Hi people, I’m WhyNot. I’m a man posting from Canada. I’ll turn 69 in August.
Have not been diagnosed yet. I have a brain MRI coming up but they haven’t
given me a date yet. I’ll try to condense my symptoms here to see what you think. This may have started with numbness in various places back in 2012.
That was a very stressful year for me. Then nothing until 2019. From May to
Oct of that year - burning, numbness and lots of tingling off and on from head to toe. Woke up one morning and couldn’t feel my entire face or ears. Went for an EMG and they said it was normal. Had a little bit of numbness and tingling in 2020 and 2021 but not much. Didn’t wanna go near a hospital or
doctor’s office due to Covid, and the symptoms were pretty mild anyway. But
once 2022 arrived yikes! Tingling basically everywhere off and on. Lots of burning and pretty intense at times. Cognitive issues with short term memory loss and problems concentrating. Tremors, frequent urination, muscle cramps,
itching, muscle stiffness, fatigue and weakness, vision problems with little dark spots flashing one at a time in left eye. Weak voice with no volume, excessive sweating, mild headaches (and I never normally get headaches), crawling skin,
muscle weakness, foot sole soreness, severe muscle stiffness and constipation.
The pins and needles are getting more intense now. Health care is free here but you’ll be dead by the time you get to see a specialist. Sorry for the depressed tone but this is messing with my head. I’m very scared I won’t get to see a doc before I’m in agony. So thanks for reading this far and just curious if anyone has had a similar experience. Seems pretty rare to get stuck with this so late in life. Thanks again, WhyNot
Hi, there…oh there is a lot going on for sure!
Quite a few symptoms do sound MS like…but maybe there is a trapped nerve. …or you have suffered a TIA…ie small stroke.
Mobility issues are a big factor is MS usually.
I am 69, problems began when I was 45…mobility…bladder/bowel accidents…stiff limbs…spasms…
It took 22 years to get a diagnosis.
Wait for the MRI…not much else to suggest. Sorry.
Boudsx
Thanks for the quick reply Boudsx. Yes, waiting for the MRI is all I can do now.
If the pain becomes too intense I might just head over to the hospital (3 minute drive away) and see if they can do the MRI sooner. I’ve got 4 metal crowns on my teeth so hoping it won’t mess up the MRI image. Still waiting for a reply from my dentist on that one. Thanks again,
WhyNot
Just an add-on to my first post… I’m absolutely terrified beyond anything
normal of maybe having to get a spinal tap. Never been good with needles
but I do what I have to do. However I just can’t wrap my head around an LP.
One person said it was such a horrible experience they’ll never allow it again.
I know that’s rare but it can happen. And what if there was a leak and they had to go in a second time for a blood patch. I read that an LP is not 100%
conclusive. Now I’m making excuses - I have a PhD in excuse-making. But
seriously, with a cognitive decline the past few years it seems like I’m afraid of too many things. Maybe with all my symptoms (and if enough lesions show up on the MRI’s) they’d be able to diagnose me without an LP. The way this has been returning over the years but now symptoms never go away I wouldn’t be surprised of they diagnose it as PPMS. I also think PPMS because I got it in my late 60’s and it’s progressing very quickly with no remissions. But
what do I know, I’m way too new at all this. One thing I do know is that stress
is not good for MS and I’m 100% stressed all the time. And sleep is very good for MS and I maybe get 3-4 hours at the most every night now. Used to sleep like a baby every night until this thing came along with all the severe muscle stiffness at night. Well, thanks for letting me sound off. Need to vent sometimes. I hope I can come to terms with the LP but I real don’t see it happening any time soon, or maybe never.
Regards to all of you,
WhyNot
Hi WhyNot
I’m in a similar position, although symptoms not moving as fast. I’m 61.
I had a visual evoked potential (‘VEP’) done here in UK last week. It was arranged within a week; I found a provider, approached them and paid myself; no doctor referral was needed. No side effects.
High P100 latency scores (i.e. above c.115) in this would help the diagnosis and, given to your doctor, might speed up the MRI date.
Best wishes
Thanks John,
Good suggestion, I may have to do that. Emailed my family doc a few days ago to request that he refer me to a Neurologist. Then if the Neuro thinks my
condition warrants it maybe he could up my priority for the MRI. The lowest
priority in my town is a 28 day wait but because of Covid backing things up
that is now a 90 day wait. Canadians (including me) have zero tolerance for
people that try to “jump the queue”. Don’t want to be like that but even at the hospital the triage nurse decides who goes first and the guy clutching his chest in pain always goes first - as it should be. At lease the Neuro could do the evoked potential tests ahead of time. And I wish I could come to terms with
the spinal tap but my anxiety won’t let me. But my Doc hasn’t responded to anything yet so maybe I’ll see if my Ophthalmologist can do a VEP in his office.
So far I have no vision problems except for the odd tiny pinhole flashes of light
off and on and no walking or balance problems so that’s a mystery if it is MS.
Had an EMG test come back normal but I just read today that you can’t detect
MS nerve issues with an EMG test anyway. Sorry for being so long winded but
I’m getting desperate. Thanks again,
WhyNot
Hello WhyNot, I fully understand your anxiety about having a lumber puncture test, but wanted to share my experience of having one immediately after my first attack in 2019. The procedure itself was painless since the area was completely numbed beforehand, and the medical professionals who carried it out do this as a matter of routine. You can’t see what is happening, since you will be asked to lie on your side in a fetal position. For me that was the hardest part of the procedure, having to adopt a strange position and be very still for about 20 minutes. In my case they had success in securing some fluid after the final of three attempts, and even though mine may have been more involved than most, I felt no pain during, or after the procedure. During the process I made a point of focusing all my energy on doing exactly as requested by the medical professionals to help make the procedure as smooth as possible. I hope sharing my experience helps to reassure your that, based upon my situation, you should find the process quite painless. I wish you luck.
Thanks Silverfox,
That is encouraging! I’m still scared and an anxiety disorder makes it worse.
But where before I would have flat out refused the test, now I’m coming to grips with maybe having it done. So that’s progress! I 'm not sure if a lumbar puncture is absolutely necessary for every diagnosis. Maybe it depends on
what the MRI’s reveal. I know I have an MRI scheduled (but no word on when
yet) and nobody said I have to do the LP so far but I assume it’s just the
standard procedure after the MRI. This is getting almost unbearable now so
I hope the MRI happens soon or I’ll be in no shape to have it done. Thanks again for the encouragement.
WhyNot
Just wanted to add …
I have been referred to a Neurologist but don’t know with whom or when the appointment is yet. I have an MRI coming up but no idea when. I’m told the MRI might not happen for another 6 months. There’s a priority system here. Priority 2, 3 and 4. I assume P1 is when they rush you to the hospital by ambulance. If my priority 4 gets moved up to priority 3 that would reduce my wait time to 6 days instead of 3 to 6 months. I’m getting worse at an alarming rate so can’t stand to wait much longer. It’s a 5 week wait even to see my family Doc so it feels like nobody cares or wants to help. That’s not the case
because the fam doc’s been great but when you can’t talk to anyone or know about the dates for appointments and every night is torture with muscle spasms etc. it feels like it’s taking a lifetime. If you were me would you head over to the hospital emergency dept (3 min drive) and let them check you out? Who knows, they might do an MRI right there on the spot. Or would you stay away from Emerg and just live with the pain and worsening symptoms until the test dates. Just looking for advice thanks.
WhyNot