Need some clarification

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Itsmorin

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I have read the stickies. I do have some questions for clarification though

34 y/o female. I will begin by saying my symptoms do seem to be sensory in nature and I have read the sticky. Before coming here I believed my muscle fatigue was “weakness” as well as buzzing/tingling/crawling and tickling feeling. This is how I described it via a phone appointment with my family Dr. back in October. He sent in a referral for a neurologist who I saw in the new year. As I interpret it, it is the inability to do and not harder to do? I have not lost function and don’t seem to have any weird gait or “inability to do”. Is it very noticeable when a muscle has lost function?

I have seen the neurologist twice now. (1st appt Jan) It was suspected possible b12 deficiency because I was low normal. I had a quick conversation of symptoms, he made me walk in a line foot in-front of another. Eyes closed with hands out. Nothing crazy. Had a nerve conduction done and that was perfect said nerves were great. But after my first appointment a few months later, he asked me how I was and figured my symptoms should have been gone. I came in for a second appointment shortly after (May) and he suggested maybe doing another nerve conduction and possibly an EMG. He did a few more quick neuro tests. Made me press up and down with feet in his hands rubbed cold metal up and down my legs, tapped wrists with metal and his thumb between.

I guess my other question is, would he have seen “weakness” that would warrant an EMG. Should an EMG still be done or should I not worry about this anymore and he would’ve seen something? He decided not to do it and ordered an MRI. I’m in Canada and our wait time is about 6 months for the MRI through our healthcare so I will likely pay privately to get it done next week. I’m a mom of two girls 2.5 and 1 and I’m just obviously worried. I have tingling bilaterally in both feet and often below knees into the legs and sometimes hands.

I have all day everyday twitching (all over body) and this week both legs or one worse than the other feels tight. (Is this spasticity?) I have read sensory points away but I was curious if it’s possible, if there is twitching and spasticity together does that warrant concern. Or would it be clinical weakness and either twitching or spasticity together etc? I have recently gotten a stiff right wrist and slight pain type feeling from wrist up forearm. I’ve read stories of people suspected of carpel tunnel and it being ALS.

My mother in law (ex husband) passed of ALS and her initial diagnosis was MS years prior. I am not sure how that got crossed at all and I don’t think we dove into it at the time as her condition was quickly progressing. For these reasons are why I am asking for clarification and thoughts. Thank you so much for your time.
 

lgelb

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You have the right to ask what differentials he is trying to rule out with the MRI (MRI of what?). That would probably help you determine whether you really want to pay for it yourself. I would think that if he were truly concerned for MS, a brain tumor, or spine problem that he would have tried to move it up.

If you had a normal NCS, with your lack of motor impairment, I understand why he didn't suggest an EMG.

No, this doesn't sound like ALS. Sorry to hear re your MIL.

Best,
Laurie
 

Itsmorin

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Hi Laurie,

Thank you for your reply. When I contacted the clinic, they did say it was based off of importance and she didn’t seem to think mine was urgent and gave me a time or 5/6 months. (Although he had said it shouldn’t take long, 2/3 months) I am getting a head and c spine done. He did tell me MS didn’t sound likely, but this was prior to him knowing an area of Canada I grew up in until age 13(high rate of MS, however no family with it)

I would imagine that (and I did say “weakness”) if he had truly seen weakness then he would have, and I realize I should have trusted that. I now know the word weakness is wrongly used for fatigue and I believe that’s where my anxiety kicked in because of the other symptoms. I thought I should have had the EMG, but after all I should have had trusted the doctor. Thank you for bringing me back to centre.

My heart is with all the FALS/PALS/CALS. I appreciate your thoughts and time taken to answer questions.

If it is helpful and acceptable, I would like to keep this open for updates when a diagnosis is reached in the event anyone comes on with some similar symptoms/questions/worries
 

lgelb

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Of course, please update us when there are more findings. Threads close automatically after a time, but you can open another one if needed for your report.
 
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