Old 02-29-2016, 01:35 PM #1 (permalink)
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Default Various symptoms in just a month

Hi there - I've scoured this site for the past month and have read just about every thread pertaining to my situation. I've read the stickies over and over again, so I feel i'm learning a lot about this disease from all of you, yet I also have learned that everyone's experience is unique. I've been very reluctant to post here as I don't want to waste anyones time, but I feel I'm at the point where I could really use your expertise/advice. I'll try and be as detailed as possible. Please keep in mind all my symptoms literally just started at the end of January.

- Started feeling tingling/numbing on right side of face. Got very dizzy and almost passed out. Eventually ran down my right arm and then leg. So my whole right side was tingly. Only lasted one night and then was fine for about 4-5 days. It came back the next week but started to spread to my left side along with some other symptoms like some aches in my arms, legs, overall weakness (although I've never lost any strength). I felt like I had a lot of sensory stuff going on.

- Went to my GP. She of course ordered an MRI of brain and C-spine to rule out MS and brain tumor at that point. She also ordered a bunch of labs. Everything came back normal, except for Vitamin D low - which I already knew. All my reflexes were good. She told me to go see a Neuro.

- When I got to the Neuro, I was having other types of symptoms at that point. I noticed one night that my muscles were twitching in my right calf. That called my attention to the fact that my calf muscle looked very small compared to my left calf almost like it was shrinking. My right leg is also slightly smaller than my left leg too. This is actually what led me here to this sight. I also had a lot of other sensory symptoms going on like burning, electric shock type sensations, dizziness, hot flashes, pins and needles, etc. But not sure about listing those because maybe they were side effects to the Gabapetin and Lyrca my GP prescribed me? Anyways, My Neuro checked me over, reflexes were normal and ordered an EMG based on my symptoms. When I realized I couldn't get it until April, I went to another Neuro who did it right away.

- Neuro #2: Basically thought I was crazy when I mentioned ALS. He said my reflexes would be all ver the place and I wouldn't be able to walk on my toes, heels, etc. He preformed my EMG and told me it was all normal except for a prolonged right H wave reflex and suspects minimal residual right S1 root dysfunction and told me he would order an MRI of L spine. I actually was questioning the quality of the test he preformed. He basically said nothing was wrong with me and that I should take some xanax for my anxiety. He couldn't give me any indication as to what would be causing all these symptoms.

At the present time, I'm waiting to go to my first Neuro for that 2nd EMG in April and will take it form there and see what that shows. All in the past TWO WEEKS I have developed more symptoms. That is why I'm here today. The twitching in my right leg had toned down a bit. I have minor twitches here and there on my left leg and in various places. I have no weakness. I can still do all exercises, calf raises, walk on toes, heels, even though my right calf has become so small.

My new symptoms started two weeks ago when I developed a sore throat that wouldn't go away. Last week I went to ENT due to the fact that it felt like my throat was closing up and my chest hurts at times. The Dr. found nothing wrong and talked to me about it being an anxiety symptom. Well, now the feeling has gotten worse. My swallowing is fine it just feels like I have a stricture and my breathing feels labored at times and my neck muscles are sore a bit. At night I have pins and needles all over - hands, feet, arms, head, etc. The past couple nights I got a numbness feeling in my arms and hands and yesterday both my hands started aching. I also get a weird sensation on my head, on my teeth, inside my mouth. As I'm typing this, both of my arms feel numb and my hands feel weak. It honestly feels like every time I have the numbness, pins and needles, I wake up with a new symptom.

Now I know ALS does not have any sensory issues and I know I have a lot, but I'm at a total loss. I guess my question is - Can ALS develop and progress so quickly like this in just one month if in deed that's what it is?

Thank you for your time reading this and in advance for your responses.

Last edited by lgelb : 02-29-2016 at 03:31 PM Reason: more paras
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Old 02-29-2016, 01:59 PM #2 (permalink)
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Default Re: Various symptoms in just a month

Well, yes ALS can be slow or fast. But let's look at your overall description first.

A few things to note:

Importantly, I wonder: What changed at the end of January? Did you start a new med? Have a change in home life? Did a loved one have a significant status change? Did you travel?

You're right about all those wild sensory symptoms. They're all over, coming and going in time and place. That's not ALS-like at all. They point toward other things, not ALS.

The second neuro physically examined you and also saw an EMG with no indication of ALS. Although it's possible the EMG could be in error, the odds are very likely that it was correct. No ALS there.

Keep your EMG appointment, and fix this problem, whatever it is, but I don't see any reason to worry about ALS in the meantime.
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Old 02-29-2016, 03:33 PM #3 (permalink)
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Default Re: Various symptoms in just a month

Just to be clear, you're not taking both gabapentin and Lyrica, are you? They're cousins and that would be bad.
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Old 02-29-2016, 03:46 PM #4 (permalink)
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Default Re: Various symptoms in just a month

Well it's interesting, because I went to Greece in the last fall. When I returned in October I had a weird deep inner ear pain on the right side with an ache shooting up the back side of my head. The ache went away but the ear thing never did. My ENT said my right tonsil was infected and put me on a strong antibiotic but it didn't work. Went back to him In January and he said my tonsil AND my right voice box was red - Never found anything to wrong causing ear pain. He sent me for MRI of head and neck. It showed I had right side mild mastoiditis. I also had a T3 lesion. Both him and my GP said there's no way I could have mastoiditis - I would be having much more pain. So no one could ever tell me why I had fluid in my mastoid and why it was causing me pain. And the all this other stuff started...... I also lost my oldest son five years ago, so yes, I've been through a lot.
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Old 02-29-2016, 03:49 PM #5 (permalink)
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Default Re: Various symptoms in just a month

Laurie - I don't use them together! I only took the gabapetin for about 4 days and then my GP switched me to Lyrca. But I didn't like that either so I stopped. Was wondering though if any of those meds could cause any of my sensory issues. Have you ever heard that?
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Old 02-29-2016, 07:19 PM #6 (permalink)
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Default Re: Various symptoms in just a month

Any anticonvulsant drug can cause sensory issues, since they act on the brain. More to the point, perhaps, from what you've described, I'm not seeing any indication for your taking either of those. So stopping as you did seems the right thing. I hope you tapered off if you were on a large dose (hopefully you weren't!) but water under the bridge.

At a glance, would be ruling out CIDP and Lyme if not already done.
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