Don’t know what to think.

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shellbell622

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Hello. I have read the pinned post and many threads here before posting. I am 39 female and have 4 littles. My health issues started 4 weeks after I had my 4th baby last year.

One night I started to feel weird and that was the beginning of 7 months of dizziness, balance problems, headaches, ringing in my ears, and fatigue. Docs said I was just sleep deprived due to a new baby. Once my baby had been sleeping though the night the symptoms were still persistent. MRI of brain found nonspecific white matter hyperintensities but docs said that could still be normal or MS.

Fast forward a few more months to mid November. Started feeling weak like I needed to eat, shaky in my arms and legs but not actually physically shaking. I was not really concerned with my symptoms at this point as I figured I had some sort of deficiency. All labs came back fine.

Here is where my symptoms turned concerning and the reason for my post. A week later I woke up with my leg muscles feeling tight and almost like Charlie horses. They were spasms and cramps. A few days later it moved into my arms. Now a month later I am still left with weird muscle issues. I never know which day is going to be in which muscle. They will be stiff and will feel like I just did a workout or climbed a bunch of stairs.

My chiro confirmed that I have muscle fasciculations. They are all over in random places. The muscle soreness has moved into my back muscles as well. X-ray of my neck by chiro shows a straight cervical spine instead of a curve. My chiro thinks these issues are being caused by my spinal cord being pulled tight from my no curve. My MD doesn’t think so.

My MD orders full MRI of my spine and brain. Did them all this week and the results came back with some mild disc degeneration but my doc said normal wear and tear and referred me to a neurologist. My appointment is not until mid February.

Now after all that my questions are around warning signs. Are there any? I know I’ve read that there is no pain due to motor vs. sensory but from what I can tell of your responses to peoples threads is that is once signal is lost. All of the symptoms I mention above starting a year ago are still with me everyday. I don’t know what I am going to wake up with that day. Some days none of the vertigo and headaches and ear ringing but still all the muscle issues, some days I can only do the very basics to take care of my littles until my wonderful husband gets home to relieve me.

Most recently this week it’s tight sore muscles for no reason. The soreness isn’t super painful, just like I said, I have worked out but did not. Non painful Twitches concern me. I really have not wanted to post here as I respect you and all of your time but I just don't know what to think with my doc’s not agreeing and I fight daily trying to ignore what’s happening because I have a lot to do with the kiddos. My doc was initially heavy on the MS but my scans have not shown anything definitive.

There is no environmental reason for me to have all these muscle issues that I have never had in my life and I have read as much as I can read about ALS. All the websites contradict each other so my hope is someone can answer whether or not there are warning signs before muscles stop working. Thank you all in advance for your time.
 
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lgelb

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No, there is no feeling that signals impending weakness, and widespread twitching, stiffness and soreness argue against ALS. What you've described could be anything from holdover from a virus to a metabolic imbalance. Or needing a different exercise regimen besides running after your littles! So I expect the appointment will be reassuring as regards ALS. Meanwhile, I would consider legit PT (not chiro) to get more information (the process can help rule out some things and unmask others), and possibly relief.

Best,
Laurie
 

shellbell622

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Thank you Laurie for your reply. I was trying to let this all go from my head but recently reading about member JohnT and the only difference between me and him is I do not have any clinically noted gait or foot drop. But he also had spasms and pain. Confused as pinned post says there is no pain associated with ALS. My twitching has kind of lessened but it is still there and as I sit here now my left leg is twitching up and down in random spots. Every once in a while they’ll be some in my arms. My legs like I said before feel like they are overstretched, as if I’ve worked out or done squats, mainly in my calf and the muscles in above the back of my knee. I do not understand what muscle spasticity is. So is it only presumed ALS when you have failure in combination with all of the muscle twitches and spasms? Can early onset ALS be felt without failure? I feel like I’m constantly waiting for a failure to happen. Can you have weeks of muscle twitches and tightness before a failure?
 

lgelb

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The "only difference" you note is a very big one, Shell! As you will have read, twitching just doesn't mean anything in itself. It's usually like your foot falling asleep in terms of importance. Pain is common and has many causes. I mean, you can cause pain to yourself very easily in a single second. You cannot cause yourself as simply to be unable to lift a grocery bag or speak normally for the rest of your life.

