Insight in my symptoms please.
Hi all,
I (F 43) don’t have a diagnosis and at the moment I don’t know whether I hope to never get one or not.
I have a lot of symptoms that look like what I read online but always with it’s own twist.
My pcp sent me to a neurologist thinking ut could be MS but when I showed up last week with a pre typed list I could see the neurologist immediately dismiss everything that could be on there.
My memory is shot, so I depended hugely on that list, but yet he asked me not to use it.
Anyway the questions I currently have are these.
I’ve had a number of symptoms on and off for years but since six weeks I have had the following symptoms that seem to be getting worse;
I’d like to know if any of you recognise them or can dismiss them.
1. Tingling. I have a tingly itchy sensation under my skin. But it doesn’t feel numb, not oins and needles, just very shortlasting itchy patches. I get them anywhere on my face, on the right side of my body and lately they’ve been very persistent on my spine. So in a few seconds time it will have been on my face, arm, hand, spine and face again. This goes on almost all day, every day.
2. Numbness. My left foot goes numb randomly throughout the day. But I can walk on it, And I can keep my balance. I don’t actually lose feeling in it, it just feels numb. When I test it the feeling on left and right foot seems to be the same.
This too comes and goes.
3. Dizziness. I get dizzy at random times but it feels like Í am spinning, not the world around me. Eyes stay in place, no nystagmus.
4. Eyes. There’s so much going on with my eyes.
First off a few months ago I started seeing flashes of light with my eyes closed. Seemed weird but it’s gone now.
Then it seemed like my while field of vision would tremble. I have filmed my eyes but THEY don’t move. It’s just my vision that trembles ever so slightly. Not always noticeable but if I concentrate I always see the tremor. Strangely not as annoying as you would think.
-The last six weeks or so my eyesight just doesn’t seem to be right. I cannot explain it. It’s not double vision so much. It’s more like vision and brain aren’t computing very well. There’s no better way to explain it. And my eyes also hurt when I look too far to a side.
I’m scheduled for a MRI without contrast for next month against neurologists advice, because ‘over 30 there will always be something visible, and his MS radar didn’t go off so it’s not MS’
I am less confident.
There’s a lot more but these are the ones that I can’t grasp. Can symptoms just come and go even within an episode?
(Non native english, sorry if I use the wrong terms)
Thanks all.
, I am glad you reached out to the community here! First, I think your English is amazing, so no worries there. Second, we can't offer medical advice or diagnosis, for your safety.
But, all that said, it does sound like you are dealing with something that needs to be addressed. Have you had any recent eye exams or do you regularly see an eye doctor? Some of our members have actually been alerted to a possible MS diagnosis by their eye doctors. And, with the amount of eye/vision issues you are experiencing, it might be a good idea to check in with an eye specialist, just to be safe.
I am sorry the neurologist was dismissive of your concerns and your list of symptoms. Hopefully, the MRI will give you (and the neurologist) some clear answers. There are a number of conditions that share symptoms with MS and your neurologist will probably work to rule those out as you go through testing. You can read a bit about those conditions here -- https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. Also, while an MRI is an important part of the diagnostic process, there are other important tests I hope your neurologist will run -- https://multiplesclerosis.net/diagnosis/tools-your-doctor-will-use-to-make-a-diagnosis.
I can't say whether you are dealing with MS or another condition. But, I can say that many of the symptoms you describe are experienced by people with MS. And, yes, symptoms can come and go with MS, sometimes seemingly at random.
I do hope your MRI goes smoothly and you get a firm diagnosis, whatever it may be.
Please do keep us posted, if you feel comfortable doing so!
Best, Erin, MultipleSclerosis.net Team Member.
My heart goes out to you.
My MS diagnosis was incidental - we were actually looking for early signs of dementia. Now, with the value of hindsight, I know that I have been trying to hunt down the root cause of non-specific symptoms for a dozen years. I presented with Lhermitte's Sign for the first time more than 20 years ago, but it's always been a "pinched nerve", or "bad posture", or yadda yadda yadda.
So yeah, my heart goes out to you.
Here's the sad and sorry truth: according to my doctor friend, most of the people who present with our symptom constellation do not have MS. Given that, let's look at the most likely cause of the stuff you're presenting with:
1) Neuritis (the tingling). That's usually caused by a viral infection. We associate viruses with colds or flus, but many viral infections come and go without overt symptoms, yet they leave behind lingering effects like neuritis. Optical neuritis, for instance, causes the flashing you're experiencing.
