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yani

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Joined
Sep 9, 2008
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Reason
Learn about ALS
Country
uk
State
Strathclyde
City
Glasgow
Hi.

I am extremely worried about my partner.

My name is Yani and my partner who is 49 is very very anxious, weeping a lot and has
panic attacks. These have come about due to symptoms she has suffered over the last
5-6 months. She has also been checking the internet to discover possible causes.

It began with numbness on the left side of her face and pins and needles in her left
hand. Doc said hand problem was carpel tunnel.
She then felt burning sensations on the soles of her feet and showed a slight loss of
sensation in her ankle.
She also started having sleep starts and small involuntary movements of her limbs
while at rest.
On one occasion she felt a very, very mild loss of strength down her left side which
has never re-occured.

On going for a check up the doctor performed neurological tests and noted -

General increased muscle tone
Reflexes - brisk but present
Mild resting tremor

He didnt say anything other than she checked out ok but noted in a letter to her General Practioner the above observations.
Both docs dont seem unduly concerned.

She has now developed what she feels is a lump in her throat, dryness and a tightening
around her throat. She also feels breathing is more difficult and she can at times sound hoarse. This symptom comes and goes.
There is also some twitching in her thighs , face (below the eye) arm and hand.
She is very stressed and highly strung with having to live with the fear of what might
be.

At present there is no major weakness apparent in her legs or arms. Her speech is
normal although her voice sounds nervous.

I pray it is not what she fears.

Is there anyone who has had similar presenting symptoms or could all this be more
stress related.
 
Hello Yani

The sensory symptoms (numbness, pins and needles, buring sensations) are things that are typically not seen in ALS. There was a study done recently that showed that a small percentage of ALS patients can have some of them, but again, it is not common . . . so much so . . . that as soon as a neuro hears of such symptoms . . . they almost dismiss ALS as a diagnosis. Resting tremor is also not typically associated with ALS.

The sleep starts could very well have been caused by anxiety. It isn't definitively known what exactly causes them but it is hypothesized they are due to a release of tension in muscle. When one has anxiety, tension is certainly going to be increased in muscle.

Increased anxiety can also cause increased deep tendon reflexes as well as the "lump in throat" feeling and muscle twitches. It's my guess that the muscle twitches are what ulitmately caused her to think she has ALS. It pisses me off that when you google muscle twitches, ALS gets so many hits. Many, many, many, many other benign things cause muscle twitches.

You also indicated that she felt weakness in one of her limbs on one occasion. Weakness does not go away with ALS.

I certainly can't sit here with 100% certainty and tell her that she doesn't have ALS, but I'm not really seeing much that points to it. She might very well have something happening to her that is causing her symptoms, so tell her to keep the lines of communication open with her physicians.

Take care.
 
Thank you so much for giving us some hope.

We were told by her G.P. that the reflexes and muscle tone/tremor could be caused
by her anxiety. She is just suspicious and thinks they wont say until more develops.

I think when you start believing its serious then its difficult to break that vicious circle.

She is also at the age where changes will be occuring in her body and I wonder if
this is where some symptoms are originating from.

I will try my best to reassure and calm her.

Thanks for the quick response.
 
Hi Yani,
You might want to mention CIDP to the doctor as a possibility since her doctor queried carpal tunnel and she has so many sensory symptoms. My husband initially was diagnosed with carpal tunnel, had surgery for it with a worsening of symptoms and now is diagnosed with CIDP an autoimmune disease and he receives monthly IVIG. He saw several doctors and had several EMG's and nerve conduction tests before being diagnosed by a neuromuscular disease neurologist who repeated the EMG and nerve conduction studies on all four lims and he had a lumbar puncture and various blood work.
Good luck.
Laurel
 
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