Please Help!

Have you given any thought to fibromyalgia? With multiple EMGs that are clean and nothing alarming on a physical examination, it's extremely difficult to be persuaded that what you have is ALS/MS. There are a lot of things that cause pain. I've had body wide pain and twitching for a month or so now and I'm fine. I've even had the shin pain. I'm not sure why your pain management specialist would even attempt to diagnose you with MND considering your previous clearances. Try to manage your anxiety, maybe try meditation while you wait to find out what's going on, but I really wouldn't worry about ALS and I'm sure that the other members here will agree.
MommyRissa is offline  
Old 11-25-2012, 07:30 PM #5 (permalink)
Alyoop's Avatar
Very Helpful Member
 
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,834
Alyoop is on a distinguished road
Alyoop Alyoop is offline
Very Helpful Member
Alyoop's Avatar
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,834
Alyoop is on a distinguished road
Default Re: Need Advise-Please Help!

After seeing a neurologist and having a clear EMG and clinical examination, I would not trust the word of a pain specialist. Infact I would put a complaint in as she has gone way outside her level of expertise to suggest MS or ALS....none of your symptoms sound a bit like either.

I agree that you have some anxiety, but who wouldnt after being told that. Twitches always get worse with stress and anxiety. When I am upset they are crazy.

Please take a deep breath and make sure that when you see the neurologist, you do not leave his office without getting your questions answered to your satisfaction. Too many people leave the Drs office with more questions than they go in with. Take someone with you if you need support.

Best wishes
Alyoop is offline  
Old 11-25-2012, 08:17 PM #6 (permalink)
New Member (Say Hi)
 
Join Date: 2012
City: Sunnyvale
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 5
Deepman is on a distinguished road
Deepman Deepman is offline
New Member (Say Hi)
Join Date: 2012
City: Sunnyvale
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 5
Deepman is on a distinguished road
Default Re: Need Advise-Please Help!

Thank you all for your reply. I definitely know there is anxiety, and maybe some of my symptoms are related to that. I am hoping the neurologist will put my mind to rest. I have started to feel my palms cramping now and it is very painful. I did some more strength tests today (hoping all the way to the top on a flight of stairs) and was able to do it. I was a relatively healthy person before this and have hardly seen doctors...

Your reassurances definitely help me...I just wish I had answers.

Nikki,

The doctor said she sees some muscle tone issues in the back (my PCP did not seem to think so). She also said she observed hyperreflexia and then contradicted herself by saying, its ok after repeating the test a couple of times. She said left side was slightly weaker than the right, but then she said that is normal since I am right dominant.

My PCP said his left side is also weaker (more than mine) and he would not be too worried about it. I have been doing grip strength tests and pinch strength tests at PT and the numbers are normal.

I am flying out on business tonight to Bos and hopefully will be able to calm myself down...

Thanks so much again for your replies!

D
Deepman is offline  
Old 11-28-2012, 07:02 PM #7 (permalink)
notme's Avatar
Extremely Helpful Member
 
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,664
notme is on a distinguished road
notme notme is offline
Extremely Helpful Member
notme's Avatar
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,664
notme is on a distinguished road
Default Re: Need Advise-Please Help!

Well, first of all--Stop doing strength testing--it CAn increase your pain levels.

Unless your pain management doctor is a neurologist, she should not be suggesting ALS. IF she was concerned, she should have simply given you a referral to a neuro.

Muscle weakness in the back is not at ALL uncommon--and is the #1 cause of back pain in the US. The weak muscles get pulled--physio would go a long way toward helping with that.

Clear EMG means there are no LMN issues. A neuro can do his bit and check for clinical weakness. They are the experts--not the GP, not the PM. A neuro.

At your age, the most likely issue is something in the back or neck. Twitches are NOT an early sign of ALS. Nor is pain. Cramping and spasms can be caused by many things--including those silly strength tests.

Wait for the neuro. Don't write yourself off just yet. I'd bet my last dollar you do NOT have ALS or any other MND.
notme is offline  
Old 11-28-2012, 08:52 PM #8 (permalink)
New Member (Say Hi)
 
Join Date: 2012
City: Sunnyvale
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 5
Deepman is on a distinguished road
Deepman Deepman is offline
New Member (Say Hi)
Join Date: 2012
City: Sunnyvale
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 5
Deepman is on a distinguished road
Default Re: Need Advise-Please Help!

