Losing function on my left side - seems to match the pattern

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SkyFox720

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Hello everyone.

My first post here. Took care to read the stickies at the top and appreciate so much those of you willing and able to take the time to help answer questions from people coming here with concerns.

I am coming here worried as a result of progressively worsening symptoms on my left side that seem to match with some cases of ALS I've read about. I'm getting lots of reassurance from others that I probably don't have it, but living in my own body I can feel what this feels like, and I can't shake the worry.

I'm 37 years old. I'm diagnosed with Hypophosphatasia, another rare disease that affects bone mineralization. I'd had a concussion last december and made a full recovery, then had another concussion and neck deflection in May after I tripped and fell to the left and hit my head against a wall. Also in May I was exposed to lead in paint I was using for a project, my mask didn't work properly and I ended up breathing the stuff in, not realizing it contained lead, for about a week. Was blowing paint out of my nose and everything.

My issues first began really slowly...back in December, not long after getting my Covid booster shot, I noticed I was occasionally dropping things and had a bit of trouble with coordination and judging distance. This is what led to the concussion when an overhead door was coming down and I didn't notice.

My fall at work in May was from not realizing my left foot placement and tripping as a result.

But despite that, I still felt somewhat "normal" until the beginning of July. It was then that I noticed that my left foot was beginning to hit the ground a bit when I walked. Especially if I was walking around the yard. Eventually, I had to start picking up my left foot a bit higher, and developed a bit of a slap gait on that side. It was also at this time that I noticed my left calf muscle was skinnier than my right and felt more like jello compared to the other. Like, a noticable (to me) difference in tone, firmness, and thickness of the muscles there.

I am right handed, but it seemed to me like my right leg shouldn't be more defined than my left to that degree.

I began to grow concerned. Scheduled a Dr appointment. The day before the appointment, I noticed my left thumb began to act strangely. It began fasiculating and pulling inwards on each fasic, and this would happen each time I used it. I also noticed an ache and stiffness developing in the thumb muscles. Additionally, after a shower, the symptoms would get a lot worse. More twitching. More aches. More tightness.

Saw the doctor and he suspected the lead exposure primarily and ran tests. Levels came back below 2. So he wasn't concerned. Tested my grip strength and found the left side 4/5 vs 5/5 on right. He suspected something like GB could be developing but wasn't sure. And put in a referral for an EMG for me.

By this point I was getting very nervous, looking up my symptoms online and everything kept coming up ALS. I sank into fear. Anxiety spiked. Could barely sleep. Twitches kept going throughout the night in my left hand and would wake me up with fear each time.

So far though it was only localized to the left thumb muscles and left leg. But over the course of the next ten days, it began to progress. My left index finger began to twitch, with aching sensations. Then I began to lose fluid movement of the rest of my fingers and pinky, to the point that I began having trouble even holding my phone or typing. My fingers just could not hit the right keys. My whole hand slowly began to feel useless and "dead".

Pain and twitches then began in my wrist, then forearm muscles, and have now progressed to my tricep. All on the left side.

At this point I scheduled another appointment with an NP, who evaluated me and this time I did my absolute best to put all the strength I could into the strength tests. She found my strength to be mostly equal bilaterally except that with my being right handed she felt it normal that I'd be stronger and more toned on that side. She had me do a few carpal tunnel tests and didn't find that I had carpal tunnel. She didn't check my balance though, and I had noticed that I was having a lot of trouble with balance on my left side. For example I'd turn around in the shower and suddenly stumble to the left, having to catch myself.

The heat we are experiencing would make everything worse. In the mornings I'd wake up feeling almost normal, but as the day went on everything would get worse.

I began to look up supplements that slow the progression of ALS. And picked up many. Began taking them and started to notice an improvement. I also scheduled another doctor appointment for a second opinion. This doctor also did an eval on me, found my reflexes normal, slight left side weakness but not something he would call clinical weakness. He ordered an X ray of my spine to see if there was anything to be discovered there. What was found was mild spondylosis in T11 and mild arthritis in the C-spine but nothing else significant.

He agreed to let the EMG referral stand, but felt I should stick with the supplements and come back in three weeks for a follow up. My supplements include B complex, CoQ10, NAC, ALA, Magnesium Oxide, Calcium, a probiotic, green tea, Curcumin, vitamin C and others. All that I'd seen in research studies.

Having seen three practicioners I tried to reassure myself that it wasn't ALS and to see what the supplements did. This all came on really fast after all....a week or two of leg issues followed by ten days of hand decline....seemed too fast to fit the ALS bill. I went for a walk, about half a mile, to try to just build up strength in my legs. But halfway through I got such a burning sensation in my calf muscle and persistent twitches, and it took two hours for the burning and twitching to stop. This scared the crap out of me all over again. But, I decided to try to do what mt doctor told me and give it time.

The supplements began to help a lot over the coming days in terms of stopping fasics, and by yesterday I almost felt "normal" again.

