Old 03-04-2019, 06:13 PM #1
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Default Would really appreciate some advice

Firstly, I'm keenly aware what some of you are going thorough, and I'm in awe that you all still give advice and aid to others. A truly good sign of humans overall. Thank you. And I wish nothing but goodness to you all.

I'm terrified I have ALS. My main symptoms are arm/leg weakness, some twitch, and hyper reflexes in my knees. I also get some twitch in my neck, and I've noticed my tongue is lopsided.

I've had a horrendous couple of months in terms of health, I've been ill for about 10 months since a bad bout of shingles (which started at C4 went into my right ear and down neck). Since then I've had severe issues with balance (veering to left, feeling like I'll fall), weakness overall, vertigo, 'dead' right arm sometimes, and I've been unable to live normally - like walk/drive/work.

Since then I've been diagnosed with Chiari malformation and a small brain anyeurism (which they've determined was incidental finding and is low risk rupture, so just annual scan monitor). Chiari unlikely to be causing symptoms, as I've no headaches.

Ive seen a neurologist and two neurosurgeons. Neurologist review in Nov. Reflexes were all clear, unremarkable. Same with neurosurgeon in Jan. I'm back with neurologist this week, and terrified because my symptoms are progressing.

I no longer believe, oh that won't happen to me. At 35yrs and after the past year of being ill, and diagnosis. I can't rule anything out. Unfortunately because all my scans (brain and spine) are clear, it doesn't leave a lot of other reasons. In a way I want to 'try' to be prepared of any other nasties that may arise. Crazy I know.

If I just list some of my symptoms, is there anyway any of you kind people could tell me if any of them sound like ALS (please):

- Heaviness weakness in right arm, from shoulder, down side of arm, to forearm. Weakness. Grip is ok still. It can be terribly bad, sore, weak, sometimes improve. Feel like you can't lift it. It's been happening 4/5 months but worse lately.I've tried the Hoffmans test, pretty sure its negative, but hard to do on yourself.
- Shaking in arms. Mostly right. A lot. Entire arm.
- Right foot/leg weakness, pain or cramp back calf, front shin and front of foot. Sometimes an ache in hip. No drop foot. Negative Babinski (I think). Happening about 2months.
- Hyper reflex on right knee, by neurosurgeon. Pretty sure that wasn't there in Nov.
- Some jaw twitch, like my jaw does a tiny seize. I've had neck seizes in past at back head, which I'm not worried about. These are new.
- I've noticed my tongue is lopsided to left, and my soft palate on right droops down more than left.
- Some twitchs in my right leg, especially above knee. It's like the leg flexes, altho I'm lying down in bed. Some other twitches which I'm trying to ignore, they don't seem v.frequent.
- I do vestibular physio exercises daily. One involves walking while throwing ball between hands. I've dropped ball on few occasions on my right hand. Also dropped one phone, right hand again, smashed screen.
- pretty sure I don't have any muscle wasting.
- have had neck issues a long time, neck seizing stiffness, soreness. Likely the Chiari.
- clear MRI spine all clear, so nothing like disc issues etc.

Is there anyway my symptoms could have increased so severely in 3 months that neurologist will now think ALS?

I'm terrified to get an EMG as in a weird way I don't want to know. I know I'll obsess even if its negative ALS, but has 'findings'. I know I'll obsess if I don't get it done to rule out anything. I do absolutely appreciate that this isn't a real dilemma in comparison to your realities.

I'm well aware I have severe anxiety too, which I know doesn't help at all.

It's just I hate the feeling like my right arm and leg are wasting away. Of feeling weak all down one side, while walking. Feeling almost like I'm having the slowest progressing stroke of all time (but loads scans MRA/CTA apart from anyeurism would've showed issue).

I've started walking more, as my balance has improved slightly past few weeks. More exercise than I've done in a long time. Which I do realise may be increasing arm/leg issues (but both which were there before starting exercise).

Any help at all really appreciated. And again, I'm well aware my situation isn't yours, and so I'm sorry for asking for advice/help.

