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curley

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First, thank you in advance for your support and replies in what has been a very stressful & concerning time for me. A brief background of my situation, I am a 40 y/o dad of 2 beautiful little girls. Started expiriencing the following about 2-3 months.

Physical activities running, gym activities I would get an initial burning sensation along with weak muscle fatigue afterwards (shoulders and quads). However, I have not been doing any of these for several weeks. Ran last week and my legs felt very heavy afterwards and was very sore for 3-4 days. I know I should experience these when not doing this for several weeks but not for that extended period of time. Even holding the cell phone to my head I get pain / tired after several minutes (both shoulders).

No problems going up/down stairs, tripping, lifting objects or opening things.

My right arm has had elbow pain for several weeks and the bottom of my forearm around elbow is painful and very weak when I do/lift certain items in a certain position (forearm pain was there long before the elbow issue).

Twitching started in both arms but has pretty much centralized in the right arm (bicep & forearm). Although I do get twitches in the shoulder as well. Still get daily twitches in my left arm (same areas) but not as frequent.

Right hand feels a bit tired some times and maybe a bit weaker than the right.

I can still lift very heavy and carry items without a problem (like a 2 & 3 y/o) and curl 30 lb dumbells for several sets (10 or more each time).

Other weird issues have happened as well but I will not get into that.

Saw my GP who referred me to a neuro.

I had an EMG done (neuro did my left side only , right side was the worse side though). Mild to modrate carpel tunnel in both hands was noted. He said you passed a big test today, but wanted to run a few more reports to rule out other things (MS). I got an MRI of the brain and cervical spine (all good). Although the MRI showed 3 disc herniations (1 impingement, I knew of this one because it happened in 05).

EEG/AEP/VEP were also done (all good).

He also did some minor strength and coordination tests which he said were fine.

I called the neuro after I recieved the report and he was adament that I do not have als but did offer out the # for an als clinic for piece of mind. However, the report cited " EMG REVEALED EVIDENCE OF ACTIVE DENERATION IN C7 & S1 INNERVATED MUSCLES BILATERALLY. I read on here that if the words "active" or "chronic" DENERATION appear on the report it is not good and considered "DIRTY". Is this true? Or should I accept the clean bill of health from the neuro?

I do have another appt. with a different neuro (with EMG) on 5/1, not the als clinic.

I have since been on meds for anxiety and depression which I never thought would be the case for me.

I want piece of mind and my life back. The INTERNET is a sickness in itself!


God bless to you and your families!
 

vickim

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Hello

Sorry for your troubles. I would believe your neuro if I were you. No als. You could have something going on like mysthenia gravis or a vitamin deficiency or a myo pathy or neuro pathy. It may take a while to get answers so be patient. Be happy about no als. Yes searching online is not good and will only add to the anxiety which in turn will add to the twitches.

See the dr on the 1st and go from there. If they agree with the other dr then you should have peace of mind. I am wishing the best for you.
 

curley

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Vicky, Thank you for your response and encouragement! The neuro's diagnosis was cervical myelorediculopathy. He sent me to a neurosurgeon who said I have congenital spinal stenosis as well as the disc herniations but could not say for sure what was causing the twitching.

The active deneration on the report scares me, for I read on here that was not something you want to see on the report. Do you have
any insight on this or know of anyone on this site that would?

Thanks again
 

vickim

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If you have the full report to include the numbers a person on this site named Wright can interpet it for you and give you a explanation. He is very knowledgeble in this area.

There are others here who are much smarter than I am and they may chime in later. The twitching is getting worse from the anxiety and fear. Start a journal and keep track of the symptoms you are experiencing, when they happen, what you were doing, how long they last where on your body and so on. That way when you go to the dr. you have a written time line of the problems you are having. It helps because it is hard to remember things when you are being bombarded by questions. Also write down the questions you have and keep notes on what the dr says.

Remember be patient, some of us here took months even years to get answers. It took me 5 years. Some are still in limbo and waiting. Take care.
 

vickim

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My answer went to moderation and will show up later. Sorry.
 

Uptown

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Spinal stenosis could explain about all of the symptoms you are experiencing Curley. It can lead to long term nerve damage but also random firings in the spinal cord which would cause fasiculations. The MRI report should indicate abnormal sign or signal in the spinal cord as each fire creates an image n the MRI. Many other things could cause the same issues. Regardless, there are literally a million possibilities. Trying to think of the what-ifs won't change the outcome. Unfortunately, you are just embarking on a potentially long journey. Enjoy life but maybe stay up all night before your appointments. It gives you a lot of time to enjoy life. I hope everything turns out well.
 

curley

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Still trying to find an answer to my question......

EMG REVEALED EVIDENCE OF ACTIVE DENERATION IN C7 & S1 INNERVATED MUSCLES BILATERALLY. I read on here that if the words "active" or "chronic" DENERATION appear on the report it is not good and considered "DIRTY". Is this true?

