Ongoing symptoms

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Ironman23

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Mar 19, 2019
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Reason
Learn about ALS
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00/0000
Country
CA
State
ON
City
Toronto
It's been sometime but I am back because of worsening symptoms and no answers.

It's been about a year since my symptoms started.

Fasciculations that started in my leg have now spread throughout my body. They happen all the time, some days are worse than others.

When I stretch I can feel certain muscles spasm. When holding a fork my hand cramps. My hands always cramp. When I chew my jaw feels fatigued. My legs hurt all the time and the pain gets worse when I stand. Sitting has become difficult. My middle back is constantly stiff and uncomfortable around my shoulder blades. My right shoulder is stiff and painful.

Medications give me no relief.

I have been taking high doses of antibiotics since May. My doctor thinks it's Lyme disease but I have not improved only worsening.

I have seen a neurologist 8 months ago and I had no clinical findings.

Now my doctor wants to put me on a picc line.

Finding an answer is frustrating but I am hopeful.
 
Here’s the previous thread Possible als

Lyme gets over diagnosed a lot. Make sure you are seeing a board certified infectious disease specialist before getting prolonged antibiotics. There are many so called “Lyme specialists” who are quacks.

The neurologist cleared you of ALS previously. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. Pain points away from ALS. I don’t see ALS here, but if you’re still concerned, you can return to the neurologist.
 
Second that. High-dose or prolonged courses of antibiotics, especially if there never was or no longer is active infection or one your abx address, can make all your problems worse, and cause irreversible damage. A PICC line for Lyme infuses a specific antibiotic that is expensive, carries risks, and is unlikely to make you better if you are only worsening on your existing abx.

I suspect you are in the hands of a quack or just in the wrong place. I would consider d/c'ing your meds under the supervision of a qualified internist and seeking out alternative modalities for your pain such as supervised exercise, therapeutic massage and/or PT with an appropriate specialty. You can find MTs and PTs with a neuromuscular specialty, who focus on pain and stiffness as you describe.
 
If anything changes in the future I will post an update. Thank you
 
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