Then this morning, my roommate made cake for everyone and I had a couple slices.....and....it was like everything came back. My left hand tightened up again, my thumb began twitching, fasics lit up in my tricep and arm, and I felt my foot drop return once more. The ache returned to my hand as well, and I noticed every muscle seemed like it was sore from overuse even though I haven't been overusing it.

So. I googled this. And found that eating a lot of sugar is really, really bad for ALS. My heart sank. Were the supplements just "masking" my symptoms for a while, so that I wasn't getting better but only felt better?

Did eating that sugar and having all these symptoms return unexpectedly correspond with what happens to ALS patients if they seem to have a few better days and then eat the "wrong thing"?

I keep reading contradictory things about my condition. Some places say there's no ache or pain associated with ALS. Others say that the muscle aches from weakness are a noticable first sign.

I'm at a loss. For every reassuring thing in read there's another that seems to match my symptoms to ALS.

Loss of dexterity in left hand especially thumb. As I type this my thumb is tight and painful and it's making it difficult.

Slap gait on left side and burning in calf when I walk a medium distance. Also really sore in the Achilles tendon area.

Fasiculations mostly located on left side and localized to the muscles that are hurting. Slowly working it's way up my arm. Fasics in leg remain mostly near my ankle at this time.

Some slight soreness on the right side from compensation I feel. As I'm using my right side more to counteract the deficits on the left.

I also notice that sometimes my speech seems slightly sluggish or it takes me slightly longer to finish my words. But it is also hot outside and that could be affecting this. I am drinking lots of water with electrolytes to help during this heat wave.

And also I notice that when I stand I sometimes feel very dizzy, like I'm going to faint. However, my blood pressure is actually high. So this doesn't make sense to me.

None of my doctors felt that I had what they would define as atrophy. But I definitely notice that my left hand looks more "hollow" and bony than the left. The muscles feel soft and jello like while the muscles in my right hand feel somewhat firm and smooth. It's possible that I have atrophy, but it hasn't progressed far enough to be completely obvious.

My EMG is expected in 6 months, but I'm pretty worried. I had had it in the back of my mind that the supplements might just be masking a problem, but as they began to work better and better I began to wonder if maybe I was out of the woods. Clearly I'm not. So I'm asking you, did your ALS start like this? Did it progress this fast from noticing the very first symptoms of it to having noticeable trouble within just 3 weeks time?

Did your muscles feel almost like a tickle and an intolerance for movement, ache persistently throughout the day?, Did they twitch every time you tried to move them? Before atrophy set in? Did they feel spongy and almost deflated even as doctors told you you were fine?

I've always read that ALS only progressively gets worse and doesn't actually get better, but in my case it's like it comes in waves. Some days are definitely better than others, but over time I am noticing that the fasciculations and soreness are spreading. I'm very worried, and looking for reassurance. But also wanting to do so is respectfully as possible.

I'm fairly certain that my EMG is going to come out dirty, despite reassurances from my primary care physician that it won't. I just don't feel like they're looking hard enough, probably because I'm young.

I've looked into other things this could possibly be. Because this isn't affecting me bilaterally that rules out a lot. Because it's spreading that becomes more concerning. If it's some sort of neuropathy, I don't have numbness associated with it but I do occasionally get pins and needles. Only for brief moments. However I've read this also can happen with ALS. The fact that the supplements that work for ALS also work for me is also kind of concerning. The balance issues on my left side and the burning in my left calf with twitching are also very concerning. It all seems to fit. And nothing else seems to perfectly explain it.

The only thing that doesn't really seem to match is the blood work. None of the potential biomarkers same elevated, nor do I have any elevated counts in my cbc, but I do have a low anion gap and I have high glucose. My vitamin B6 is off the charts but that is because of my high profositasia which causes that. My B12 was slightly low but normal, but I'm still taking a supplement to increase it with the blessing of my doctor.

Can anyone relate to this, or reassure me in some way?

Ask me anything if you need more information. I really appreciate your help. This struck me just as I was about to go back to college as an adult and finally gave my degree. I really want to move past this and start my life, and I especially want to be there for my son. This anxiety is killing me, so any help means the world.

Thank you it's a wolf
 
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lgelb

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Um, happy to reassure you that whatever you think you've read about ALS is more fodder for your anxiety than fact. Eating cake is not going to reawaken ALS, sugar is only a problem for the usual reasons and lack of nutritional value, the supplements you're taking can't possibly prevent what you don't have, and are going to deplete your wallet before they could replenish your health, and the ALS blood markers you seem to think exist, don't.

Your ALS reading can't possibly have supported the widespread onset in 3 weeks that you describe. Is someone actually tracking your hyperphosphatemia in terms of downstream complications and (even subclinical) exposure to lead? Are your hypertension and "high glucose" being treated? Heat, HTN, glucose abnormalities, possible dehydration, and anxiety can generate a full spectrum of physical symptoms from the jump.

