1. < Brain & Nervous System

Vibration, twitch and pain

Posted by tkeyler @tkeyler, Sep 28, 2022

Hi all, recently diagnosed with APS, but having some neuro issues as well and curious if anyone can relate. Began with a clot in kidney in April and have had elevated cardiolipin antibodies for months. However, over the summer I began having fatigue and sore calf/inner thigh muscle, then some mild pain all over. I then developed muscle twitches occasionally as well as tingling. Floaters spontaneously came on in eyes overnight it seemed and now have mild cataracts. As of late, I have also developed an internal vibration or tremor. It is always there but most disturbing at night when awakening. I am currently awaiting some neuromuscular genetic tests after seeing both rheumatology and neuro at the mayo.

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tkeyler | @tkeyler | Sep 28, 2022

I should add dizziness and walking is more of a chore and tiring.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 30, 2022

Hello @tkeyler, welcome to Connect. I'm sorry to hear you've been diagnosed with APS. What steps are being taken to help control and prevent complications of the disorder?

Timing really stinks to have neurological complications also. It's great that you are in with Mayo Clinic. When I began experiencing symptoms like you describe, I had extensive bloodwork panels run. Deficiencies such as B12 can be a contributing factor to neurological dysfunction. Diagnostic testing like a nerve conduction study, EMG and MRI's may be run, and as you mentioned genetic testing. A neurologist may opt for a skin punch biopsy as well.

When is your appointment scheduled? Was this your first time meeting with Mayo neurology and rheumatology?

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1 reply
tkeyler | @tkeyler | Oct 1, 2022
In reply to @rwinney "Hello @tkeyler, welcome to Connect. I'm sorry to hear you've been diagnosed with APS. What steps..." + (show)
@rwinney

Hello @tkeyler, welcome to Connect. I'm sorry to hear you've been diagnosed with APS. What steps are being taken to help control and prevent complications of the disorder?

Timing really stinks to have neurological complications also. It's great that you are in with Mayo Clinic. When I began experiencing symptoms like you describe, I had extensive bloodwork panels run. Deficiencies such as B12 can be a contributing factor to neurological dysfunction. Diagnostic testing like a nerve conduction study, EMG and MRI's may be run, and as you mentioned genetic testing. A neurologist may opt for a skin punch biopsy as well.

When is your appointment scheduled? Was this your first time meeting with Mayo neurology and rheumatology?

Jump to this post

Hi Rachel,

Started plaquenil and need to figure out the anticoag portion - still on eliquis, but warfarin recommended. I too have had very extensive blood work done, but nothing abnormal found other than the IgG and IgM cardiolipin antibodies. I also had EMG done (not pleasant) at Mayo and it was normal. Had brain MRI (normal) but multiple people now have recommended skin biopsy - will bring that up at next appt. I meet with cardio on Halloween, ophthalmology in middle of Nov, then again with neuro to discuss the genetic test results shortly after that. Yep, first meetings with rheum and neuro. Been digging into the primary lit, and see there are neuro complications with APS - will paste with this post.

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2 replies
tkeyler | @tkeyler | Oct 1, 2022
In reply to @tkeyler "Hi Rachel, Started plaquenil and need to figure out the anticoag portion - still on eliquis,..." + (show)
@tkeyler

Hi Rachel,

Started plaquenil and need to figure out the anticoag portion - still on eliquis, but warfarin recommended. I too have had very extensive blood work done, but nothing abnormal found other than the IgG and IgM cardiolipin antibodies. I also had EMG done (not pleasant) at Mayo and it was normal. Had brain MRI (normal) but multiple people now have recommended skin biopsy - will bring that up at next appt. I meet with cardio on Halloween, ophthalmology in middle of Nov, then again with neuro to discuss the genetic test results shortly after that. Yep, first meetings with rheum and neuro. Been digging into the primary lit, and see there are neuro complications with APS - will paste with this post.

