Unwell and concerned

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DaveHutch

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Hi all,

I have read the sticky posts and understand my presentation may be somewhat atypical for als, however, as the situation develops I am becoming increasingly concerned.

last month I became unwell with migraines, nausea, constipation and burning, tingling and prickling sensations in my limbs. I have had a brain MRI which was clear and I’m scheduled to see a neurologist next week.

in addition to the above, I experience widespread muscle twitches/fadciculations. My left hand is significantly atrophied in comparison to the right and I notice persistent fasciculations in the area between thumb and finger where the atrophy is apparent. At night and when extended, my left hand twitches and the fingers shake/jolt.

my bowel has also completely stopped working and processing food. Even with laxatives, I can’t pass wind or a stool and my anal sphincter muscles are completely weak and barren.

I’ve not noticed clinical weakness in terms of day to day activities with my left hand yet but the thumb does cramp and ache quite often. Upon research, my symptoms are starting to line up with ALS as well as MS.

any thoughts on the presentation and advice ahead of my neurology appointment would be greatly appreciated.
 

lgelb

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I don't see the alignment that you do, your research notwithstanding, though I'm sorry to hear of your troubles. A post-viral syndrome or bacterlal infection are certainly possibilities. And not all your issues necessarily relate to each other.

Should the neurologist fail to see reason for concern as regards a neurological disorder, as I suspect will be the case, likely your clinical team will focus on a more systemic explanation.

Best,
Laurie
 

DaveHutch

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Thanks for taking the time to respond Laurie. The hand atrophy is apparent and has even been noted by a friend. The twitching of fingers and fadciculations is a real worry but the left hand isn’t weak at present. Is this different to an ALS presentation? I’ve also read that sphincter dysfunction can be related to ALS. I may point more towards MS but there are crossovers
 

lgelb

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Atrophy, twitching and fascics have many causes. ALS is one of the least common. If you browse threads here, you'll see that varied combinations are quite often discussed while still most often relatively benign in the end.

Someone may correct me, but I cannot recall a ALS presentation with demonstrated sphinchter dysfunction. Later in the disease, sometimes, mostly due to weakness, but not at onset. You realize ALS typically shows up in one region, not several over a short period.

You seem to think MS and ALS are the only possibilities here. There are literally thousands more. The causative organism, if any, may already be gone.
 

DaveHutch

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Thanks for the responses and information. The fasciculations are really bad and are now particularly in my hands where there is visible atrophy and weakness. My Bowels are completely shut off, I read that this can be an early symptom of ALS but it seems that this isn’t the experience of those diagnosed in this forum? I know that sensory symptoms typically point away from ALS but they can also be present I believe. I am getting progressively worse at the moment and also having difficulties getting fluids down due to my throat feeling extremely tight and regurgitating water. I see my neurologist today so hope I can work towards some answers but I’m very unwell at present and concerned about ALS amongst other things

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The neurologist spent little time checking me and didn’t even examine my hands. He did some very basic strength tests and ordered a head and spine MRI. I felt like he really didn’t put any care into the appointment, he didn’t even do a proper neurological exam. I will await the MRI And then may need to request an EMG as my fasciculations and weakness are getting worse by the day at present, as well as bowel function
 
