Questions regarding the diagnosis process...

[Gaia Mormont]

First of all I would like to thank all of you who run this forum with true compassion and honesty. I've noticed you all say what needs to be said when it needs to be said. I appreciate that. Second, my heart goes to all of those suffering and watching those they care about suffer with a horrible disease.

About myself. I am 46F and I have always been incredibly athletic. Since last summer is when I started to become concerned that something was off. I've never been one to rush straight to the doctor the minute something is wrong, in fact quite often I wait too long.

It started with a severe pain in my lower back that started intermittently and then progressed to more frequently. The end of October, I woke up one morning and I couldn't walk. I don't mean I was paralyzed... I mean the muscles in my legs, especially the right leg, just wouldn't respond to my brain telling them what to do. I made an emergency appointment with my doctor and she sent me immediately to the emergency room. I underwent a battery of tests, an mri, but no hard diagnosis was made. My L-region of my spine showed moderate degeneration and mild nerve impingement. (long story short from my mri results). My doctor was 100% convinced that was NOT the cause of the weakness in both my legs. My physiotherapist was 100% convinced that WAS cause of the weakness.

I went to physio twice a week for six weeks until I just couldn't afford it any more. The lower back issue resolved slightly but not the strange weakness. I bought a tens machine and it has been a lifesaver over the past months. The weakness, especially in my right leg muscles, can be described as just walking along normally and then all of a sudden stumbling because my leg gives out.

Over the months since I've had a bunch of blood tests to rule out many diseases. Lupus and Lyme disease have been eliminated. It's nothing blood related. My B12 levels were slightly low so I was put on a supplement. I finally had an appointment with a neurologist in July. He did the nerve test and the emg. He asked me so many questions that got me thinking about the past year and some symptoms I had passed off as related to my lower back issue. For example, tripping over seeming nothing. Trouble with stairs, both up and down.

But, here's why I no longer believe its related to my back. The weakness has now spread to my right arm and hand. In the spring I woke up one day and felt like I had pinched a nerve in my shoulder. The weakness started there and spread to my elbow, wrist and then my hand. It has never gotten better. The tremors and spasming cramps in my hand are obvious and I try to hide them but people have noticed.

People at work have noticed my decline but I have said nothing to anyone about my issues. Recently, two separate people have commented on me slurring my words. I have lost core strength. I can't lift things I could once lift. I struggle opening doors that were never any issue. I struggle with stairs. Twice as well I have choked on mucus while trying to give a speech. It's embarrassing but yet I have told no one. I am a very private and independent woman. This is destroying me. The thing that made me finally post here was the other night, our management team all went out for dinner and i ordered steak. Halfway through dinner everyone noticed I wasn't eating. I joked it off that I wasn't super hungry, and the food was fine but the reality of it was I couldn't cut the steak with a knife and fork. My hands couldn't hold the utensils. This was the first time I noticed something weird with my left hand. I took the steak home and ate it with my fingers. I was heartbroken and embarrassed.

So here are my questions if anyone has time to answer them I would be so appreciative:

1. The disease ALS never crossed my mind until my neurologist appointment. After the appointment, I googled the questions he was asking me and the tests he was doing and I did an "Uh oh" out loud. he told me right at the end of the appointment that my nerve test seemed okay. (he did my right leg and arm). I was so sure it was a nerve issue that I was shocked that it wasn't. He booked for another MRI on my entire spine and said he would discuss the results with me after that. He said nothing of the emg and no results were posted on my health app. (Any results are always posted right away from any other test I've ever had in the past few years.) Is it normal the doctor would not share these results until he's sure?

2. How closely related are MS and ALS. I know both are diagnosed by a process of elimination but it seems the top two of what my symptoms are... Anyone else have this experience? I truly pray it's neither but I am getting worried.

3. should I tell my coworkers what is going on? I don't want any sympathy or pity especially without a formal diagnosis. Truthfully, I am not the same as I was a year ago and I fear they are gossiping I have a drug/alcohol problem with my slurring and stumbling. The same with my family and friends. I don't want to cause panic until I know something but I have to assume they notice something as well. I've gone from incredibly active to laying on the couch or in bed all day on my days off. I never go out any more because I fear of falling or drooling or doing something embarrassing.

Finally, the most recent MRI is scheduled for December. It is very hard to get an MRI where I live but the delay leads me to speculate that there is nothing serious. If it was an emergency I think they would get me in sooner. But I don't know how I can go until December without telling anyone. Perhaps that is what my vent here can help with. If anyone has read this far... thank you. Maybe putting my fears into the universe will help them dissolve. Is it normal for such an amount of time to pass for the MRI if the doctor suspects something?

