Are my symptoms suggestive of ALS, MS or something else

[Pulci]

I am a 38-year-old female, in relatively good health. 2 1/2 years ago, I had a strong tingling sensation in my arms and legs that lasted for a few months. The MRI of my cervical spine and brain were normal. Also, all of my blood work came back normal as well. My neurologist said that MS could not be completely ruled out, but he felt that a virus had caused my symptoms.
Up until recently, I have had no medical problems.

Approximately 2 weeks ago, when I was driving, my lips started to quiver as if they had been strained somehow,  and then the right side of my face had a strange, very slight numbing sensation. Also, my tongue felt a bit weird for a lttle while. I went to the doctor and had a CAT scan which was normal. Then for a period of 2 days, I had lost partial control of my tongue and I had difficulty speaking. It wasn't strong enough for others to notice my difficulty speaking, but it was a terrible feeling. In addition, this strange numbing feeling was also felt around my mouth, chin,the area above my lip, and the tip of my nose. The more I spoke, the worse it got.   Then, my tongue returned to normal, and I seemed OK for 2 days. Then, once again this sensation around my mouth and nose area returned. I met with a neurologist and the MRI of my brain and cervical spine was completely normal.

He said that we could do a spinal tap, but chances were that if whatever it was was not showing on an MRI, it would not reveal anything new at this point in time. He did say that if any new symtpoms appeared to make an appointment right away to do more testing. Since leaving his office on Thursday, I started to have twitching in my legs and a few cramps as well. Then, starting on Friday, I have had arthritic feeling aches in my hands,arms, and fingers, and my fingers feel stiff. I also have a spastic feeling in my hands. Last night my legs jerked once when I was trying to fall asleep. During my initial visit with the neurologist, he asked me if I had been droping things, I replied that over the past few weeks I did drop a few things, but it wasn't necessarily anything out of the ordinary. Now, over the last several days, I noticed that I have indeed been dropping things more than usual. Strangely enough, the weird feeling around my mouth comes and goes--some days it is normal and others not. Since Thursday, I haven't had any more problems with my tongue.

I have to wait several days before I meet with my neurologist again and I have half convinced myself that I have ALS.
My questions to you are as follows:

1.) How could I tell if I have weakness in my tongue or face?
2.) Is it possible that I could mistake numbness for weakness? I have no problem moving my mouth etc.
3.)If I had ALS would my symptoms come and go like this?
4.)I squeezed my doctors hands and he didn't feel any weakness. Is that a good sign that I don't have ALS. I feel strong, but my fingers feel stiff.
5.) What testing would you recommend?
6.) Also, my legs feel stiff (which they always are to some degree) and they don't feel weak. I ran 3 miles yesterday and although they didn't feel weak at all, I felt very rigid running. Is this indicative of ALS? The muscles in my legs appear to be strong.
7.) Should I be tested for Lupis, Rheumatoid Arthritis, and Lyme disease as well.

Any information and/or advice you could give me would be greatly appreciated.
Thank you for your time.

[Linabobeena277]

Hi!

I work as a nurse and I had similar symptoms as far as tingling in arms and lower legs. Prior to that my symptoms were (dry eyes, dry mouth, profound overall fatigue) got diagnosed with Sjögren's (autoimmune disorder). It took TWO years to get a diagnosis. I do recommend you get tested for autoimmune disorders because symptoms vary greatly and get misdiagnosed quite often. Have your neurologist refer you to a rheumatologist. They specialize in autoimmune diseases. They'll ask you about your symptoms and order labs that day. I only take one Med for mine and it's so nice to have answers after so long. As far as your MRI, glad it's normal. You should ask your neurologist to print you the report of all of your MRIs and CTs. I found mine had additional info in it that was useful in knowing why I had back pain. Sometimes they only tell you what they're looking for, so if there are no lesions in the brain then your MRI is "normal." But they didn't tell me I had C-spine stenosis (which I figured out myself by reading the report) etc which could cause some of my symptoms---still investigating. You're smart to get tested for Lyme disease. That in itself can cause many symptoms too! There's something called neuro Lyme. Mine came back negative but I keep hearing to get the lab sent to igenX since they're testing is more accurate/specific Bc Lyme labs have so many false negatives.

Best wishes to you dear :)

[valin]

I would like to know how you feel today.  I have exactly the same symptoms (face, twitching, weakness and jerking, the onset was like yours)that come and go, in exactly the same part of my body for now 19 months, ran the same tests as you did and got the viral diagnostic as well.  I'm seeing neurologist for another emg (first one was 18months ago, and normal) .  Hope you are doing well and you'll get that post....

[Quixotic1]

My questions to you are as follows:

1.) How could I tell if I have weakness in my tongue or face?
2.) Is it possible that I could mistake numbness for weakness? I have no problem moving my mouth etc.
3.)If I had ALS would my symptoms come and go like this?
4.)I squeezed my doctors hands and he didn't feel any weakness. Is that a good sign that I don't have ALS. I feel strong, but my fingers feel stiff.
5.) What testing would you recommend?
6.) Also, my legs feel stiff (which they always are to some degree) and they don't feel weak. I ran 3 miles yesterday and although they didn't feel weak at all, I felt very rigid running. Is this indicative of ALS? The muscles in my legs appear to be strong.
7.) Should I be tested for Lupis, Rheumatoid Arthritis, and Lyme disease as well.
**************************************************
Hi, Sorry you're going through this.  ALS is NOT a disease of the sensory nerves.  Thus tingling and numbness are not characteristic of it.
1) If there was weakness in your tongue , it would likely be assymetrical.  When you stick your tongue out and look at yourself in the mirror you would  see it pull to the strong side if there was weakness.  To test for facial weakness, with a partner watching grimace, close you eyes tightly , raise your eyebrows, purse your lips together tightly and then open your mouth widely.  You partner will be able to see if you do these things symmetrically.
2)  Absolutely when something is numb there isn't the proper feedback on how much force you are exerting and your estimation of how much force you are able to exert can be faulty.
3) No, ALS doe not relapse and remit.  It is inexorably downward, it may plataeu, but it does not improve (remit)
4) ALS is marked by unmistakable weakness - not stiffness nor rigidity.
5) With any unusual neurologic symptoms you need to start with a thorough neuro exam.
6)  Also, and this is important - In ALS twitching is a LATE sign after obvious weakness and wasting of the muscles has occurred.
That big jerk of the leg(s) or body upon falling asleep is called a myoclonic jerk and is very common.
Your facial episode sounds like a Bell's Palsy, dysfunction of the VI cranial (facial nerve)  this nerve handles both motor (expression) and sensory functions
The tongue is governed by a different cranial nerve.

At this point, I recommend that you put ALS out of your mind.  Nothing in your post points to it.  Your neurologist will finish the workup for paresthesias, cranial nerve abnormalities and coordination problems.  Twitching is a common, annoying and non-specific symptom that certainly can appear with force after a viral infection.  As far as the arthritis diseases, you should see a rheumatologist if they persist.  Testing for Lyme is also appropriate, but the routine tests they use are very insensitive.

I hope the info about ALS will get you through until you see the neuro.  Good luck, Quix