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Blackeyes

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i suggest you stop doing research and listen to your drs. It sounds like the more your reading the more your developing symptoms. And your symptoms are all over the place. That is NOT how ALS begins. But your mind can create many different symptoms and your body can manifest them almost instantly. You can’t take a wide range of symptoms and stick them in a box and hit search and expect to get an actual diagnoses. You prob got 100 different causes and you saw ALS and now your stuck on it. The only way your going to get better is if you stop with the searching. Relax. Drink lots of water and wait for your dr to run his tests. He’s not going to run tests that are not necessary just because you read something on the internet. MRI’s and EMG’s are expensive. They don’t run them on a whim and reading your symptoms and how they’ve developed ALS would be the furthest thing from your drs mind. There are ppl here that are dying from this disease and wives who are watching their husband slip away. It’s really painful to have someone come on here who is so lucky enough not to have this disease but seems to want it that they argue with drs and anyone who disagrees with them. Google is NOT your friend when your trying to self diagnose. Your grasping for a diagnoses so you could be causing some of these problems by worrying. The last month I started having headaches. Really bad headaches and then my face was hurting and my neck and shoulders. One day my forehead felt like it was on fire and my legs turned to jelly I could barely walk. My bowels worked to well and I was peeing every other min. I would put food in my mouth but couldn’t swallow it seemed to get stuck in my throat. My chest hurt and I could barely breath. Stress can manifest itself into many different symptoms. The more stress we are the worse it can get. If we don’t deal with it then it can actually cause serious real problems. I finally called my dr and he put me on some anxiety meds and something to help me sleep. And I guess I’ve been walking around with clenched teeth for awhile so I need to work on that. My point is we can cause our bodies to do and feel things because were stressed or scared or looking for answers in the wrong places. Don’t go looking for a terminal horrible disease and seeing things that aren’t there. Don’t convince yourself your symptoms are more then what they are. Relax and stop thinking about your symptoms. Stop talking about them to everybody you know and all over the net. Start with emptying your bowels. Laxatives are more for someone who hasn’t gone a few days. Sometimes if it’s been 5 days your going to need something with more of a kick. Your pharmacist can direct you there. I’m assuming you’ve gone somewhat otherwise you wouldn’t be researching anything you would have exploded cause the body can’t go without a bowel movement for weeks or months. Also a side note overusing laxatives can have the opposite effect. Your body gets used to having something to make it go and your bowel gets lazy.
I’m sure your dr will figure things out and in a few weeks you’ll look back and wonder why you got so excited and be a little embarrassed cause you told all your friends you had this terrible disease and you don’t. So save yourself all that and just live. Run and jump and laugh. Make love to someone you care about. Dance in the rain. Write a novel. Learn a new language. Do something other then researching diseases. Someday some dr might tell you that the life you thought you had is no longer a possibility and tho you promised to grow old with your spouse your going to break that promise. But until that day happens stop looking for doom and gloom in every corner. It’s very possible if you stop “researching” and start living again some of your issues may just go away and the ones that don’t it won’t be google who diagnoses them.
I apologize for the long and what prob sounds like a lecture but 2 years ago a dr changed my life forever and right now I’m watching the life leave my husband and am tired and cranky and I just don’t understand why ppl are determined to have a horrible fatal disease that they won’t even listen to what their drs are saying.
I wish you well. Sorry you don’t feel good.
 

DaveHutch

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Hi Blackeye. Thank you so much for such a thorough and passionate response. I’m sorry to have upset you and can only imagine the hardship you and your partner have faced of late. I in now way mean to chase a diagnosis or cause distress to those who have been diagnosed. As I’m sure you will appreciate, being unwell and not having answers is a very hard place to be too, especially when your symptoms are progressing and affecting your day to day functioning. I’m aware that some of my presentation wouldn’t be typical for ALS but I have developed widespread fasciculations, weakness and what looks to be some atrophy which is why I was looking for further information. The bowel symptoms in particular are concerning me and there seems to be mixed information online as to whether the bowels are affected by ALS or not. I have learnt more about this condition and have great respect for those fighting, caring and surviving with the disease. My fasciculations are increasing in areas such as hands and face where the atrophy, weakness and aching is more apparent. Again, I am sorry to have caused any upset, I hope you can understand that I am an unwell young man, due to be a father later this year and simply seeking some answers as to what is causing such issues with my health at present
 

lgelb

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There is not "mixed information online as to whether the bowels are affected by ALS or not." We explained this. They are affected late in the disease, if at all, not at onset, least of all as you've described. We have also explained that your opinion as to whether you are weak or have muscle atrophy is not a substitute for a clinical opinion, which you have now received.

We are rightfully skeptical about the notion that you could remain unable to pass stool for weeks on end, and still be walking around, etc. A body unable to eliminate solid waste is simply not functional. Whatever the status, I hope you have improvement soon with a proper diagnosis.

All in all, we have determined that you are not willing or able to take "no" relative to ALS for an answer. I am closing this thread to help you get on. Please do not start another unless you are diagnosed with an MND. I hope that you find yourself able to see things more objectively with the passage of time, results of additional tests, and perhaps counseling. All the best.
 
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