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xoinnamorata

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Learn about ALS
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WV
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Wheeling
Thank you for your time and consideration, in advance.

When my twitches started nearly 7 months ago, they had me panicking. In addition to the twitching, my only other symptoms were buzzing sensations through my feet and legs, however, at times, they went up through my trunk and even neck. I also had perceived weakness/muscle fatigue/"heavy legs", though it was eventually found by the neurologist that I had mono. So, with that discovery, I had my first HUGE sigh of relief. The only other findings at my visit were fairly brisk reflexes in my knees and clonus in my feet/ankles (however that works).

Ironically, my neurologist mentioned ALS at my first visit even before my twitching started. I knew next to nothing about it at the time, so I went home and researched. The first twitch I noticed was in my right, upper eyelid. It literally twitched constantly for nearly three weeks! Gradually, it subsided, and I began noticing the twitches in the arches of my feet and before long, they had spread everywhere. One day, my index finger waggled intermittently for nearly three hours. As far as I could tell, most of them were the "thumpers", strong ones that I felt. It didn't even occur to me to "look" for others. I FELT enough of them. I assumed that was it. One day, I was sitting on the couch with my legs propped up, and I noticed that my foot was twitching. But, I didn't feel it! So, this threw me into a bit of a panic. After noticing that, I noticed that, in addition to the thumps that I get in my right shoulder, there are almost always twitches there that I can easily see but do NOT feel. I have many of the same in my calf muscles.

I was pretty nervous for my up and coming EMG. I "knew" I was going to fail it. I ended up with a pretty thorough EMG of both arms and legs and was considered completely clean. They were even 'ooh'ing and 'aah'ing over my "young, healthy" nerves on the nerve conduction study. I praised God following the EMG. Finally, I can let this go!

Then, about, a week later, I was sitting at the park with my kids, perfectly calm. I went to swallow, just like I would any other time, and it just didn't happen. I don't know a good way of explaining it other than it was just like my brain forgot how to swallow. Like when you swallow a few times in succession ... eventually, you have to FORCE it. This happened then and then again on occasion. I became pretty fixated on it, since, as I read the symptoms of ALS, at the time, I rejoiced the absence of swallowing problems. Now, here I was. I took some anti-anxiety medicines hoping that it would take it away, that this was just something that my anxiety was making up after reading about it on the internet. I wasn't choking or having any problems eating ... I just felt like I was having a more difficult time getting it to actually GO. About a week later, I was eating oatmeal, and I choked. New panic. I convinced myself that I couldn't swallow anything with little bits of food, because I would choke again, so I started eating only things that I could compact into larger, solid pieces, and I've had luck with that. But, since then, I have been struggling harder and harder to get it to start. I have noticed that things like cake and other things that are dry or thick and crumble just get kind of stuck in my throat, and I need to take a drink or something to wash them down. Since it started, I should note, that I have also had persistent phlegm and a sore throat (for 6 months, now!). The phlegm is in higher concentration after I drink fluid, but seems to be lower after food, and the sore throat is sometimes constant, but sometimes seems to ease up for a bit after eating or drinking.

I consulted the neurologist about this. She "assured" me that if my swallowing issue was of neurological nature, I would be also choking on thin liquids. So far, I have not had THAT problem, but food has been a consistent problem. Even swallowing without food or liquid feels tight or strained. I have also noticed a clicking sound in my upper throat, which is sometimes present and sometimes not. I have never had that before this started, either. I was sent back to my GI doctor, as I have a good bit of issues with acid reflux, and all he did was changed me from Prilosec to Nexium.

I began to assimilate to this new problem of mine, as several months had now passed and nothing new was happening. And then, as soon as I calm down a bit from THIS problem, I wake up one morning, and as I am out and walking around, I notice that my legs feel unbearably heavy, though in a different, yet intangible sense than they did before. Just walking down a flight of steps causes my legs to almost completely lock up. I didn't feel it "coming on". Only a few days before, I had walked nearly three miles with a friend. And walked around the rest of that day in my high heels. No problem. So, for the first few days or so, I decided that I had probably pulled a muscle or something in my back. Or maybe this was just some kind of exercise intolerance that I have read about with BFS and other things, since my twitches have seemed to amp back up again. But, unlike most of what I read, this isn't after hours of exertion or a 2-mile run. I get out of bed and walk down the steps and my muscles lock. I haven't tripped, yet. No drop foot, and negative Babinski reflex, but it feels as if lifting or moving from my hips is beyond a chore. I rested yesterday, hoping for some improvement, but my legs today feel almost worse than ever.

