ALS Symptomatic

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Mdrown91

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Hi everyone, and sorry to all who are here. I have been having very suspicious symptoms for about 6 weeks now. They all started right after I gave birth to my first daughter on November 19th. I had some post labor complications which led me to be hospitalized twice during the first week of her being here. I had extremely high blood pressure the first time, and the second time I had extremely high blood pressure as well but also my legs had started twitching. When I went to the hospital they checked my reflexes and I was hyperreflexive.

Since that day, my muscles have been twitching nonstop, it is constant. It started out only in my legs, but now it happens in my arms and even face as well. If I sit and put my legs in a certain position they shake on their own (clonus?) My right leg feels weak and I can see a visible difference in my calf sizes of left versus right. Also, I am having to clear my throat/cough after eating almost every meal… I don’t know if this is “bulbar” symptoms in addition to limb symptoms now.

I truly believe based on my symptoms that this is ALS. I am waiting to get a work up from a neurologist because I applied for life insurance and critical illness insurance and don’t want any medical records to show this before I am approved. Although I did have a scheduled phone visit requesting a neurology referral before I had applied for the life insurance, but didn’t end up doing the phone visit and told the doctor I would reschedule (I realized I didn’t want anything to be recorded) yet the doctor still wrote in my notes what the visit was regarding so it is in my record! I’m so worried that life insurance will see that visit and I won’t get approved or there will be a discrepancy because they will see I had symptoms of this before already having the life insurance.

Anyways, I have already accepted that if I do have ALS I just have to deal with it, because there is nothing else I can do. I have tried confiding in my husband but he doesn’t understand the extent or severity of the situation… that he would have to take care of me 24/7 as this progresses (along with taking care of our daughter) and this makes me so sad. We have been such an active couple, and putting him through this will break my heart. He is such a wonderful man but I don’t know how he would deal with this.

Anyways, sorry for the ramble, and not sure I even have a question to go along with this. I just really needed to vent because I don’t have anyone to talk to about this really other than my sister and she lives 4 hours away. (I don’t even bring this up to my husband often, he tells me I need to get the work up and we will go from there.) I will make the appointment once the life insurance situation is figured out.
 
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Nikki J

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I see no question here. Update us after you see a neurologist
 

lgelb

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I don't see ALS in this picture at all. Even without the complications you mention, postpartum deficiencies in iron, B12 and sleep are common, and certainly contributors to twitching, which is benign in itself. So whether you see an internist or neuro next, I would expect reassurance on that score. ALS does not cause feelings of weakness, but rather actual weakness, and bulbar symptoms do not arise as rapidly as you describe. In this season, many people are experiencing GERD, allergies, dry mouth/throat, and/or eating too fast and taking in air.

Best,
Laurie
 

Bestfriends14

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None of your symptoms correlate with ALS. 6 weeks??? No, ALS doesn't work as quickly as that. What is it that you can no longer do? Not doing things that feel harder, but actual failure? Atrophy happens after your a muscle or muscle group dies, so atrophy would not happen in 6 weeks, especially without failure. Good luck with your doc appointment, but I suspect your symptoms correlate more with what Laurie said.

Good luck to you.
 

Mdrown91

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Thank you all for the responses. I will update once I see a neurologist. Happy New Year to you all.
 

Mdrown91

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Hello, and sorry to bother you again! Please disregard the above and if possible I would really appreciate if you could hear me out with these current symptoms… I have a doctor appointment scheduled with my primary for next week, I can’t get a neuro appointment before seeing my primary. But this is really consuming me, I would really appreciate some feedback.

The facial twitching and throat clearing has subsided… the twitching now is primarily on my left leg, sometimes right. The twitching is still constant, and now additionally I have what looks like muscle spasms, moving my entire calf/thigh muscles involuntarily. Is an entire muscle moving usual with ALS? I read about spasticity and spasms as a symptom. This is now happening all the time. I also have Hyperreflexia which was noted when I was in the hospital.

I’m very sorry to take up any of your time and very appreciative if I receive a response back. Thank you.
 

ShiftKicker

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Hello there-

I'm making sure you've read the Read Before Posting link, as it contains the answers to most of the questions that bring people here. One of the things you will read there is that symptoms do not come and go, nor improve.

It is important for you to visit with your doctor to get a physical exam, as this will dictate which direction your doctor will wish to search next. Speculation based on online research and an incomplete understanding of what is driving your symptoms can only increase anxiety. We do get many people here utterly convinced they have neurological issues, and it turns out to be something else. A proper doctor's assessment by someone who has your medical history in front of them will provide you what you need.

Please take care- hopefully your doctor will have more information for you and be able to give you some reassurance about ALS.
 

Mdrown91

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I appreciate you responding and did read the entire “read before posting”, and it says twitching without Hyperreflexia may be meaningless… but as I do have hyperreflexes I am just curious… does ALS cause entire muscles to move involuntarily? Sorry again to bother, that is my last question for this thread until I see a doctor.
 

affected

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It just doesn't happen that way.
You have a doctor appointment coming up now, read the link ShiftKicker has sent you, and go to your doctor with an open mind, not asking if you have ALS or you skew the whole examination.
Let us know how the visit goes, but being here is not at all good for you.
Spend all the time you have waiting doing things that are healthy for your body and mind - that won't go astray regardless of what a doctor finds.
 

lgelb

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In ALS, sometimes there are exaggerated reflexes when a nerve is dying. But when a nerve is dying, there are functional impairments -- things you cannot do -- as well.
 

Clearwater AL

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First, four very ALS knowledgeable members have told you - your
symptoms do not indicate ALS… pretty clear.

As far as holding up any doctors appointment to secure life insurance
and critical illness coverage… most terminal policies are not effective
immediately, most have a two year clause before eligibility to file a
claim.

Insurance companies have seen this “play” before. And, by the most
unlikely far possibility you were to be diagnosed with any terminal
disease within months after purchase… your claim would be denied.

Again, insurance companies have seen your idea hundreds of times
before. You'd be very very far from the first trying the same thing.

Millions of people have to hire a lawyer just to settle a car wreck,
work related claim or property claims.

It’s up to you… don’t that be a hold up to see a doctor very soon to
help you with your Health Anxiety.
 

Mdrown91

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Hi all, wanted to give an update: I had my
Neurology appointment last week and my clinical exam was normal. I just had my EMG/NCS this morning and that also came
back normal! I can now finally let this go. I am so grateful and this whole experience has given me a completely different outlook on life… to appreciate every moment. I let this completely consume my life and was one thousand percent sure I had ALS, and I wasted the past two months of my life worrying every single second away. So for reassurance for those who twitch like I do- which is CONSTANT- the chances are so much more likely that it is benign.
For all PALS/CALS, I have nothing but sincere respect to each and every one of you. You all are so amazing and this has shed so much light and awareness for me. Thank you to all those who responded to my posts, much appreciation, and I hope all of you take great care.
 

affected

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I'm so happy you have these results.
 

lgelb

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Thank you for circling back. I am sure it will help others.

Best,
Laurie
 

Mdrown91

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Thank you very much! 😊
 
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