11 Months of Confusion and Stress... Please Help

[ricea]

Thank you all for taking the time to read this. I have been looking for answers and obsessing over how I “feel” for the past 11 months. I am a 48 year old male who has been active and athletic since childhood. I am dealing with some serious neurological issues but I have yet to determine “how serious”. Contending with the confusion and uncertainty of my peripheral neuropathy symptoms has been an ongoing challenge for me. Although I have become better at coping with it lately, last summer sleepless nights and panic attacks were the norm.
Things began to change for me in May of 2016 when I realized that my left calf was showing signs of progressing atrophy. I wasn’t too surprised with this because I had been dealing with spinal issues for 9 years prior and was aware that a L5/S1 disc injury and ensuing sciatica in 2007 had caused weakness and pain in my left calf and glute. Nevertheless, I decided to get my calf looked at as a precaution. The only other symptom I had noticed up to that time was an occasional “tight”, altered feeling in my left upper arm area.
Since May I have had appointments with different neurosurgeons, neurologists, and a chiropractor. I have had mri’s, x rays, and emg’s. I was shocked when I was informed that my nerve problem did not appear to be stemming from my back issues and that I was not “surgical”. This was despite the fact that I have mild to moderate foramina narrowing, facet arthritis, degenerative disc disease, and some posterior osteophyte formation in the lumbar and cervical region of my spine.
I have seen three different neurologists. The first and the third one would not rule out ALS, while the second one scoffed at the possibility (he never saw an upper body emg). I’ve also had a chiropractor tell me that he doesn’t think I have ALS. Based on these opinions, my heart wants to believe that I don’t have ALS but my mind tells me that there is a chance. I also want to stress that the neurologist I am with now thinks that ALS is an unlikely possibility due to the fact that my emg reveals that whatever is going on has been going on for a long while, but again, he will not rule ALS out.

I have a sister who regularly experiences pins and needles in her ankles and feet. I have a brother who is diabetic and has one atrophied calf, atrophied hands, skinny ankles, constant numbness in both calves, and a hand tremor. He also cannot walk any distance at all on his toes due to weakness on the L side. Due to these genetic similarities my neurologist thinks that a DHMN such as CMT (Charcot Marie Tooth disease) is a possibility. My DNA was tested for CMT recently and the test came back normal. However, the test that was completed does not test for all of the CMT variations.
Here are some facts and symptoms that to me, are consistent with ALS:
1. I have an abnormal upper and lower body emg
2. I have atrophy in both calves (L>R) and I wonder if my quads are getting smaller too
3. I experience muscle twitching
4. I experience occasional cramping in my quads, hamstrings, and arches
5. My right lower quad frequently does not feel robust and strong. I feel like it’s lacking “juice”– especially early in the day

Here are some facts and symptoms that to me, seem to point away from ALS
1. The emg reveals that whatever is going on has been going on for a “long time”
2. The muscle twitching I experience is “all over” (arms, glutes, and legs mostly / chest and back some). It is not “localized”
3. I experience many sensory related symptoms such as frequent pins and needles in my shins and calves, occasional light burning in my right arch, knees, and quads, occasional very mild tingling on the left side of my face, and occasional tightness / mild burning in my left forearm.
4. The tight, mild ache I experience in my left arm has been going on for at least three years
5. I have two siblings with some similar symptoms

Here are some other facts and symptoms
1. I also contend with ongoing intermittent back pain
2. My low back is most uncomfortable in the morning after sitting and when my back is bad, I struggle to get my pants and socks on
3. I have skinny ankles like my brother. I also have an occasional hand tremor.
4. With my body weight on my left leg, I can barely lift my left heel up off the floor (this has been the case for years and I believe is connected to my injury in 2007). Despite being unable to do this, I can walk more than the length of a basketball court on my tip toes
5. I do not think I am losing any upper body muscularity and I am still capable of squatting well

Thank you readers for taking the time to read this. I would be abundantly grateful if anyone would care to share what they think of my background and symptoms based on their experiences. I am generally stressed, miserable, and confused over how to cope with what’s going on with me.
All the Best to All of You,
Jon

 

[Nikki J]

Do you have your EMG report? By going on for a long time do you mean you have chronic but not active denervation? ALS has both.

Are you going into Boston I hope? I will put in my usual plug for MGH. They will keep digging until they figure it out

 

[ricea]

Hi Nikki,

I have been going to MGH. Thank you so much for the reply. Here are a couple of quotes from my emg report:

1. The emg revealed normal sensory and motor nerve conduction studies in the upper and lower limbs but chronic neurogenic changes in the proximal and distal muscles in the left upper and lower limbs, with spontaneous discharges seen only in the gastrocnemius

2. Though preserved or exaggerated reflexes in an atrophic limb raise the specter of a combined upper and lower motor neuropathy (ALS), the neurophysiologic characteristics suggest either an old or chronic but very slowly progressive disorder, which is not consistent with that diagnosis.

3. The findings are in keeping with a chronic disorder of the anterior horn cells/motor neurons, or a motor predominant neuropathy such as distal hereditary motor neuropathy. The paucity of abnormal spontaneous activity in the face of significant motor remodeling suggests a long standing process. Injury to the cervical and lumbosacral nerve roots cannot be excluded.

