[Lisa Ryan]

Thanks kindly Stephanie, appreciate all the helpful ideas and words.  I am going to email the Mayo Clinic and go from there.  With Corona they may not be taking any new patients but I agree with what you said, it is worth a try so I can find out.  I would just hate to go through all of that and still not have an answer but I guess I won’t know if I don’t try.  I get to doubting myself in my head thinking, it’s not “that bad”, maybe out of fear of knowing and then I try to say even if it is ALS, what would knowing early do?  I could stop searching and searching and analysing every bit of my body and actions every day.  Then I think is it better or worse to know.  I am just afraid, truly scared.  I want to know but then at the same time I don’t.  This is so very difficult to deal with and I can’t talk to my family, they don’t understand what I am going through.  My sister has anxiety so I can’t talk things over with her.

I hope for the best for you and your dad, I hope he does not suffer and that he can find some happiness, he’s got a great daughter fighting for him! 🙂

[Lisa Ryan]

Thanks Stephanie.  I am afraid to ask my family Doctor for a referral to an ALS specialist because I am currently seeing a neuromuscular specialist.  I think he might not want to refer me until this neuro has found something to report on but it is taking so long and all I have is “a progressive muscle disease”  and he also refers to a “possible” radiculopathy which the MRI does not show.  I don’t know why he keeps mentioning things like that and being so vague and dodgy.  I wonder if I bring this up he will think that I am just a hypochondriac or not allowing my current doctor enough time.  It’s so stupid that I have to be so worried about what to say so that I can try to find a doctor that will be able to help.  I go back and forth in my mind with should I ask him for another referral or not.  I have a phone appointment next Wednesday so I need to figure out what I want to say by then. 🙁  This is very tricky.

[Lisa Ryan]

Hi Stephanie, thanks again for the info.  I’m wondering if your dad had the split hand sign? I definitely have that but my Dr is not putting any weight in my clinical signs.  I think he is only using the EMG to diagnose which is extremely frustrating.  Is that your experience with your Dad, they were not evaluating his clinical signs enough to be able to diagnose him early in the disease?

[Lisa Ryan]

Hi Karl, you have really taken to the natural way of doing things which i do agree with and have read much about this.  I have done a lot of reading on how food affects the body and I am trying to eat very clean avoiding any food that causes inflammation.  I have started supplements on my own and have been basically following an anti-inflammatory diet but  it includes some of the things that you list as not allowed for you as advised by your naturopath.  I have thought about going to see a naturopath to try to get help with this.  I have heard about mercury and read about removing toxins from your body.  The only exposure I have had to mercury, besides my tooth fillings (I only have one left that is a metal filling) was when I had a leaky water tank replaced.  At the very bottom there were 3  or 4 small pebble sized mercury balls floating in the last of the water that was drained.  I have no idea if this might have affected.  I lived in that house for 3 years using that hot water tank.  I think the process to remove mercury is called Chelation therapy.

I believe I was tested for Babinski sign one year ago and it was negative.  I will ask my doctor for heavy metal testing, it’s a good idea to think about having that done.

I hope that your naturopath continues to help you and I really hope your health improves.  Keep us posted on your EMG in January. Best of luck to you and thanks for your response 🙂

[Lisa Ryan]

Thanks Duane, I am in Canada but thinking of possibly going to the Mayo Clinic. I think that is a good idea, will cost me a bundle but I don’t know what other options I have except just wait till they are good and ready to make a diagnosis.

My EMG on Sept. 11 consisted of a total of 11 minutes of EMG and they tested 8 muscles, nothing in my back or trunk or hip.  I know exactly how long it took because I recorded the appointment with my iphone.  Some muscles were only tested for 30- 45 seconds.  This is shoddy testing to me.  He obviously did not want to find anything.  The first muscle they tested in between my fingers had denervation, after that he seemed to rush through the rest.

I wish you well and I hope you have very slow progression.  Thanks for your input!

[Lisa Ryan]

Thanks so much Stephanie. I’m sorry to hear that you and your dad had to waste so much of your time going to endless appointments.  That is so unfortunate and very stressful.  Hearing this makes me so angry at the health care system.  I am in Ontario Canada and it seems it’s the same no matter where you live.  I just want to know why??  How come these neurologists cannot pinpoint this earlier in the disease.  It is so sad to me.  What a shame, wasteful loss of time.  I hope your Dad is getting very good care, he deserves that, everyone does.  I can identify with what you are saying about all of the specialists, I have seen 2 ENT’s and just went to the hospital to do a pulmonary function test because I get out of breath at times for no good reason.  I don’t want to keep spending time going to appointments for things that aren’t necessary 🙁  I will definitely look up the Mayo Clinic.  I wonder if it is open to Canadians… I think that might be my best option because I have already seen the best we have in my province and he was not helpful or interested.

