Strange Symptoms Story Response
First I need to say that I am completely in agreement with the fact that MS can and does continue to produce some of the strangest symptoms, most don't seem to fit in with all the lists of 'common' symptoms we are to watch for. Secondly, many weird symptoms seem to disappear by the time we see our doctors, and leave no traces of their existence to 'prove' to doctor it actually happened. That causes us to feel betrayed by MS as it leaves me looking like I had made it up.
Experiencing new weird symptoms
I did in fact experience the weird symptoms that frightened me. I needed answers as it really was causing a lot of pain or other issues which were difficult to get through. If I repeated the same complaint often enough I would be sent for another MRI but nothing had changed enough to explain why I was dealing with those new weird symptoms and that my MS might have changed a bit or getting a little worse and maybe he could explain things more clearly so I don't leave his office with nothing more than another scheduled appointment where we go through the same issues that came and went again, just as I explained last time. I feel he has gone blind to anything I say or acknowledge what he sees.
I'm lucky enough to live a few miles from the Mayo Clinic where they have a great MS clinic. I hope to be included.
Annual exam with my primary doctor
There is one thing I need to add. About 3 years ago I had my annual exam with my primary doctor. I had no complaints as I'd already reported to my neurologist every weird symptom that had come along, hoping it would be noted on his computer file. Usually noted as 'no changes' and that whatever symptom I claimed to experienced imagined and if it existed, it was going to be gone before I got to his office again.
Pacemaker installed before the day was over
However, a week or so before this appointment I had a weird symptom that occurred only one time. While walking my dog and having a lovely conversation with her, I had to stop to catch my breath. Chalked it up to MS weirdness and continued with all my normal doings. Here was the surprise. I happened to have an appointment two days later with my primary doctor. My appointment began started like they all do, taking my vitals. The nurse got quiet, pale, and excused herself. She returned quickly with my doctor, who also took my vitals, got a bit pale, and I quote said: "I want you to go across the street to the Hospital Emergency Room, I'll call ahead." That was it, so I went across the street, checked in, and finally was told that my weird symptom wasn't weird at all. My heart rate was down to 30 BPM, and my BP was very elevated. I was admitted to the ICU and had a pacemaker installed before the day was over.
FYI: An acceptable heart rate is 60 Beats p/minute.
Learning our "normal"
My heart most likely would have stopped by the time I saw my neurologist, three months later. The moral is this, We. probably will have many weird symptoms and tend to chalk them up to MS, and so do many doctors. We have to learn our own bodies and know what our 'normal' is. We need to make sure our doctors are hearing us as sometimes it isn't MS after all, but it might kill us. Mostly we have some loose wiring in our brains, which isn't always easy to deal with. It may not be easy to but we can learn what we are dealing with and make the right moves when we know 'if this is normal'.
I believe all MSers have to go through this and thank God when the weird symptoms pass and leave only a small bit of damage in our brains, but I don't believe we can avoid them, we live with them. MS has a mind of its own and doesn't play by the rules, in fact, I'm not sure MS doesn't keep changing the rules just so people say, but you look so good... when inside we feel awful.
So go ahead and Look good, we are all here to support you when you feel awful. Learn your 'normal' and remember. Every symptom isn't MS.
Get a good neurologist that actually works with you and don't accept answers that don't fit what you are thinking. We share it all right here. As you have to have MS to understand MS. Even with the doctors, research, and the entire medical field trying to understand MS, no one has all the answers yet.
Fortunately, you will find others here who have experienced a lot of the same things you are right now, and somehow, that seems to make you feel better rather than nuts.
Remember to look outside the box, and don't blame every symptom on MS, it can kill you.
As for me I still have a lot more to do and I'm only 70 years young... and have had MS since my High School days.
Nothing is slowing me down, and nothing should slow you down either.
As long as I'm able, I do it and when I'm not able, I do something else.🤗
How many specialists did you see before finding "The One"?