All,

Update:

Met the neuro today and he said I passed my neurological test with no issues. He mentioned he did not observe hyperreflexia or any other clinical symptoms suggesting ALS. When I told him how I ended up with him, he was furious with the pain management specialist for even mentioning something like that to me. He was very pissed and said he would do a EMG/NCV jsut to allay my fears. He had me come back at 4 PM, did a EMG/NCV including my back and said that it looked clean. He said I have nothing to worry about and I would live a long life neurologically. He said he would definitely call the PM doctor and talk to her about this incident...

He said he hoped that this was the last EMG I had to undergo...! He did even want me to schedule a follow up! I was so relived that I cried (yes I did...) . He did say my nerve potentials were high and suggested I take Lyrica to calm down...He mentioned BFS and asked me to drink some Gatorade..

I would like to thank you guys for the support. All of you were wonderful and did your bit to calm me down! I have so much respect for PALS and everyone in this forum. I will do my bit going forward...

-D
Deepman is offline  
Old 11-28-2012, 09:15 PM #9 (permalink)
ottawa girl's Avatar
Very Helpful Member
Forum Moderator
 
Join Date: 2012
City: Ottawa
State: Ontario
Country: CA
Diagnosed: 04/2012
Interest: I have been diagnosed with ALS.
Posts: 1,510
ottawa girl is on a distinguished road
ottawa girl ottawa girl is offline
Very Helpful Member
Forum Moderator

ottawa girl's Avatar
Join Date: 2012
City: Ottawa
State: Ontario
Country: CA
Diagnosed: 04/2012
Interest: I have been diagnosed with ALS.
Posts: 1,510
ottawa girl is on a distinguished road
Default Re: Need Advise-Please Help!

Great news! I am very happy for you. truly.
ottawa girl is offline  
Old 11-28-2012, 10:01 PM #10 (permalink)
Barbie's Avatar
Extremely Helpful Member
 
Join Date: 2007
City: orlando
State: FL
Country: US
Diagnosed: 01/2007
Interest: I lost a loved one to ALS/MND.
Posts: 2,672
Barbie is a jewel in the roughBarbie is a jewel in the roughBarbie is a jewel in the rough
Barbie Barbie is offline
Extremely Helpful Member
Barbie's Avatar
Join Date: 2007
City: orlando
State: FL
Country: US
Diagnosed: 01/2007
Interest: I lost a loved one to ALS/MND.
Posts: 2,672
Barbie is a jewel in the roughBarbie is a jewel in the roughBarbie is a jewel in the rough
Default Re: Need Advise-Please Help!

what a great update! Really, the PM doc was way out of line. the suggestion of ALS to someone without proper experience in the disease is is down right morally and ethically wrong. I think your neuro handled it well and I would have cried too. Good luck to you and enjoy that sweet baby!
Barbie is offline  
Old 11-28-2012, 10:44 PM #11 (permalink)
New Member (Say Hi)
 
Join Date: 2012
City: Sunnyvale
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 5
Deepman is on a distinguished road
Deepman Deepman is offline
New Member (Say Hi)
Join Date: 2012
City: Sunnyvale
State: CA
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 5
Deepman is on a distinguished road
Default Re: Need Advise-Please Help!

Thank you Elaine and Barbie.

I meant he did "not" even want me to schedule a follow up..
Deepman is offline  
Closed Thread

Tags
alarming symptoms, als, arm, back, diagnosed, emg, father, fingers, foot, health, heart, help!, leg pain, mri, neurologist, pain, please help, second opinion, symptoms, tests, twitches, vacation, work, worried


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Advise on what to say, what to do to help Mando015 General Discussion About ALS/MND 13 10-05-2015 09:09 AM
Advise Help! Amber10 General Discussion About ALS/MND 17 03-23-2013 11:09 PM
any advise when it is not FLD? nanette70 ALS and FTD 18 06-06-2012 09:14 PM
Can anyone advise? robg Do I Have ALS? Is This ALS? 9 06-09-2011 03:16 AM
please advise again robert shaw Do I Have ALS? Is This ALS? 2 03-19-2011 11:06 AM
please advise robert shaw Do I Have ALS? Is This ALS? 13 03-12-2011 05:46 PM
Can someone advise please? clh71 General Discussion About ALS/MND 7 02-09-2011 03:38 AM
Can someone advise me? brooksea Current Caregivers (CALS) 22 01-25-2011 11:48 PM
Any advise on a bed? vrt749 General Discussion About ALS/MND 6 10-04-2010 07:43 PM
Please advise again mars Do I Have ALS? Is This ALS? 3 01-14-2010 12:26 PM


All times are GMT -5. The time now is 10:56 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016