The report also states FINDINGS " RADICULOPATHY'S I C7 AND S1 BILATERALLY"

IS MY ENG CONSIDERED CLEAN OR DIRTY?
 

Uptown

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Would it matter what label is put on your EMG? The most important thing is that the dr says no ALS. Secondarily, you now know you have some spine/nerve problems that are saying the test indicated there are a couple of issues, one in your cervical spine; one in your sacral spine. Did you ask the neurologist what you should do next? I think your doctor knows your history better than any stranger. I would be glad to give you some ideas...but I am not as qualified as a neurologist.
 

curley

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Neuro sent me to a neuro surgeon. Nuero surgeon did not feel the twitching was caused by the disk/spine issues. He would not recommend any surgery at this point but most likely will require it down the road.

My concern is that the emg was only done on the left side of my body and lasted only a 1/2 hour tops. Most of the issues at the time were on my right side. Although I want to believe my neuro that it is not als I am continuing to have symptoms and seems like things are just getting worse. Foot cramping, body is creaking all over, right shoulder is painful to move, right hand gets tired or aches when using the mouse or gripping things to long.
I just want to feel better. No more aching, stiffness, no more TWITCHES. or cramping.
With the "active denervation" on my emg and my continued symptoms I cannot feel 100% about the neuro clearing me (and i want to believe him)

FRUSTRATED
 

Uptown

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It sounds like the doc is saying LIVE with it and maybe one day someone may know what to call it. All your random nerve pain/issues appear to originate in the spine from disc issues. There are so many ways to immerse yourself in what to modify in your life to reduce anxiety and enjoy those two kids. Diet, excercises, meditation, community involvement, church, etc. Heck you could even sign up for an ALS/MDA walk and raise money to help battle this disease in any way possible. The time you are spending trying to convince others what you have won't make the process move any faster.

I just turned 57 and this year I went from a wheelchair to walking a 5k a couple weeks ago for oral cancer awareness. Also helped raise money for MDA. I hurt more places than I care to remember. They told me it was time to go for months but only God really knows that. In the past 10 yrs or so I spent a year caring for my terminally ill mother, went through a rough couple of years with Stage IV oral cancer, had a crock pot accident with 3rd degree deep tissue burns on 25% of my body, lost 50% of my body weight through muscle loss, have lost maybe 1/3 of my voice, struggle with breathing especially at night, cough and choke with every bite, spit up cupfulls of thick goo every few seconds...yada,yada, yada. I have spent countless hrs at doctors appointments trying to convince them I don't have ALS but could benefit from the same treatment protocols as ALS patients. I feel horrible taking up their time and the clinic time because there is such a huge need. In several years of shuffling no single doctor has seen the before/after versions of me so they all think I am just fine and have strength just no muscles. I went from about a 30,000 lb cumulative leg workout to about 200 just to impress them with my strength. Truth is I can keep walking if I keep working at it every single day. 3 weeks is about the point it takes about 3 hrs to loosen me up enough to walk without significant pain.

Don't take this wrong but I only want to give you an idea of how much effort living can be, no matter what you have. We all have something. We both spend a lot of time and effort towards something. I'm sure we both think our "way" is right. :D I just believe spending your time trying to affect life in a positive way benefits you, your family and everyone around you. Should you ever get the horrible diagnosis of ALS, God forbid, you will have spent your time more wisely. Sorry if this is long winded but it was just one of "those" nights.
 

curley

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Uptown - going thru all you have been thru and you still remain positve. You along with many other people on this site are truly inspiring.

I get what you are saying (and you are right), its just easier said then done.

Thank you.
 

Uptown

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Curley, I have not been through anything as difficult as the PALS/CALS here. I just hope you see the beauty of this time of diagnostic questioning. It ain't ALS until they tell you but every day lost chasing an answer will never come back to you. No disrespect intended bit I believe you should try and reframe all this to "it's easier done than said"! Enjoy e wry day as if it is your last, love like there is no tomorrow!
 

lgelb

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Active denervation would be a lot more significant if there were chronic denervation as well. If there was no comment on size/pattern of motor units, that's good, too. Radiculopathy can easily relate to your disk herniations and is not the term used for the death of motor neurons as in ALS.
About the back surgery -- more and more spine surgeons are pulling back because the aggregate outcomes are not great. Active rehab can do wonders. Get referred to a physiatrist and PT clinic that can help you get ahead of the symptoms. Don't wait for a surgeon to flip a switch.
 

curley

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Uptown, my comment by no means was meant to make light of such a terrible disease. Your advice was spot on.
 

Uptown

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I did not take it that way at all Curley. I just hate seeing anyone so fretful and I know how the mind wants to take us to places unknown at times. We always have a choice to enjoy the moment or lose it. I should have squeezed in my synopsis about the year going through Hep C treatment. After hundreds of scans, blood draws, tests, etc., I finally learned at some point I could worry about a million what-ifs and I still may not have what I worried about. I hope your docs zero in something specific enough to find a good course of treatment to give you comfort.
 
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