Before diagnosis?? Is this MS?

New diagnosis and before diagnosis
1

I’ve always been a physically hard worker (construction, ladders, etc)

My whole life - after hard physical days - even playing softball or swimming - I spend the next day really stiff & achey.

  • For several years I’ve had this weird random ache - it’s only in the morning - right after I wake up, for about 1 minute - it feels just like flue aches in my body.

  • I take no meds. Just vitamins & ashwaghanda. Drinking (sip on) 64oz of water all day, daily more in hot summer.

*Never went to the Dr for years.

  • I turned 62 last year. Notice the last 9 months real extreme changes in energy.

  • Have had blurry eyes on off nearly everyday, for over 6 years.

  • thought it was from after eating or not eating all day. Now there’s no pattern.
  • 6 months ago, along with blurry eyes - for 3 solid months I had severe migraines, severe dizziness, nausea, severe tinnitus. Finally went to ENT. He ordered an MRI. It said ‘all normal’ tho somewhat inconclusive bc I moved too much. Those symptoms disappeared as quickly as they came.

Now:

  • No bad headaches - very few mild ones. No dizzyness or nausea.

  • Tinnitus & blurry eyes persist.

Beginning to think it might be MS bc:

  • Many mornings even overcast daylight seems overwhelming to my eyes.

*Randomly feels like a ‘hair’ or an ant on my skin (usually an arm or leg)

  • Notice in last 3 months very often have to concentrate to get a satisfying deep breath. Often feels like my rib cage won’t expand enough to get a deep breath.

*Realized one day after looking at my footprints - I had ‘drag’ marks between steps on left leg.

*Sitting, my arms tingle feel like going numb.

*Sitting for any period of time, even 10 minutes - takes me 10 steps to ‘get moving’. After driving any distance I dread getting out of my vehicle bc I’m so stove up. But from JUST SITTING …!!!

*Weird leg pains. Increase in extreme back of thigh cramps (3 in past 2 months)

*Stiffness much more severe than usual recently.

*Lack of usual strength; A few times I had zero strength to do things I do easily all the time, like - a few days ago I could, today I can’t. Tomoro I can.

  • Legs randomly feel like they’re not going to hold me up.

*Back left shoulder blade numb, itches (over 3 years now)

  • Stomach itching a lot, thigh crease itches a lot.

  • Also notice strange sensation on off for years:
    Only happens when I first wake up in the morning, & only lasts about 1 minute: I feel like I’m having severe flu aches.

2

Hi,
You have quite a list of symptoms there but my guess is that many of them are “non specific”, i.e. they are symptoms of a big range of illnesses, not just MS. For example, I think numbness can be down to vascular problems. MS is really hard to diagnose, and it does require MRI scans with lesions on them. Often more than one scan.
It sounds like you are still really bothered by these symptoms and want to get to the bottom of them. Do you have a helpful GP - someone who will keep investigating/referring until you have an answer?

3

I would definitely get to the GP if I was you. Your symptoms might indicate MS or they might indicate something else. None of us are medics on this forum and it sounds like you need medical investigation,.

For what it’s worth, my first symptom was optic neuritis with near total loss of vision in my right eye

4

Thank you very much for your response.
I started a job last year where I finally have insurance after all these many years.

I will go to a GP & start getting some ideas of what these issues are.

Again, thank you for reading.

5

Thank you Hank-dogs.

This forum is very much appreciated.

Very interesting to read peoples symptoms - paradoxically, both encouraging/discouraging, & so very heartbreaking to realize what people are going thru . . .

I think the most astounding thing is -

The many things I read here & other places - where people have to go thru SO many tests, getting misdiagnosed, & some finally after so long/SO MANY dr visits, to finally get diagnosed with something, MS or whatever the issue(s) . . . in order to move forward with info & specific helps.

Its really off-putting to me - just the idea of dealing with the medical industry . . . :confused:

I have a love/hate mentality towards drs in general. But mainly, a real
visceral distrust . . .

6

Hi Sherrell
Did someone else mention the way your legs feel might be vascular? I would like to know what your doctor suggests as mine sometimes feel like trying to move concrete blocks.
One of my first MS things, before getting diagnosed, was a fall when out walking. Used to walk miles but then found that one leg got “tired”. Did not feel this was really taken notice of . After more falls I suppose my balance had left me. Have you spoken with family or friends about things you feel might have changed? It was family told my doctor how much my walking was changed and led to the neuro consult.
Aly

7

Thank you very much for the reply.