So, after having been fully relieved and released this ALS fear, I feel as if it is back on me, and even stronger than ever. I have called my neurologist several times in a panic, fearing the worst, and she has told me, several times that she is "100% sure" that I do NOT have ALS, and last time, she even stated that she would stake her life on the "fact" that I do not have it.

To close for now, I will add some test results, and a bit of my background and family background. I am a 27-year old female. Prior to March of this year, I have never noticed any of these strange symptoms, aside from the hyper reflexes, which I have always had as far as I can remember, and which my Dad, sister, and Mom also had, which is why I never gave them much thought. As far as blood work is concerned, my B-12 is borderline/low, low vitamin D, low ferritin. I tested positive for RA factor, but my sed rate was normal, so she isn't pursuing it at the moment. Oglioclonal bands were found in my spinal fluid, but no lesions or anything of the sort were found on my MRI, aside from hemangiomas in my thoracic spine. I just had a myelogram for those last week and am waiting for results to see if perhaps the leg sensations are from spinal cord compression or something of the like (I am praying that they ARE!)which came back okay. Negative for Lupus, negative for Lyme disease. My barium swallow at the onset of my throat symptoms was normal. I just had one about 3 weeks ago. Also normal, but my throat is feeling terrible and continues to feel more so. There is a family history of Hereditary Spastic Paraplegia, which would explain my leg symptoms to a degree. However, the course of that disease is supposed to be VERY gradual and is limited to the legs, and therefore, does not explain my swallowing problem or twitches. I am being referred to a neuromuscular specialist in Columbus, Ohio, who has done research with this hereditary thing, but I can't get into her for a couple of months. In the meantime, I am racking my brain, and panicking nearly constantly. Any insight is greatly appreciated.
 
Hi,

You wrote a thorough summary of what you've experienced, and, by its organization it does not appear that you're writing in panic mode.

There are others on the forum who are much more qualified to help alievate you fears, and perhaps give you reasons to look for as to why you're having these problems. I know that even borderline B–12 levels can cause issues, but not familiar enough to comment.

What I am familiar with is the 'mother bear instinct', where we greatly fear anything that could take us away from our kids when they are small. It is normal to feel this way.

I also am very well acquainted with swallowing issues. From personal experience I can completely echo your neurologist's advice, in that if you were having problems neurological in origin, it would be with thin liquids too. I'm not saying you'd necessarily be choking as in aspirating on thin watery drinks, but, they would still be the most difficult of everything to down. Its just how it is.

I don't know about the clicking you're experiencing. However, if you're worried, and the concern is interfering with your normal everyday life and responsibilities, ask for an evaluation by a speech language pathologist. There are tests that will very clearly demonstrate if there are problems, and where the problems are occurring.

There are conditions— not ALS— that can cause a problem initiating the swallow (what you seem to describe). If you have a modified barium swallow, oftentimes just called a swallow study, this type of issue will show up.

Take control, don't let fears rob you and your family during such an important time in your lives. You can't get time back.

The days you have right now with small children, and a whole life ahead of you, should be the best time of your life. Hang onto it. Don't let the monster of unfounded fears take it from you.

Good luck to you. I hope there is a cause found that is easily treated, or it just fades away on its own accord.
 
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I guess I forgot to mention that my second barium swallow was a modified barium swallow. They didn't note any issues. I see an ENT on Tuesday. The throat symptom is by far the most troubling to me as I feel it is a constant reminder of whatever this is. Every swallow feels strange and strained, tight and not natural. It's a bit difficult to explain. It's almost as if my throat feels constricted and I have to exert extra effort to push anything down (food, water, saliva ... anything). Yet the tests show nothing. Which I realize is to my benefit. This is just a scary and bewildering feeling, and combining it with other symptoms sends my mind into a frenzy. I see an ENT on Tuesday to see if he can shed any light on this. Thank you, Rose, for your quick and thoughtful response. And, no, Sadie, I had not read that sticky. I have read many others. Not sure how I missed that one. I read the undiagnosed thread with optimism but then noticed that the poster later added a diagnosis date of only a few months ago. Do you know anything about that? I read a bit further and see possible PLS, but I'm still a bit confused about it. Anyway, thanks again!
 
My dad had bulbar palsy. For the first 2 years they were treating him for, Meth Gravix something. The brain like tell's you to say I want a drink of water, but the mouth don't say it. They said that the path from the brain to the mouth was like missing a link. Like lining up domino's and one missing. Good luck!
 