4. There is electrophysiological evidence for chronic neurogenic injury involving all myotomes of the left arm (C5-8) and the L4-S1 myotomes of the left leg. Abnormal spontaneous activity was seen in the gastroc muscles only suggesting a subacute or ongoing injury.

Can you please tell me how you would interpret this based on your experience and knowledge? Thank you so much!

 

[Nikki J]

Hi again. It looks like they are saying something going on but it does not look like ALS. If you had an EMG with Dr C or Dr D who I think do all the neuromuscular EMGs they are the best

What clinic/ doctor is following you? Was the neurosurgeon at MGH? You really are dealing with superb clinicians so trust them to figure this out

 

[ricea]

Hi Nikki,

I had the emg done at mgh but Dr F was the doctor. I am being seen by Dr Reda at MGH who serves patients as part of the general comprehensive neurology team.

I have been asked to play the "waiting game" until August to see how this progresses. I am really struggling with this process and am always looking for strategies to cope. Not knowing what's going on or where this is heading is so hard. I am so distracted and pre-occupied with this. I know there are many who visit this forum who are fighting there own battles. My thoughts and prayers go out to everyone. Thank you very much for your responses Nikki.

 

[Nikki J]

Waiting is hard and it happens a fair amount in neurological situations.

Sorry I was told only 2 doctors do the EMGs but now realize that they could not possibly do all EMGs for MGH. They must have meant they do all the ones for the ALS clinic. But you don't get to be an attending at MGH without being really good.

Some of these murky neuro situations can go on for a long time so try, hard as it is, to forget about it and live your life between appointments. Take heart that your doctor did not refer you to the ALS clinic for an opinion. If it had been strongly on their mind they would have.

 

[ricea]

Thank you very much for the thoughtful, helpful replies Nikki. Taking time out of your day to address my concerns is incredibly kind and selfless. Thank you so much and I wish you well.

Jon

 

[lgelb]

With chronic neurogenic injury or a hereditary neuropathy on the table, I would consider neuromuscular PT and/or massage, but not chiro.

 

[ricea]

Thank you for the suggestion! I've been thinking about trying some massage therapy. I saw the chiropractor because he was the one who first worked with me when I suffered my lumbar injury years ago. He's a pro who I really trust and opinion I valued.

Thanks again... Jon

 

[ricea]

As the title of my thread suggests, I continue to be "confused and stressed".... I'd like to share a symptom that I experience and perhaps get some insight from those who are more knowledgeable than I.... As I mentioned in my introduction, I frequently experience a lack of "juice" / energy / weakness in my right leg. Yesterday morning after coaching a basketball game and throughout the early part of the day, it was really bothering me. I can still get around ok, it just doesn't feel as though my quad is doing its job. Today it hasn't been bothering me much at all. I just returned from a 6 mile walk (mostly) / jog (some) and my quad felt ok. From what I understand, this is not how als works, correct? The other symptom that was bothersome yesterday was the light burning / pins and needles on the right arch of my foot. Can anyone offer some insight? The mental aspect of what's going on with me is just as challenging as the physical aspect. It's the last thing I think about before I go to sleep and the first thing I think about in the morning........every day. Thank you in advance to anyone who reads this and takes the time to offer a reply.

 

[lgelb]

We can only advise to continue followup at MGH or where they refer you, and to undertake therapy and bodywork to alleviate your symptoms. It is really not helpful to our many paralyzed members to talk about your 6 mile walk/jog and then ask if this is how ALS presents. A clinician at a major center and an EMG told you otherwise. Believe it and move on to the next phase: mitigating your symptoms. You don't need a diagnostic label to improve your quality of life dramatically.

Best,
Laurie

 

[Atsugi]

Jon, just a thought.

Many people trust their chiropractors. But that's not medicine. Don't ask an electrician to build a rocketship, and don't listen to an "alternative medicine" person when inquiring into terminal diseases of the brain.

Sure, a chiropractor is as smart as any other bystander about medicine, but many people tend to give chiros a lot more credit than they've earned, so it can be dangerous.

 

[ricea]

Laurie and Mike,

Thank you very much for your replies. The last thing I would ever want to do is come across as disrespectful or insensitive. Laurie - your comment "you don't need a diagnostic label to improve your quality of life dramatically" was constructive and helpful.

Although the emg I had done was "abnormal", according to my doctor it's "suggestive" of a longstanding, chronic issue that is not consistent with ALS but he cannot say this assuredly.

Interestingly, my father learned yesterday that the emg he just had was "abnormal". Although he is 83, his doctor found it curious enough to want to speak to me about my symptoms over the phone. Additionally, she wants to speak to my doctor at MGH to perhaps discuss a familial link. My sister and brother also are contending with neuropathic challenges. Although I am the youngest sibling, my symptoms are more as you can see in my original post.

I was also on statins for 4 years and I wonder if they could have contributed to the list of symptoms I have.

Thanks again... Thoughts and prayers to all.

Jon

 

[Nikki J]

I hope the family information helps you get a diagnosis. It sounds highly unlikely to be ALS I hope once you do get a diagnosis you will return and tell us. It is very helpful to others to see that worrisome symptoms and abnormal EMGs often have other answers.

Good luck

 

[ricea]

I hope so too Nikki! I will definitely keep the forum updated as to how things progress with me. Another new word I've come to be familiar with is "idiopathic"... Seems as though I could be "idiopathic" at least for a while longer.