The hallmark of ALS is failures + an EMG that shows those muscles' nerves have a problem, and others besides. The people who end up with ALS here seldom post in CIBALS because they have no long waiting period for failure. There is failure, or there is not.
 

shellbell622

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Thank you again, Laurie, for your response.

When I have a bad day of twitches and muscle tightness/soreness, I always find myself back here reading previous posts on CIBALS. I am mostly trying to find posts with questions and answers that help to rule similar symptoms out, not rule them in. I understand what you are saying but the twitches will not let the MND thoughts leave my brain.

My question today is, are there ever experiences from those diagnosed who beforehand would have good days and bad days? For example, I had a week of arm soreness/tightness and small arm twitches and then that has since gone away except for a random twitch here and there. When that happens it moves elsewhere, usually to my legs. Sometimes it’s one, mostly it’s both. Today my arms have lessened symptoms but my legs feel overworked when I am doing normal daily functions. Pain as if a Charlie horse is coming on but never fully does.
Then maybe the next day I’ll wake up and my legs will be less severe. And when it is in my legs, it’s usually only the back of my calves and the back of my legs above my knee, is that considered focal? The weakness I feel is not necessarily related to strength if that makes any sense. Feels weak like I haven’t eaten and should be shaky but I am not either of those things.

I looked back at my labs that I mentioned above where my doctor said they were all normal. It looks like he only ran CBC, metabolic panel, thyroid, and Ferritin. He did not check all the vitamins and minerals such as B, D, mag. My ferritin was a 14, which is two points above the normal range of 12-252. He told me this was normal because I was a woman.

I scheduled a video visit with him tomorrow to ask him to order blood tests for all of those things. You would think if a patient presented muscle cramping/soreness or twitching, that would be one of the first things you would check.

He is young and new to the practice as my Dr. retired so I’m not really sure about him. He seems to have a lot of experience with MS and thought that’s what I had until scans came back negative. I think that because he doesn’t have an answer for me he has passed me off to neurology and told me that unless my symptoms get “acutely worse” he doesn’t need to see me.

Again, I respectfully thank you for your precious time and patience and for all you do to help your community and the many CIBALS’ers.
 

lgelb

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Bear in mind the blood tests for things like Mg are not the whole story. You can always try supplementing small amounts, e.g. a Mg cream drop on a hot spot.

No, ALS does not wax and wane as you have described.
 

shellbell622

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So does anything I describe seem like symptoms that fit the onset of ALS?

A lot of CIBALS seem to measure themselves on running or working out but as a mom of 4 littles I can only say that my vacuuming and carrying babies strength is the same. The only difference is my muscles are sore from feeling stretched out while doing it and I seem to have to sit down after doing some household things because I get that shaky weakness feeling. Most recently the arches of my feet hurt off and on and I get a random buzzing in one calf.

My heart rate is hanging out around 90-105, all the time. OxSat is within normal range. Not sure if any of that factors in for ALS.

Are all of these symptoms irrelevant because after almost 7 weeks of this I should have had a failure by now?? I guess that IS the biggest question CIBALS have. Every morning when I wake up I can’t help the thought of, is today the day failure happens? As time goes on, it is getting harder to live and function in the now with my family while my head is constantly thinking about this.
 

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You need to block this site so that you stop doing this to yourself.
You have asked 3 times now and have been answered clearly.
Returning to read stories of others that also don't have ALS, then starting up questions again is really bad for your health as is deciding doctors are not doing enough or being thorough.
Please be sure to discuss all these concerns with your doctor. It might really help to print this page of your posts and answers out and take them with you.
I truly hope you can get some answers soon and will let go of these behaviours of returning to torture yourself here.
I'm sure you will have seen everyone asking these same things are constantly referred to this post I'm linking for you. Please read it carefully, consider printing it to take to the doctor with you as well.
 

lgelb

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Stop reading CIBALS. They're often as confused as you, so how could they guide you?

You don't need to anticipate failure of any kind. That's not how ALS works. As Tillie says, time to go and live your good life, so I am closing this thread. If you cannot get past your fears, please seek counseling so your and your littles' health are not affected by them.

Best,
Laurie
 
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