I appreciate all of you. Thank you again.

 

[Nikki J]

I don’t know the rules in Canada about what shows in the app. Before the US had a rule that things have to be there an emg was for a long time either not available ot had to be specially put there by the doctor. Other things showed up automatically but emgs and some other things didn’t

I know there are long waits for things in Canada but I do think doctors can put a rush if needed. You could perhaps message them and ask if it is ok to wait.

MS and ALS are both serious neurological conditions but very different in disease process MS is a demyelinating disease. ALS in a motor neuron disease. An MRI is more important for an MS diagnosis. For ALS it is more a rule out other things

If people comment on your symptoms rather than speculating you could say something like I have been concerned too. I am seeing the doctor and having tests but I don’t have an answer yet

We have Canadian members who know the system better than I who will no doubt chime in

 

[ShiftKicker]

Hiya-

Sorry you're struggling with unanswered questions. It's a terrible place to be. I understand how dire the situation is in AB with regards to medical care. The wait you're looking at is long, but not as long as what some people are looking at. They definitely do triage and prioritize for sure- so it looks like they don't think your situation is an emergency or in need of immediate attention, but in my opinion, given how slow things are, December means they are taking you quite seriously for sure.

What kind of neuro were you seeing? A general neuro? Regardless, you can contact that neuro's office and request the EMG results. They may send the report to your gp to give to you, but they are yours and you are entitled to them. If you feel things have changed since your last visit, you can also contact the neuro's office to let them know of any changes you are experiencing and request another appointment for a clinical exam- they have a baseline from your first appt and can track those changes.

Re: speaking with your coworkers- it's up to you how much you wish to disclose, but Nikki has provided a good solution. If there are one or two coworkers or a supervisor you feel comfortable with talking to, a discussion with them. You can let them know how much they can tell others so you aren't explaining to people over and over. It can be hard to do, but you may find a great deal of quiet support that way.

Take care

 

[Gaia Mormont]

Thank you for your reply! Great advice for the coworkers. I will try it.

 

[Gaia Mormont]

Heyo.

I so badly want to defend the medical care here in Alberta, but ya. It's kinda bad. Thanks for the perspective on the wait times. I had a friend who waited 3 months for an MRI when they suspected breast cancer so I think a 4 month wait for an MRI doesn't seem so bad.

The neuro I saw was a general neuro, but the research I did on him after my appointment showed him to be a migraine specialist. I personally am blessed to never have suffered from migraines. So, I assume my file came across his desk and he wanted a challenge? haha not haha.

He had a lot of bad reviews but I found him to be amazing. He was compassionate and asked me so many questions I lost track of many of them. He adjusted the nerve study to include my arm when I told him of the new issue that has occurred since my initial referral. (It took 7 months for the appointment, though my GP did offer to fast track me a number of times. I wasn't too worried at that point.)

I didn't know if I was officially his patient after only one visit but I will take your advice and call the clinic and have them send me the EMG. I was reading here how so many people had copies and I was like what the heck. I want mine. Just to put my brain at ease one way or the other.

He was very quiet about what he was suspecting, just that he was sending me for another MRI to figure out what was going on with me. He definitely didn't shoo me out of the exam room and assure me it was nothing. I've read here that many people found out yay or nay right at their appointment. Guess I wait awhile longer.

Seriously though, thank you for just letting me vent and the advice and answering my questions. The uncertainty is stressful for sure. Letting it out in some form has been therapeutic.

 

[ShiftKicker]

Yes, you would still be his patient until he refers you elsewhere or tells you it's not a neuro issue and discharges you. Your gp is likely to have a report from the neuro as well, which you are entitled to- so you can call your own doctor's office and ask for it. Online reviews for doctors tend to weigh heavily in the negative, as usually the only people to provide reviews are ones who wish to register complaints for one reason or another. It sounds like you encountered a thorough specialist who took you seriously and was interested in working through the issues.

The Canadian system is different than the US one in that we're a bit more passive here in getting our own medical reports- folks in the US seem to have online access and/or get provided their reports more easily or as a matter of course. You're entitled to your medical documentation and it is not unreasonable to ask for it. I am positive the care you're getting is excellent, just not as quick as you might wish it to be. I'm in BC and we're in the same boat, re: medical system. Overloaded, underfunded and sometimes a victim of political whim. It really sounds like you're in excellent hands though, despite what his specialty may be.