Relatively stable condition now worsening with fasciculations appearing

[Ann P]

Hello all. I’m a female, now age 70. I hope its okay to post an update after two years. My previous thread is here (brief summary below):

A first time poster who does not have fasciculations but now clinical weakness

Hello community, Thank you for your kindness in reaching out to help. Believe me, it’s very much appreciated. In contrast to an episode of fasciculations about 20 years ago that eventually disappeared (with a normal EMG + NCS), this time I have NO fasciculations - that I can see or feel...

www.alsforums.com

The perceived need for groin + hip muscles to ‘help’ lift the right leg began in February 2021. Individual ‘helping’ muscles sore or slightly painful. Resulting back strain or posture change appeared to irritate right shoulder blade. Tingling in both right leg and right arm. Testing in April 2021 showed:

CLINICAL EXAM. Mild curling of right toes. Decreased bulk of right EDB

MOTOR NCS STUDY (that focused on peroneal nerves + tibial): “remarkable for mildly reduced compound muscle action potential amplitude on the right when compared to the left yet unremarkable and symmetrical when measured from the proximal TA muscles. “

NORMAL EMG.

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PT exams: June 2021 (weaker right hip and leg muscles; muscle fatigue to failure on right); February 2022, different therapist (normal strength but right quads 20% weaker than left); February 2023, same therapist (grade 4/5 weakness in hip muscles + hamstrings in both left + right leg with right quad strength still 20% of left; positive bilateral Hoffman’s sign).

As I wrote in the first post, I planned to take forum advice and put concerns behind me, and pretty much did. Intervening health issues (9 months of nausea, a second cancer concern that will probably lead to thyroidectomy) were distracting. At times too ill, I had to stop the winter 2022 PT sessions. Planning to travel to Europe in May 2023 and feeling better I again started to ramp up exercises in November 2022. This was a total fail.

Any 'overuse' appeared to worsen the continuing right leg issue. The left side becomes sore after exercise; the right side muscles become tense and stiff with a long recovery period. Right hand becomes clumsy. I now cannot walk in sling-back slippers. The plantar fascia on right foot does not hold slippers in place. Fasciculations on bottom of right foot appeared.

Saw podiatrist who said I have stiff muscles on right side + reduced ROM in right ankle; he suggested exercises to strengthen the muscles in plantar fascia attributing the problem not to foot structure but to the lower back. Saw PCP who agreed that my balance is now noticeably impaired. Coordination seems off to me.

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Saw the same neuro last week who conducted the April 2021 testing. Frankly I’m not that comfortable with him. He is board certified in neurophysiology but not for neuromuscular. He had no interest in the PT observations (fine), quickly assessed balance much less thoroughly than my PCP then ignored it in his written assessment, told me he did not see fasciculations then ignored them in written assessment. Reflexes apparently fine, as was strength. No worsening to curled toes/reduced bulk EDB, which I would expect since that’s an old mechanical injury.

A possible complication is that my orthopedist disagreed w/ the radiologist's interpretation in April 2021 of the lumbar spine MRI. The orthopedist believes a nerve on the right side could be causing radiculopathy and neuro symptoms in left leg. He wanted that brought to the neuro's attention who when I did just became angry.

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Advice on best next steps would be welcomed. Like I mentioned we leave for Europe in May 2023. My initial inclination was to wait and see how this plays out over time. Just now, however, I see fasciculations in my right wrist. (My acupuncturist observes them in my foot. They DO exist even tho the neuro seems to imply otherwise.). Faint, and sporadic.

ONE - Do I continue to wait, perhaps only getting a repeat lumbar spine MRI to address possible impingement? (But that doesn’t explain the right arm.)

TWO - Schedule an EMG/NCS with this neuro within the next couple of weeks. Initially I was okay with accepting his clinical exam as definitive, which he thought the ‘right’ choice but now I see he recommends an EMG/NCS if I get a repeat lumbar spine MRI.

THREE - Schedule an exam with a neuromuscular specialist so an appointment will be place for when we return from Europe. The neuros available to me are at Georgetown, although I suppose Johns Hopkins is an option. Thoughts there? If I had my druthers I don't want to see the original neuro again.

I’ve TRIED to ignore this for 2 years and move on but my body does not seem to be cooperating. Thank you!!! It is with some embarrassment that I pop up again.

Best wishes to all.

 

[Nikki J]

If the current neuro is ordering an mri and emg I think I would do those. My reasoning is they will probably happen quickly. if the neuro is board certified in electrophysiology they should certainly be competent to do an emg. re neuromuscular certification not all ALS specialists have it. I think it is partly age dependent. Older ones didn’t have it as an option and might not feel the need to add it. Very young ones might not have had a chance to test yet. My neurologist ( who is world renowned) is board certified in neurology

if you want to pursue another opinion though you can also do that. It isn’t an either or situation. My sister was diagnosed ( correctly) at GW but she did not like the doctor. JHU was her second opinion. It is one of the clinics people travel for. I don’t know how difficult it is to be seen without a diagnosis or abnormal emg

 

[Ann P]

Thank you, Nikki.

I'll go ahead and get this scheduled with the original neuro. It will only be 2 weeks, after a 4 month wait to see him. Not talking to anyone about the issue, I can't tell you how helpful it is just to receive input. Encouragement to put my big girl panties on and get it done makes sense. THANK YOU.