2) Numbness. This is typically a manifestation of a physical impingement. Yup, you guessed it, "pinched nerves". Do yourself a favour and get a massage or see a chiropractor - you might find that the numbness goes away.
3) Dizziness. Labyrinthitis - this is scary but again is normally a function of something viral. It hangs around for months sometimes but tends to resolve on its own.
4) The eye stuff. You're young for vitreous detachment, but optical neuritis and optical migraine are real possibilities.
5) Memory. This is problematic, but could point to many other things.
I'm no doctor but like everyone else here I've had to learn how to advocate for myself. This means I've absorbed a bunch of information and knowledge that regular people need not concern themselves with. The other thing is that I've lived the stuff you describe - I have more than academic knowledge
So here's a nickel's worth of free advice (ironic, given the recent "unsolicited advice" thread 😁 ): live your life. Don't borrow worries from the future. All of the stuff you have enumerated sucks enough already - don't compound the issue by adding a scary label to it. Let's assume you have your MRI and it shows your brain lit up with 100's of holes. Do you know what changes the following day? Nothing. Absolutely nothing. Your life will be exactly the same. After my diagnosis I kept waiting for something magic to happen - some fairy to show up in my living room with a list of things that my diagnosis suddenly enabled. Perhaps an invitation to a gold plated disability plan for MS patients only, or an invitation to an exclusive MS club where the chairs were super comfy and the food was all anti-inflammatory, or maybe some sort of instruction manual where all the world's MS coping skills would be revealed.
Unfortunately none of that happens. The bank still wants my mortgage payment; the grocer still charges me to deliver my groceries, and he still picks out the worst bananas; the police still give me speeding tickets (because I deserve them), and my boss still expects me to show up on time. Nothing changes except I now have a label for my crap, and a label that every practitioner can now blame my future crap on.
Go hug your dog/cat/parrot/boyfriend/girlfriend/spouse/kids. Go bowling and laugh when you walk around all drunk even though you didn't drink. Go sit in a park. Go read a book. Go see a movie. Go wash your car. Go to the kitchen and prepare your favourite comfort food. Go get in a Twitter fight. Find some new music to listen to. Learn to code. Buy yourself flowers.
And take a deep breath and resolve to laugh and have fun, regardless of the crap life throws at you.
Be well,thanks for making me laugh out loud at such a weird time.
I actually am on holiday right now, and although my face feels all weird and my feet are numb I went for a great hike today, holding onto my husband as if he was a walking cane.
We laughed at the weirdness of it all. I fully intend to enjoy every moment of my life.
I don’t expect life to change drastically if I ever get a diagnosis (although I will continue to hope for that invitation to that exclusive MS club with the comfy chairs and great food!)
I am a little worried that if it is ms and it remains untreated still, there might be extra or lasting damage. Whatever this is has been gradually getting worse over a six week period and personally I’m over it, I’d like my body and mind back.
I’ll look into the virus thing, thanks for the tips.
Oh and the Lhermitte's Sign? Have had that or something similar on and off for as long as I can remember. I thought that was normal and used to play with it. I can’t find it right now, but I could make my back zzzing sometimes by moving my neck around (and kind of enjoyed the jolts) so it might be something different than Lhermittes.
Thanks for the -sollicited- advice. I enjoyed the read.
Hi Erin, thanks for your quick response.
And thanks for the English compliment, I was pretty proud that I figured out what pcp meant all by myself, and actually used it in a sentence too 😀
My vision went blurry for one day a few years back and they did some sort of vision test a few days later, when my sight had returned to normal.
Nothing showed up and they said I probably suffer from eye migraines. A type of migraine without the headaches. I never thought to go back when the other problems started, just counted my blessings that I remained pain-free.
I will look into that, thanks.
That’s why I came on this site, if anyone shares my symptoms I can be more confident in standing up for myself because something is clearly off. Be it MS or anything else.
And yes, atm I am anxious, but when all these things started happening I wasn’t at all. So it doesn’t make sense to me.
It’s been a weird few weeks, that’s for sure.
I’ll keep you posted if new things show up or when my results come in, whatever it may be. More feedback is always welcome.
Hope it will help someone else on their journey.