I see no reason to worry about ALS, and every reason to believe your EMG will be pristine. I would find a good internist who knows about more than supplements to follow this through and treat what's in front of you, which seems like plenty.

Best,
Laurie
 

SkyFox720

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Hi there and thank you so much for your reply. For my hypophosphatasia I have an endocrinologist that is working with me on it, unfortunately their appointment availability is few and far between. I can't be seen until October to start getting on any kind of a treatment plan. The hope is that we can get me on strensiq. Unfortunately I could find no info about whether hypophosphatasia can cause the symptoms that I am having, as it is such a rare disease that this particular area is still being researched.

I had read that glucose could increase the amount of glutamate in your brain, leading to more neuron death and hastening progression of the disease. But perhaps one instance of having too much cake wouldn't create a flood of symptoms? All I know is that my function today was much less than yesterday. With the sudden sugar intake being the only new factor. I try to avoid sugar most of the time.


For biomarkers, I read some information that certain blood markers could indicate things like inflammation in the body, acid levels, creatinine and other factors that could point in the direction of or away from ALS being a factor. But my blood markers don't match anything I read in that area. The big outliers are those related to my hypophosphatasia such as B6 and alkaline phosphatase. But also high glucose. I wondered if perhaps this could be some sort of neuropathy, but from what I was reading neuropathy should have more sensory symptoms than I seem to be having. So that's been worrying me.

Surprisingly they haven't done much follow up on the lead exposure, with the levels now below two, they don't seem concerned. I told them that I would like to get whatever remaining lead in my blood completely out but I was told that it would naturally pass with time.

I'm still waiting for some tests to come back for other possible exposure. For example I've been living in an area that has a lot of pesticide use, and our water is supplied by a well so there's possibly an environmental factor, but I'm not sure.

It seems that every time I find something reassuring, I find something to counteract that reassurance in some atypical presenting ALS case. This is leading to a loop of stress, making it much harder to reassure myself.

The biggest concern is how hard it is for me to deal with the fluctuating use of my left hand and especially my left thumb. It's something that you use so often so having it twitch, spasm, and lose dexterity is alarming. Especially when the doctor couldn't diagnose it as carpal tunnel. (And even then, I've read about carpal tunnel actually being misdiagnosed ALS).

I'm thinking I should ask for an MRI to double check for nerve compression as I don't think the Xray would show that as easily.

Forgive my anxiety, I apologize for that. I just want things to be okay, and any explanation other than ALS to actually "fit".
 

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You don't have the hallmark symptoms of ALS, but I can see that you are spending a lot of time searching online to solve the puzzle yourself.

What I've noticed over the 9 years I've been here is that when we get people say they don't match all the symptoms, or read of other people like them somewhere else, rather than describing ALS onset in some part of their body, is that they turn out not to have ALS. This is especially true of the ones who attempt to argue that they are different as they have an atypical presentation.

If you go back to our READ BEFORE post we list so many things people get diagnosed with when they are sure they have ALS.
So the jury is far from out, and now you can choose to either let your doctors do their job, or listen to your anxious hyperfocus and bury yourself in a myriad of rabbit holes.

I truly wish you all the best, please do come back in 6 months and let us know the EMG results, but truly I don't see how we can substitute for doctors that seem to be talking perfect sense to you on all fronts, including your fear of having inhaled some lead.
You need to work with doctors, there is no way we can help on a text forum.
 

Bestfriends14

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Those are some very, very long posts. As the others have said, nothing you have written points to ALS. Further, if supplements slowed progress or improved symptoms of ALS, the medical community would have said something and every patient would have improved by way of vitamins. So, I have no idea what you have read, but it seems rather fantastical and I would advise that where ever you have read this nonsense, to stop reading. Again, I have no idea what is going on, but it sure does not point to an MND

Please continue to work with your docs and report back in 6 months after your EMG. Good luck to you and take good care.
 

KimT

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Sugar can, in fact, cause increased fasciculations. Other things can as well. Caffeine, stress, lack of sleep, dehydration, etc.

Get your B Vitamins checked. Also Vitamin D. Most people living up North have Vitamin D deficiencies and Mayo clinic routinely tests B Vitamins.

Vitamin B12 and Folate can help with inflammatory markers, too.

I would follow through with your workups.

Let us know how your EMG turns out.

Just a suggestion. Stay away from ALS groups and Google. Work with your doctors.
 

lgelb

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Nothing is "really happening" as yet. PCPs are not experts in neurological disease.

The links you posted (I removed the supplement ones; they are out of scope for your thread) do not make the case that cake brought on any disease. They simply point out that in a somewhat metabolic disease, real food is important, as with pretty much any chronic health condition? Do you know how many people eat cake and do not have ALS?

Atrophy has many causes, current and past. Issues in a hot shower, which is very common, are hardly synonymous with MS.

Please don't post again until after your EMG. Closing your thread as it only seems to be feeding your anxiety.
 
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