He didn't initially recommend the EMG/NCS feeling confident about his clinical exam. Instead he offered to put the order on my record in case I changed my mind. It was only in his written notes that he formally recommended it IF I get the repeat MRI since the latter would not be conclusive.

He is part of a large practice that includes very well regarded neurologists. Unfortunately I can't switch to another doctor within the practice without his permission/release. My former wonderful neuro (I have 'wonky' nerves per my PCP) left a number of years ago; he was the recommended replacement who I never saw since my 'wonky' nerves weren't a neuro disease. Some meds were switched to my PCP.

There are many explanations for all this; nothing that I 'get' is simple but convoluted! Still I'm embarrassed by the sheer number of medical interventions in the last couple of years and appreciate there are many many people who need the services of doctors at places like Georgetown and John's Hopkins.

Thank you again,
Ann P

 

[Ann P]

Hello community,

Thanks to Nikki's encouragement I saw the neurologist and had the NCS and EMG. (In the intervening period, the left leg became more symptomatic than the right.) The EMG was once again (compared to April 2021) completely normal. The Sensory NCS was not, with sensory axonal polyneuropathy diagnosed. The Motor NCS was normal this time, with only minor findings earlier.

As mentioned after two years of this I finally managed to come up with fasciculations in February. (Seventeen years ago I had a bout of them.) The tingling can cross the line to 'cramping' muscles (although not cramps). Perhaps unidentified motor neuropathy remains?

The neurologist has put my PCP in charge of searching for a cause. I accept his assessment that I have full clinical strength. Its kind of amazing how a heavy bout of tingling 'weakens' muscles - temporarily. I can see how confused people get. The loss of joint position + numbness that happens when walking any distance leaves me convinced I can't control the left ankle and that I will stumble but I never do. Full strength really is there. My guess is I no longer have the coordination to hold slingback shoes on vibrating feet, at least without hard work.

For what its worth this all started about a week after my second Covid vaccination. It also began right after I tore my knee meniscuses. (Some of the difference in gait and perceived difficulty in walking may well be due to newly bad knees in a 70 yo.)

Take much care all, and many thanks for being there.

 

[Nikki J]

Thank you for checking back. While some of the causes for sensory polyneuropathy are within the scope of an internist if they do not come up with anything I would go to a different neurologist as there are some other causes. It is also possible for it to be idiopathic with no identifiable cause. I am sure Hopkins has specialists in this.

good luck

 

[Ann P]

Hope it's okay to send another post which, by definition, suggests it be read, taking time. I located a Facebook neuropathy group that appears to have good 'best practice' suggestions but I'm not sure I've totally graduated to it. Some I identify with but I don't want to self-define based on Facebook.

My PCP fired my neurologist - with my blessing. The man does not talk much less explain or educate. She was appalled he referred me to her for the blood tests. Some of the suggested tests have been done (all normal), others not since she's not comfortable with the process. The PCP is concerned about the fasciculations. She thinks a more comprehensive workup is called for. After a brief examination, she preliminarily excluded Parkinson's but then brought up ALS. I felt like putting a hand over her mouth, even protested but she's having none of it! She wants to start over with a new neurologist.

An appointment with a local neuromuscular specialist affiliated with Georgetown is not until mid-September. My PCP would absolutely start the referral process to Johns Hopkins and that might be faster but local IS easier. Perhaps waiting to see how the neuropathy/muscle functions change over the summer will be helpful even though that leaves blood tests undone with no path to a second-stage follow-up.

Not asking here for comments since I appreciate it's not the role of the forum to hand-hold or parse diagnoses, straying beyond what is clearly ALS. If okay I'll update in September on any diagnostic clarity that comes my way.

Blessings to all.

 

[Nikki J]

I am not surprised that your pcp was upset with the neuro. As I had said some of the tests you need are really not in the scope of an internist

you of course need to do you. In your place though I would ask to go to a neuropathy specialist. Just because your former neuro is useless doesn’t mean his electrodisgnostic skills are also bad. There is treatment for some of the cause of sensory neuropathy and the sooner the better if you have one of them.

 

[Ann P]

Once again Nikki you made the day better. I called the Neuro Center and spoke to the Office Manager who repeated that neuro changes are only possible after the former and potential incoming new neuro consult with each other and agree. Not going to happen. The Center is overwhelmed and appointments are scheduled out into the fall. This *is* a top-rated place.

You are right about getting at least the basic blood tests done. To have given up to wait for my scheduled appointment next September with the new Georgetown U-based neuro was irresponsible. Once again thanks for the push! What I can do is to scan the completed tests onto their portal and ask him to complete his initial list. And then probably suggest the paraneoplastic ones be added. Putting it in writing will help. After that, my Google University knowledge of neuropathies fails meaning I wait to September.

Thank you also for saying there's no reason to think him unskilled at electro-diagnostics, He didn't strike me as inept; there's every reason to believe him mechanically competent. My PCP faced with having this 'dumped' on her *did* outright negate the previous EMG results. She was, however, upset - I *think* - at hearing about the fasciculations for the first time. More, she's given to strong even sweeping statements - which I like. Sometimes I agree, sometimes not. But at least she listens then communicates.

As do you and others on this board.