I agree with your present neuro . . . your story is not the story of someone with ALS. The swallowing problems you indicate are not the swallowing problems of someone with ALS. Your weakness that you describe is not how weakness would present itself with ALS; it doesn't occur as rapidly as you are describing . . . it is an insidious event, as are all of the other symptoms of ALS.

You are obviously a person who sufferes from anxiety issues . . . and don't tell me that you don't . . . you do. That is the reason you won't believe a trained neurologist who tells you that you don't have ALS. Stop trying to diagnose yourself with a disease there is absolutely no evidence you have. In fact, stop trying to diagnose yourself, period. You don't have the knowledge to do it, so leave it up to the professionals. That's not a slam . . . it's a fact. I don't have the knowledge to build a rocket ship, so I don't go on the internet "researching it" thinking that I can. I leave that to the professionals and I'm fine with it. Be fine with leaving the diagnosing to the smart docs at OSU.

I wish you the best.
 
Low B-12 can make you feel like general crap. No energy, tired, weakness when walking, etc.

I think I'd steer away from the neuro and see a Rheumy. A positive RA factor points to something auto-immune. Clean EMG means no ALS.
 
My thought is that you've gone well beyond health anxiety. All your tests come back normal, but you insist that you are getting worse. Sounds like you need to check into some psychological help in coping with what, if anything, really is going on with you.
 
I appreciate all of your responses. I am certainly not in denial that I had severe anxiety and severe health anxiety. I feel confident with the reading of my EMG but have cause for concern with my neuro, which is why I'm currently looking for a second opinion. She has said things such as "Your reflexes are VERY hyper. If you had ALS, they would be absent." And, "If you had ALS, you would probably be dead by now." (She has only been seeing me for about 6 months.) She has diagnosed me with Hereditary Spastic Paraparesis based on my family's history, including my mother's, based on my hyper reflexes in my legs and the clonus along with the absence of any other positive test results. She HAS been very thorough. I think it is bold to have a solid diagnosis without many symptoms, the progression of the disease, and the presence of other diseases that do NOT fit.

I don't lose sleep over HSP at night. My Mom, Grandpa, and cousins have all been good examples to me with it, and while it causes progressive disability, I know that it will not take my life. I was not able to get into OSU, but have an appointment with a neuromuscular specialist at a research hospital in Southern West Virginia next month. I have an appointment with an ENT tomorrow to see if he can shed any light on my throat issues. I will update with results, and, once again, I thank you for your time.
 
I completely botched the last sentence of the first paragraph. That should say: Without many symptoms of the conditions, namely the spasticity, the way in which the disease is supposedly progressing in me, and the other SYMPTOMS that I have that do not fit HSP. She had never even heard of the condition before me. Yes, she has done a lot of reading up on it, but the diagnosis seems a bit bold to me. We shall see.
 
You have answered your own question then. You probably have HSP and your poor doctor has been trying to get you to see it. Its the differential diagnosis for PLS which is a MND affecting only UMN causing Hyper reflexia and other things such as clonus.
Why the heck dont you think that the leg weakness and heaviness with Hyperreflexia and clonus is NOT HSP. Why did you miss that important piece of information when you posted?
The swallowing issues need not be connected in any way to your neurological symptoms.
 
If your twitching and weakness started in your legs, where is the ALS progression in your legs? And why are you so concerned about bulbar problems when you aren't showing signs of rapid progression in the initial sites? Progression from your legs to the bulbar region in 7 months? We'd expect to see some serious disabilities at this point. Yet you don't have them, which is the best evidence that you don't have ALS.
 
I question HSP because of the suddenness of my symptoms, the lack of my neuro's experience with it, and the symptoms that I have that do not fit HSP. My mom and grandpa took a couple decades before they ended up in a wheelchair. Don't get me wrong, I still feel far from that, but, while I have very brisk reflexes and clonus, my doctor says I do NOT have spasticity. I suppose it's more of a watch and wait thing. I don't have the money for the test, at the moment. As I said, I am seeing a neuromuscular specialist at a research hospital next month, so I will see what he has to say about it.

Do you know if it is common for people with HSP to fail
EMGs? I know that it is supposed to be UMN dominant, but my mom's have been dirty for awhile.

My throat is my most troubling symptom. I see an ENT in a couplehours, so I will see what he has to say and follow-up with an update. It is an initial appointment, so I am not sure what all will be done.
 
You do realize that HSP can affect more than the legs, correct? Stop worrying about ALS--and let them treat the HSP with the proper meds and see if you get any relief.

My grandmother and aunt both had it. My mother died too young for me to know if she did.

Baclofen works wonders!
 
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