Would you be able to say what you think they did different there that they were able to diagnose him?  Maybe it was the competence to read the EMG results properly?    When I had my EMG in September, my Neuro said a few times, “I think that’s ok, ya…I think that’s ok”….does not instill any confidence in me that I received a proper exam.

Thanks for the well wishes!  Same to you and your dad.

[Lisa Ryan]

John, thanks for your response, I understand totally what you are saying and I have to agree with what you said that either the doctors are not knowledgeable enough or they just don’t have the guts/bravery to tell a person until it is so obvious that anyone who has done a little searching  would already know.  It seems to vary so much and I just don’t understand their need to see widespread denervation when the person has every other single symptom…AND when there is literally no other disease that it could be.  What frustrates me is that when the doctor hears that I have no grip strength in my left hand and I drop things all day, when things started in my right calf and I am now tripping on nothing, it is asymmetrical, he has confirmed clinical weakness, I have an abnormal EMG, no sensory problems, it is progressing, I have visible twitching and cramps and I am 56 years old,….when we have eliminated everything and done every test except a spinal tap…..what is literally left that matches everything I just said.  Nothing, not that I can find.  I like you have spent countless hours, over the last few years researching endlessly and being rational and logical about this and there is not one thing, despite all the mimics that fits what I am experiencing.

Sorry for the rant but I am extremely frustrated.  I think it is a crime that no one seems to look at all symptoms and put 2 and 2 together to arrive at a diagnosis.

I actually recorded my appointment on my phone and I have listened to it a couple of times.  He was definitely trying to pick the right words and when I kept saying what is still on the table.  It seems only ALS, he said, well that’s why I keep doing these test to make sure it doesn’t turn into that.

He had me tap my index fingers to the crease on my thumbs and because I could do that he said ” If it was als, you wouldn’t be able to do that”.  I’m sure I wouldn’t be able to if I was in advanced stages but I am trying to catch this thing early so I can intervene and try to help myself the best I can ..

I get what you are going through,…totally.    All of us who just cannot find a doctor willing to help 🙁

[Lisa Ryan]

Thanks Scott, I am glad you finally got an answer and it’s a good thing you seem to have slow progression and I hope you stay that way!  Thanks for the input.

[Lisa Ryan]

Thanks John, I am very sorry to hear that you do in fact have ALS 🙁  I am glad you did find out early on so that you can plan and deal with things proactively.  I am thinking that I might need to go to a major center to get a diagnosis, even if I have to travel to the USA. It might be an option for me once covid settles down.

[Lisa Ryan]

Thanks for your input Duane.  You did get lucky with your doctor didn’t you!  I don’t understand why I am having such bad luck with my doctors or why I am always getting the runaround.

Can you comment on how many muscles they tested?  I think my doctor did not want to test a lot because if he did it would probably have shown widespread acute and chronic denervation.  As it stands my left bicep had polyphasic signals, the space between index finger and thumb had active denervation and the two muscles in my calf had chronic neurogenic changes so they have already gone through denervation.  I am so frustrated with this process and thinking of this every waking moment.

[Lisa Ryan]

Hi Bill, I have been seeing a neuro muscular specialist.  It is he that seems to be delaying and not wanting to confirm anything with me.  What is really frustrating is that in October 2019 I did see an ALS specialist, the head of the department and a leading specialist in Canada.  I went to see him but when the door opened, it was his fellow doctor that is in training for ALS.  He was a neurologist but I still think that he just missed some signs in my emg and also missed clinical signs.  I only saw the head doctor at the end after his student left and went to talk to him about results.  He brushed me off saying I had chronic fatigue syndrome and told me to forget about my fasciculations and cramping.  I was very angry.  I think it was the student doctor that did not recognize subtle signs of early ALS.  I guess I can ask my own family Doctor if he would be willing to refer me to another ALS center…I am so upset at the wasted appointments with doctors that are learning.  I understand they need experience but it seems to be at my expense 🙁

[Lisa Ryan]

Thanks Alex.  I might ask my family Doctor to refer me to another city with an ALS specialist and try to get looked at by some fresh eyes with no past history.  It doesn’t shock me to read that your symptoms resemble mine.  I have already felt that there is nothing else it could be.  Seems like my Dr. does not want to take a chance that he is wrong even though I know he is thinking it could be ALS.  Wishing you the best!