LRP4+ - I have symptoms - what do you think?

[Tweetsoc]

Started going to eye care doc for follow up she suggested MG - went to neuro opto requested single fiber emg neg

Went to my regular doc told him what eye doc said and asked he order bunch a test. One of the test LRP4 came back positive.

Eye doc said doesn't mean much as of now but reading the internet and neuromuscular book it says LRP4 is related to ALS.

My symptoms are: muscle twitching, vibrating feeling in the calf, muscle twitching shoulder, arm and near the lips. Along with this I have weakness in both thigh when walking. Also, stiff fingers.

Doc said MG does not cause muscle twitching. I also get jaw pain from eating. No change in voice

Given a positive gene has anyone tested positive for this gene that has LRP4..

Please be honest do my symptoms sound like ALS?

The twitching came out of no where along and muscle weakness of both thigh. Also get sharp pain and burning sensation if I walk to too much.

Muscle twitching is visible that comes and goes mostly on left leg and sometimes I can feel a jerk in my toe or foot.

Thanks
Rh

To add twitching and vibrating in left leg is none stop. Other part of body comes and goes. Feel like a heart beat thumping.

Also fatigue is insane

 

[affected]

The great news is that twitching and cramps and vibrations and any other word for them mean nothing at all.

Weakness in the thighs when walking doesn't sound anything like ALS either.

Have a good read here, then let your doctors work on this, don't fall into the trap of thinking you are going to google and magically become smarter than the doctors and work this out.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

I hope they get answers for you soon, all the very best.

 

[Tweetsoc]

Thanks but isn't twitching in body a sign of something? Most post here are talking about this. I also have stiffness, weakness and fatigue. I have an appt to see neuromuscular doc 8 months from now.

What about the LRP4 has anyone here tested for this?

 

[Bestfriends14]

Twitching means nothing, really and truly nothing, without out right function failure when it comes to ALS. If you drink too much coffee, don't sleep well, and generally live an unhealthy lifestyle, your body will twitch in response. Thankfully, none of what you list has the least to do with any ALS onset I know (and I've seen a lot). As Tillie said, please read the posted stickie, as it is evident that you have not, given your questions about twitching.

Keep working with your docs. Best of luck to you.

 

[affected]

Please do read the post I linked you to as it saves our terminally ill, and those caring for them from having to say the same things over and over.

I don't know any big link with LRP4, again read the post I linked you to, it is jam packed with information.

 

[lgelb]

LRP4 has been associated with some myasthenia gravis that tests negative to other antibodies. You should follow up with a neurologist knowledgeable in MG.

 

[Tweetsoc]

Hello, my last post discussed having LRP4+, which is commonly found in ALS and MG. Since my last post here, I've been waking up every day with new symptoms. Recently, I've noticed numbness and muscle loss in my butt cheeks and bone. I can't sit for long without my legs going numb. If I sit for too long, I can feel my bone and tailbone.

All of this happened in less than a week. In addition, I have biceps and thigh problems. The most bizarre symptom of this disease is autonomic issues. For example, I can't walk for more than 5 minutes without feeling lightheaded. All of the heart tests came back normal.
I have issues with my facial muscle they twitch. I have twitching and a pulsing feeling in my muscle randomly.

My 2018 muscle biopsy from an elevated CK level demonstrates this.:

"Genetic testing shows a variant of uncertain significance in AGRN and COL6A3. Left thigh biopsy performed 03/18 at OHSU revealed "increase lipid and mild mitochondrial ultrastructural abnormalities...mild denervation atrophy"

I haven't had any problems since 2018, but this year of 2022, after my covid vaccine about 6 months ago, I've been going downhill with all of these symptoms.

Was ALS caused by the covid vaccine kicking my immune system into overdrive because I was predisposed to neuromuscular disease?

Thanks
B

 

[Nikki J]

Please stay on one thread ( I merged for you) so people can read your whole discussion easily

 

[affected]

Did you read the link I gave you above?
No ALS is NOT ever caused by the Covid vaccine, not even once.

Please discuss this with your doctor so you can receive answers in context of your own situation.

 

[lgelb]

Again, you should follow up w/ a neuro who can rule out/confirm any connection to MG. Just bc it might not cause your twitching doesn't mean twitching means you don't have it. There's a total clinical picture that docs will look at, including any appropriate testing.

There's no reason to think of ALS here.

 

[KimT]

Yes, there can be twitching with MG. Fasciculations can happen with many conditions and some can happen with no condition. They will be considered in your workup. Please know that your doctor(s) will get to the bottom of it.
I'm sorry you're going through all of this and hope you get some answers soon.

 

[Tweetsoc]

Thank you very much for your response. What concerns me the most is that I occasionally lose my ability to hold, grip, and drop objects. I've noticed that sometimes my arm or limb merely goes numb, then I regain use, and then my grip on an object feels spastic. I'm not sure, but it's not usual.

Another source of concern for me is the twitching of my fingers and muscles, but most importantly, the feeling of weakening in my biceps and thigh. It makes walking a bit of a challenge.

Of course, I also have autonomic dysfunction, which causes me to feel light-headed when walking...

It could be MG or ALS based on the LRP4 and symptoms....

It's definitely a neuromuscular disorder.

I can't seem to get my muscles to move quickly enough.

Has anyone on this forum ever done any LRP4 testing?