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sdca619

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Sep 16, 2019
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Learn about ALS
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Hi all,

I’m terrified and need some help. I’ll try to be brief.

About two months ago my eyesight in my right eye became totally blurry. It’s improved now, and almost back to normal, but I’ve since had other symptoms develop.

Just over a week ago my right foot went numb and within a few days it spread all the way up the leg. That leg is also weak and heavier to move. I don’t think I have drop foot, but the leg is heavier, stiff, and my gait is altered (and noticeable to others).

I went to my PCP who examined me and seemed a bit concerned. She did a mini neuro exam and noticed what she called mild ataxia (that was with the finger to nose test, where I missed the target slightly). Left side is totally normal. She has referred me to a neurologist, but the next available appt wasn’t for almost two months from now!! I asked her what she thinks the problem is, but she wouldn’t really say; just felt like I needed a neuro eval and possibly MRI and further testing.

I’m not normally a hypochondriac but the uncertainty made me do my own research on the Internet, and led me to ALS, especially given the weakness in my right leg. I don’t notice any twitching or cramping, but there is the stiffness, heaviness and weakness, and I read that ALS often starts on one side, one limb.

I know you guys can’t diagnose me over the Internet, but what do you think?

Thanks so much for any thoughts. You are wonderful answering questions by anxious people like me.
 
Hi there. Please read this if you have not already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

Nothing you describe sounds anything like ALS. The numbness in the foot and the eye symptoms point away from ALS. On the other hand, MS may be a concern given the eye symptoms. But that is something that really needs a neurologist to diagnose. Perhaps your PCP can order an MRI. If abnormal, she might be able to expedite the neurology appointment. If you have not yet seen an ophthalmologist, that may also be helpful.

But ALS is not the problem here. Best of luck getting it evaluated quickly.
 
Hi there. Please read this if you have not already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

Nothing you describe sounds anything like ALS. The numbness in the foot and the eye symptoms point away from ALS. On the other hand, MS may be a concern given the eye symptoms. But that is something that really needs a neurologist to diagnose. Perhaps your PCP can order an MRI. If abnormal, she might be able to expedite the neurology appointment. If you have not yet seen an ophthalmologist, that may also be helpful.

But ALS is not the problem here. Best of luck getting it evaluated quickly.

Thank you so much! This was so helpful. I read through the sticky, and based on my sensory symptoms, I understand what you are saying. Any clue as to ataxia? Is that something ALS sufferers get or is that also off track.

I followed your advice and my PCP agreed to go ahead and order MRI. I was actually able to get a cancelled appointment for next week, pending insurance approval, so fingers crossed). Couldn’t get into the ophthalmologist very soon, but made an appointment with my optometrist for tomorrow for a check up.

I’m still nervous but feel a bit better with a plan of action, hoping it is something treatable. Thanks again. I will report back briefly for benefit of any others who may get similar symptoms.
 
I reread your first post. It looks like all the symptoms have been on the right side of your body. I’m glad you’re getting an MRI. I presume it is of your head. That should be very helpful in evaluating the problem.

Ataxia would not be a typical symptom of ALS. ALS is not a consideration in your case. But do let us know the follow up on all this.

Best of luck.
 
Hi all,

Promised to update with more info. I saw the optometrist last week, and she noticed some inflammation of the optic nerve. She referred to it as mild optic neuritis, which would explain my visual symptoms. I have a referral to an ophthalmologist.

Had my brain MRI Monday am. My PCP called yesterday evening, and they found some lesions. I don’t have the report yet, but radiologist said something like “clinically correlate for demyelinating disease process such as MS.” That’s just what I wrote down from what my PCP said. She is going to try to expedite the neuro appt.

I’m very scared now and don’t know what to expect. My PCP said that neuro will go over diagnostic details and possible treatments, bc it is a very specialized area. She tried to reassure me, but obviously hard to relax given the limited info. I’m male and in my early to mid 30s btw.

Anyway, just wanted to update. I realize I’m prob in the wrong place here, but also just wanted to thank you for taking the time to reply to my earlier ALS fears.
 
Yep, you’re in the wrong place here. Optic neuritis is not part of ALS, but it can be part of MS and some other autoimmune conditions. Fortunately there are treatments for those.

So, get the neuro and ophtho appointments as soon as you can, and don’t panic. You’ll be able to get help.

But happily, this isn’t the forum for you.

Best of luck.
 
Yep, you’re in the wrong place here. Optic neuritis is not part of ALS, but it can be part of MS and some other autoimmune conditions. Fortunately there are treatments for those.

So, get the neuro and ophtho appointments as soon as you can, and don’t panic. You’ll be able to get help.

But happily, this isn’t the forum for you.

Best of luck.

Karen,

Thanks for your encouraging response. I no longer have ALS concerns in large part thanks to you, and after doing a ton of Googling, it looks like MS, although far from ideal, is treatable with meds, diet, lifestyle changes etc. I will try to figure all that out step by step with my doctors.

Thanks for all you do in responding to people despite your own difficulties. It must be frustrating dealing with all of us coming on here with fears. Your patience and guidance are appreciated more than you can know.

Best wishes to you and all.
 
Hi all,

Just wanted to close this up for any future readers who have similar symptoms to mine. Bottom line, Karen was right.

I was able to get into the neuro sooner with my PCP’s help. She immediately told me that ALS was not a consideration from my symptoms, as Karen predicted. However, my brain MRI showed lesions consistent with MS and in the correct areas to cause my symptoms, ie consistent with my clinical exam. Based on that, and the optic neuritis, I was diagnosed with MS, albeit what she described as a relatively mild case with no significant motor symptoms to date.

It’s all very overwhelming but I know I need to be thankful that it is treatable. I will be starting disease modifying drugs soon, and meet with the practice’s MS nurse. I’m hoping to complement my drug regimen with some dietary and exercise regimens and have been doing a ton of reading on that.

Anyway, just wanted to update in case it helps future worriers. Thanks so much for all your help, especially Karen. Best wishes to all.
 
Thank you for updating us. Good luck . MS is not something you wanted of course but a mild case sounds good and,as you said, it is treatable.
 
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