Concern over recent symptoms

[roscojenkins]

Hello,

I come with some concern about recent onset of some seemingly unexplainable symptoms and was hoping for some guidance.

About me- 40 y/o male, no previous major health issues, slightly overweight and elevated blood pressure short of needing medication. My Grandmother on my father's side had ALS, but no genetic testing was done to my knowledge. My father passed in his mid 30's from an accident, but neither of his two brother's have had related symptoms or issues to date (early and late 60's).

Symptoms and onset - About a month ago I went to my GP for some weakness in the 4th and 5th fingers on my non dominant hand. Initial thought was medial epicondylitis and I was given a 6 day prednisone pack (24mg start and -4mg each day) and told to get get a compression sleeve for my elbow. On the 3rd day of the pack I started to have an adverse reaction which resulted in noticeable weakness moving from my non dominant hand to the other arm and my calves, as well as the onset of persistent fasciculations in both legs in my calves and lower quads. On doctors advice I finished the steroid taper and returned for a follow up. As there was no improvement they ran panels for metabolic profile, CPK, autoimmune issues, and thyroid levels. All of my blood work came back normal with the exception of slightly elevated albumin. We went back this week to run one more panel for lyme disease as I live in a tick heavy area and had been bit twice in the last year, we have not gotten those results back yet.

Present- As the last 10 days have passed, I have continued issues with my nondominant hand, but also now the same area on my dominant hand. I've also had issues with rapid muscle fatigue in my calves during normal routine movement at work and home, the last two days I've also had issues with lower back muscles feeling fatigued to the point of failure in the afternoon. Generally, muscle fatigue and heavy feelings pass after a nights rest. There is no lingering soreness as one would expect from a hard workout etc. All affected areas feel 'distant' for lack of a better word. There is no pain, discomfort, cramping, or tingling - lower legs and forearms just feel different and less useful. Twitching in legs is intermittent, and occasionally happens around the eyes and very seldomly in my forearms. Admittedly, I'm having a ton of anxiety and I understand that this could be a contributing factor. The last few days I'm also lacking an appetite. I'm hoping for some guidance in how to approach this with my GP as he currently doesn't seem to have interest in any referrals or further testing.

I appreciate any time spent reading and reviewing this post as well as any responses. If there is any additional information or clarification you would like please let me know.

 

[Nikki J]

I don’t know what is wrong but assuming the lyme is negative you deserve follow up. So if you get results and say now what? and your pcp doesn’t have a plan you can ask for a referral to someone. Neurology wouldn’t be unreasonable. If your pcp has no plan and refuses to send you to someone else I would find a few pcp.

 

[lgelb]

The diffuse onset/twitching, improvement with rest, "heavy feelings" and regions affected such as the lower back all argue against ALS.

No disrespect to your GP, but a steroid pack/elbow sleeve as empiric therapy under the circumstances you describe doesn't impress me. You should have been referred to an orthopod.

Elevated albumin can relate to dehydration, which is certainly not a recipe for happy muscles, either. Appetite and anxiety also relate, as you know.

In a tick area, Lyme is always a possibility, of course. If the testing is positive, I would advise a Board certified infectious disease specialist, not a "Lyme literate" clinician.

The latest research suggests that "just short of needing medication" BP, esp. with some extra weight, merits, actually, medication and this could have several beneficial effects from the jump. Not saying nothing else is wrong, but safeguarding your foundational health, which your heart and blood vessels are the poster children of, can have a big influence on your body's resilience when faced with whatever it's facing right now.

If worry is affecting your appetite and/or daily routine, I would see a counselor. Reducing/.stabilizing your BP can improve your mental wellbeing as well since hypervigilance is a common consequence of an amped up autonomic nervous system.

All in all, I'd find a good internist who can review your records/history/presentation and at least confirm that anything systemic that should be ruled out has been. If they think you should be referred, then you will be.

Best,
Laurie

 

[roscojenkins]

Thank you for the responses. My Lyme disease test also came back negative and I'm now waiting on response from my GP. I will be requesting a referral as well as following up about stabilizing my BP. I definitely think there is an element of hypervigilance contributing to my symptoms, but I cannot say how much. The entire experience has just been very shocking.

 

[roscojenkins]

I appreciate the responses and apologize for the quoting in my last post.

On advice here I went back to my GP and asked for a more defined plan of care. On my request I was referred into and started a clinical mental health program to help with anticipatory anxiety/stress as well as other external stress factors in my life. I was also referred for an EMG on my arm which is scheduled for June 9th. Depending on the results I will be referred to a Neurologist or an Ortho. I also saw a chiropractor and got an adjustment. He noted hypothenar weakness in my nondominant hand as well.

I'm still dealing with general weakness in my legs, but it feels more like over exertion than anything. Not sure why that would be the case, but I haven't been increasingly active over the last few months. The twitching is also persistent around my eyes and in my legs, though it seems to have localized mostly to my right leg/calf.

 

[roscojenkins]

I now have an appointment with a neurologist at the end of June as well. The twitching in my legs has greatly decreased in frequency, I still get the occasional twitches but nothing like I was experiencing a few weeks ago. Now it's mostly a single twitch here or there. I still have weakness in my legs that I struggle to properly describe. It generally just feels like fatigue or a brief feeling of being out of balance as opposed to loss of strength/function. It seems transient, as I can go hours of doing things without noticing it at all. I'm also still extremely anxious about the entire situation, I think mostly because of my grandmother's diagnosis, so the hyper fixation/vigilance is still prevalent for me so this may still be a contributing factor.

My personal belief and hope is that I'm dealing with a physical manifestation of my anxiety about ALS.