Two years ago no als. Now, maybe als?

[Valin]

Hi !
In june 2011, I wrote on this forum about some symptoms I had for a few months . Very nice PALS took their time to answer me and they were all saying NO ALS. Since I'm not on the hypocondriac or anxious type, I followed the advice and left the forum and got on with my life. Unfortunately, my symptoms changed, some disappeared and others became more specific. To make a long story short, here are the symptoms that stayed: weakness on the right side coming from the shoulder and the thigh, tightness of the throat and lower face, on and off difficulties swallowing, and twitching.
I was seen by a neurologist who suggested after a few visits that it could be related to menopause ( I'm 50) so after more than a year, when I saw my gynecologist for a routine exam in November 2012, I talked to him about this. He performed a clinical exam which the neuro I was seeing did only once (first time I saw him) and noticed atrophy in my back (around the shoulder blade, this is where the weakness came from!) and on my right thigh. He also saw some fasciculations. He then called right away the department of neurology to book an appointment with the neurologist in charge of the ALS clinic and ordered MRI of brain and spinal cord and some blood tests.
Yesterday I saw the neurologist of the ALS clinic, the results of MRI only showed mild spinal stenosis seen 22 months before,as for the blood tests: Thyroid, ck, magnesium were normal, B12 was on the high side, and the protein electrophoreses showed a mild polyclonal gammaglobulinemia indicating an inflammatory process. She didn't seem concerned about these results and performed NCS and EMG (2 insertions, thigh and shoulder). She was very evasive about the emg results but said the NCS were normal. She rushed out of her office telling me her secretary would call me today with some more tests and she left saying she wanted to see us both (my husband was with me) in February ( kind of soon for such a busy neurologist...).
In november I started feeling the left side of my lower lip swollen, once that feeling was gone, the lip was somehow deflated (if I pinched it, the skin sticks) I kind of guessed this is atrophy, then, that feeling went clockwise around my whole mouth, a little bit every day. Today there is only the little right corner of my mouth which still closes fine... I know it may sound silly, but this symptom is the one which worries me the most.
I know this is a very long post and I thank you if you are still reading it. But all this put us back on the ALS track and if any of you could still tell me NO ALS I would be very grateful, I guess I'm looking for some hope. Thanks again,
Julia

 

[Barbie]

Julia, we can not tell you for sure one way or another becasue we are not doctors. Don't give up hope--sounds like the Neuro was a bit evasive. do not dwell on it possibly being als until after your appt in Feb. be very direct at that time and tak a list of questions with you. she may think it si something else, and not realize you are worried about als.

 

[ottawa girl]

Julia,

Are you surviving Montreal's -21C? Here in Ottawa it's currently -28C.

I wish there was something I could say to ease your mind, but take heart, and wait for your next appointment. Please do not read too much in the neuro. saying you "both" should come to the appointment. Many doctors say that as a matter of course, especially if the spouse is in the room. Also, oftentimes physicians exit quickly due to a waiting patient, a meeting, a telephone call etc.

Wishing you the best. Hope you let us know the outcome next month.

 

[Valin]

Thanks Barbie and Ottawa girl for your kind words, and yes -21 is awfully cold but -28 ! I bet not a lot of people skating on the Rideau canal!

I will take your advice and wait for my next appointment. The mouth symptoms are just really bothering me and as a high school teacher, I really need a strong mouth . Bad enough I can't write on the blackboard anymore.

I will keep you inform on next appointment.

Julia

 

[petlover]

Hi Julia. I think the fact that she is ordering additional tests is a GOOD sign! Maybe she saw something other than ALS and wants to confirm with additional blood work or something. Since there are no blood tests for ALS, I would view more tests as a good thing! While I know it will be impossible not to worry (I'm worrying myself sick waiting to get in to see the ALS specialist), there are a ton of different ways to interpret her behavior.

I totally understand about the mouth thing. I teach college and the idea of losing my ability to speak is really scary. I hope that you have something treatable and that you get to the bottom of it soon. Hugs!

 

[Kathylund]

Julie, is there a possibility of maybe emailing the neuro and tell her your concerns?

 

[Valin]

thanks Kathylund and Petlover for your concern, I'm still waiting for her secretary to call me with the additional tests. When I was in her office, after the emg, I asked her about the results and ALS and she said that MS was ruled out, spinal condition was ruled out, as for ALS she couldn't rule it out at this moment , she needed more testing. My husband felt she didn't want to answer... Anyway, I don't want to let anxiety get over me...although it is difficult. I wake up last night and felt the soft twitching that reminds me something is wrong... I had a lot around my mouth.
I will keep you inform about the additionnal testing she will be asking for. julia

 

[eibhlin]

Julia,

ALS is hard to diagnose, but it can be ruled out or in by a nerve test, called an EMG. I was told by a neurologist that I did NOT have ALS, but when he did the EMG, he found out I did. So have the test and let us know how it turns out.

Eileen