Jump to this post

@rwinney

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Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 1, 2022
In reply to @tkeyler "Hi Rachel, Started plaquenil and need to figure out the anticoag portion - still on eliquis,..." + (show)
@tkeyler

Hi Rachel,

Started plaquenil and need to figure out the anticoag portion - still on eliquis, but warfarin recommended. I too have had very extensive blood work done, but nothing abnormal found other than the IgG and IgM cardiolipin antibodies. I also had EMG done (not pleasant) at Mayo and it was normal. Had brain MRI (normal) but multiple people now have recommended skin biopsy - will bring that up at next appt. I meet with cardio on Halloween, ophthalmology in middle of Nov, then again with neuro to discuss the genetic test results shortly after that. Yep, first meetings with rheum and neuro. Been digging into the primary lit, and see there are neuro complications with APS - will paste with this post.

Jump to this post

I see that neuropathy is a complication. It's good you are seeing a Mayo Clinic neurologist soon enough. I know waiting is horrible, more time to overly research and drive yourself crazy. At least that's what I used to do anyway. 😉

In the mean time, how are you staying active? What type of exercise do you like to do? Sore muscles, tingling and twitching may make it difficult, but stretching can help. Do you stretch at all?

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1 reply
pamelaz | @pamelaz | Oct 2, 2022

Please let me know what is causing this!!!!

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tkeyler | @tkeyler | Oct 3, 2022
In reply to @rwinney "I see that neuropathy is a complication. It's good you are seeing a Mayo Clinic neurologist..." + (show)
@rwinney

I see that neuropathy is a complication. It's good you are seeing a Mayo Clinic neurologist soon enough. I know waiting is horrible, more time to overly research and drive yourself crazy. At least that's what I used to do anyway. 😉

In the mean time, how are you staying active? What type of exercise do you like to do? Sore muscles, tingling and twitching may make it difficult, but stretching can help. Do you stretch at all?

Jump to this post

Yea- I've really tried to stop looking things up myself because it just adds to the anxiety - putting my faith in the doctors I suppose.

I try to do something physically active at least every other day. I have started doing pilates 2x a week to improve strength and flexibility. I am also trying to mountain bike 2x a week as well. This one is a little more sketchy since i'm on the blood thinners, but I wear a medical band saying i'm on eliquis.

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tkeyler | @tkeyler | Oct 10, 2022

Update- Genetic tests came back and it is Wilson's disease- explains these other symptoms

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 11, 2022
In reply to @tkeyler "Update- Genetic tests came back and it is Wilson's disease- explains these other symptoms" + (show)
@tkeyler

Update- Genetic tests came back and it is Wilson's disease- explains these other symptoms

Jump to this post

@tkeyler Ah hah, Wilson's disease. They have figured it out! Great news, to identify what your're dealing with and focus on properly treating it.

Here's more on Wilson's Disease from the Mayo Clinic that may be helpful:

- https://www.mayoclinic.org/diseases-conditions/wilsons-disease/diagnosis-treatment/drc-20353256

I had high copper at one point and Wilson's disease was kicked around. How do you feel about the diagnosis? Have you begun taking the appropriate medication?

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1 reply
tkeyler | @tkeyler | Oct 13, 2022
In reply to @rwinney "@tkeyler Ah hah, Wilson's disease. They have figured it out! Great news, to identify what your're..." + (show)
@rwinney

@tkeyler Ah hah, Wilson's disease. They have figured it out! Great news, to identify what your're dealing with and focus on properly treating it.

Here's more on Wilson's Disease from the Mayo Clinic that may be helpful:

- https://www.mayoclinic.org/diseases-conditions/wilsons-disease/diagnosis-treatment/drc-20353256

I had high copper at one point and Wilson's disease was kicked around. How do you feel about the diagnosis? Have you begun taking the appropriate medication?

Jump to this post

Honestly, grateful it was anything with treatment. Fairly bizarre, but will hopefully be able to turn this around a bit. Got the genetic report on Sat and still waiting to hear from my doc.... messaging them now. Would obviously like to start treatment ASAP

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