I want to be as prepared as I can be for neurologist appointment this week. The last time I was there I was told about anyeurism, it was the worst day of my life (at least so far).

I'm also really worried she'll suggest EMG test, which as I've explained I almost don't want to know answer.

I hope against hope she'll say reflexes are all ok, and that symptoms aren't ALS and that I don't need any tests.
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Old 03-04-2019, 06:45 PM #2
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Default Re: Would really appreciate some advice

ALS on top of everything else you’ve experienced would be really, really unlikely. And you haven’t really described muscle function failure, which would be the hallmark of ALS.

You have a more complicated neurological history than most, so it is appropriate to have a neurologist sort all this out. And I would trust a neuro exam from a neurologist more than I would from a neurosurgeon. Neurosurgeons really aren’t trained to look for ALS. E.g. the neurologist can more appropriately tell you if changes you’ve noted with your tongue, palate, and reflexes are significant, or normal variants, or perhaps consistent with your other neurological history.

And testing for your own reflexes, Hoffman’s sign, etc., is notoriously inaccurate and not recommended. I’m a physician and I can’t accurately assess my own reflexes.

Since you’re improving with balance exercises, take that as a hopeful sign. Physical therapy may be your best bet.

If your neurologist ends up requesting an EMG, bear in mind EMGs can show many other findings besides those from ALS. And wouldn’t it be reassuring to learn that it’s normal?
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Old 03-04-2019, 06:53 PM #3
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Default Re: Would really appreciate some advice

Thanks for the reply. Yes I know I'm complicated!! Should have mentioned, I'm not particularly worried about the tongue/palate they seem to be there a while (6months+). When I stick tongue out its straight, just tiny bit lopsided inside when you look in. I've had no issues with voice or swallow etc.

I'm really scared at the thoughts of the EMG. The idea of facing it, knowing that ALS confirmation is a possibility.

My neurologist is very good, but really cold and gives zero reassurance. So I'm absolutely bricking it going in this week.
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Old 03-26-2019, 05:56 AM #4
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Default

Hi All,

I wanted to update on how my trip to neurologist went. And perhaps get a little more advice if that is ok. I'm in a bit of a rut, unsure what to do next. And panicking and worrying like crazy.

Neurologist was nice when I told her I was worried about ALS/MND. She did reassure me that I didn't, but then progressed to examine me (it had been 3 months since last visit).
Her results:
- gait normal
- able to do monopedal stance and hop
- able to do tandem stance
- examination of cranial nerves normal
- hearing normal
- no palatal asymmetry or tongue asymmetry
- Examination of extremities tone, coordination, sensation all normal.
- BUT reflexes were generally brisk.

She doesn't list it but I'm pretty sure she checked Babinski. Was fine (nothing happened).

She suggested possible carpal tunnel on right arm and "offered" CNS and EMG. Given the amount of testing I've gone through the past couple of months, and stress, following discovery of small Brain Anyeurism and Chiari malformation, I said I would think about it.

I'm aware I have crazy high anxiety. But I do keep going over the possibility of ALS. My reflexes were normal end Nov, so only 3 months later are now brisk.

I'm trying in earnest to get on with my life, try to not get any tests done. Try to face down my anxiety hypochondriac fears. But it is so hard.

Please can anyone tell me if I should be this worried about my increased brisk reflexes? She called them 'generally brisk'.

I know my options are simply - get on with life, hope nothing happens further symptom wise. Or get the tests. I'm just too scared to get the CNS and EMG tests. I know myself enough to know I'll stress out like crazy about them, obsess if there is anything abnormal, and if there is anything terrible found - I don't want to know / can't handle.

If neurologist was worried, wouldn't she have insisted on the tests?

Its 3 weeks now since my neurologist visit. I'm still worrying. Still trying to push through anxiety, not get tests.

I just don't know what to do.

Another Q please.

Can bad anxiety (which sometimes results in my hand/arm/leg shaking & spasaming) impact NCS and EMG tests? Could I throw the results off?