Yes the first replier mentioned the word ‘vascular’.

I do not believe my issue is DV thrombosis.

I get random achiness on the outer side of my knee & thigh on left leg. It almost feels like a cramp - but it also feels like I need to ‘pop’ it.

This leg also has started feeling extremely weak - sometimes like it’s not going to hold me up.

It’s real random. It may happen after a hard physical work day, or not. Or after a weekend of doing nothing.

I realized I was dragging it when I walked across a 15000 sqft airplane hanger. The humidity was very high and the floor was wet - as I started to return from the long area I walked across, I saw my footprints clearly highlighted in the bright light of the huge, open hangar door.

Every left step had a 6 inch long ‘drag’ mark between steps.
This was about 2 months ago
It kind of shocked me.

On the other side, my right side - it randomly feels like there’s a hair or an ant crawling or light ‘tickle’ on my calf or my arm.
I look, nothing is ever there.

Along with severe fatigue in the last year, & the blurry eyes, and other things that started -ex. noticing numb arms, I do realize I need to go see a GP.

Like I said - I went to the ENT bc of severe headaches, dizziness & nausea (that began in August). He found nothing wrong with my ears or eyes after all the weird tests. In spite of never falling, he wanted me to enroll in his balance therapy program. He did at least send me to get that MRI which was ‘inconclusive’ bc it said I ‘moved’ in the MRI.

I distrust the ENT now - bc his whole clinic is really geared towards getting people to come to balance therapy.

Anyway - the dizzyness, nausea, headaches went away in December, like suddenly.

My daughter thinks it was HBP which has been kinda high the last year.
I started taking 8000mgs of beetroot daily & a baby aspirin. So maybe that was it.

I still have the severe tinnitus & blurry eyes. Tinnitus is 247 but varies in volume. Blurry eyes are daily, but random. Cant really seem to find a cause & affect pattern. But it’s both eyes.

The severe fatigue, limb numbness, pains, & skin sensations are random but increasing in frequency & duration.

Been stiff throughout my whole life - even as a child - after waking up, or after physical activity or work.

My elderly parents said this was normal for everyone. I’ve only started considering that it was NOT normal for kid as young a 6 yrs old - to wake up every morning with a stiff body & hands.

I remember often noticing my hands being stiff as a child, & in my 20s - my whole body throughout my entire life, but particularly after physical activity/work . . .

My whole life - after getting up and taking 2 or 3 steps I’m totally fine.

But now, this real extreme stiffness - - even after only sitting for a few minutes!!?? seems to have started so suddenly - it just increased to extreme in the last 9 months or so.
When I get up now, it takes 8 or 10 steps to get moving - & also kind of staggering or leaning as I walk around the bed, and I bump into door frames . . .

Anyway, a few months ago I went to the Dr I went to in my 20s (that was always for strep or something the kids brought home from school)

But had not seen him except once in 25 years. That was 2011. They acted like it was a real inconvenience to have to start my records again. They said I had to refill out everything bc they don’t even have my records anymore . . .

I reckon I will go do that soon so I can get blood work & all

Thank you again for your responses.

I guess I should make my username
Distrustful-skeptical-patient . . .

I’m not a DR hater at all. I just dread/hate the paperwork, the difficult hasty communication in office w/the Dr, & the pig trails of errant diagnoses like already started with that ENT, taking off work, the extenuating visits/being sent to other Drs where all the minutia starts all over again . . .

I can’t keep ignoring things tho.
Bc until now, it WAS easier to ignore or just live with these issues than deal with the medical red tape - now I just can’t ignore things . . .

I do realize, this is not a Drs clinic. What it is - is a place to share what’s going on, feel ‘heard’, & recieve totally objective feedback . . .
even with strangers who might read this & not even care - but thats ok - bc I don’t know them so I don’t care if they don’t care, lol

I do very much appreciate this forum.

I do journal & it is helpful.
But reading other people’s stuff here - I realize - sometimes people just want to vent about how their body isn’t cooperating. Just need to be heard. Maybe to get a little feedback - especially w/strangers who aren’t like family/friends who scold, or act bossy about your health, or rave about THEIR fav doctor, which is the same dr another friend says STAY AWAY FROM! Or worse, some friends or family who dont even care - so ultimately you learn to just NEVER share with any human being what you’re dealing with physically.