I'm so worried if I do get the test, the I'll be jerking and shaking like crazy from nerves.... before they even start. And then I'll make the test results be terrible.

I'm too scared to get the tests done. And I'm too worried to believe all is ok.

Last edited by ShiftKicker : 03-26-2019 at 09:54 AM
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Old 03-26-2019, 10:02 AM #5
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Default Re: Would really appreciate some advice

Which choice (getting the EMG or asking strangers on the internet for their opinion) would provide you with proper answers specific to your symptoms?

It looks like you don't want to take the tests, which provide definitive answers for the very thing you are worried about. I'm not really sure it's appropriate to expect strangers on the internet to replace that kind of medical attention. It appears to me you are suffering from extreme anxiety about this, but you are unwilling to take the correct steps to actually mitigate it and instead are asking folks with the disease you are terrified of to take time to reassure you. Regardless of what you decide, please get help for your health anxiety- it is affecting your ability to make decisions for yourself or think through situations clearly.
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Old 03-26-2019, 10:21 AM #6
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Default Re: Would really appreciate some advice

Hi, thanks for taking the time to respond. You are of course right. For what its worth, I'm sorry.
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Old 03-26-2019, 11:40 AM #7
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Default Re: Would really appreciate some advice

FiGii, You have been diagnosed with Chiari Malformation Syndrome. Hopefully
confirmed by MRI.

To help ease your anxiety... Chiari is not a brain aneurysm.

It's a bone growth at the base of of your skull that can be repaired.

Many of the symptoms you describe are that of Chiari Malformation Syndrome.

You have a circumstance to be concerned and anxious.

To lighten some of your anxiety let go of ALS.

Hope you get the Chiari resolved.
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Old 03-26-2019, 01:16 PM #8
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Default Re: Would really appreciate some advice

Al, for the record, Chiari malformations are a group of disorders that are defined by anatomic anomalies of the cerebellum, brainstem, and craniocervical junction, with downward displacement of the cerebellum, either alone or together with the lower medulla, into the spinal canal. Some of these are surgically correctable. A neurosurgical evaluation is appropriate for directing care.

But in any case, FiGii, you have been evaluated by a neurologist who felt ALS wasn’t at play here. Reflexes in and of themselves are irrelevant without other features of ALS. Refer back to Shiftkicker’s last post. This forum really can’t replace an evaluation from a neurologist. Once a neurologist clears you, you’re good to go.
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Old 03-26-2019, 01:16 PM #9
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Default Re: Would really appreciate some advice

Hi, thanks for the reply. Unfortunately I was diagnosed with both a Chiari Malformation 7mm, and a 2.5mm Brain Aneurism a few days before Christmas. I've had MRIs, MRAs, CTA's, Spine MRI's the full works. I've seen two neurosurgeons, and my neurologist a few times since. The aneurism will be monitored as low risk, and Chiari surgery isn't on the cards yet (review in 6 months) surgeon isn't convinced it would resolve all my issues (balance, vertigo, weakness right side), and I don't get the signature Chiari terrible headaches.

While not an excuse, it is because of my experience these past few months that has made me terrified of any more test/results such as NCS/EMG. I think I'm now programmed to expect the absolute worst case scenario. Like ALS/MND.

I'll try to just accept what neurologist said. Or do tests. She was happy overall with everything. My reflexes were bit brisk but symetrical. She didn't push me to do the NCS/EMG test, only if I wanted too, if I was still concerned with my arm. In reality my arm isn't too bad 3 weeks later, while it can feel weak/sore/stiff, it has no actual failures (I've re read all the thread stickies). Neurologist saw nothing wrong with my crazy worries about tongue/throat, or body clinical weakness or tone.

It is only the newly brisk reflexes that I have been worrying about...... re reading the stick thread, it sounds like they can be normal enough, or caused by anxiety (yep!).

Again, my apologies, I do realise I'm being stupid. It's hard to see the wood from the trees sometimes...... when you're the person acting foolish.

Thanks all again, all of you are phenomenal in how/what you deal with. An inspiring bunch.
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