I am currently diagnosed with sub-clinical hypothyroidism but have been dealing with a plethora of symptoms that my endocrinologist says are not thyroid related. I have been suspecting MS for a while. I have a CT brain scan scheduled next week due to consistent headaches that are mainly on the front of my head and sometimes behind my right eye. I have eye floaters that have appeared and more visual disturbances like seeing objects move or shadows. I have been struggling more with my sleep and for the last couple months have been having internal vibrations while I’m laying down. I had a head tremor that lasted a week after a really bad headache. I have horrible pins and needles on my hands and i wake up at night and my hands are completely numb. I have moments where I constantly space out and can barely concentrate. I also get the worst chest, rib and shoulder blade pain and was told by my provider that it’s costochondritis. The neurologist did a physical test and all seemed fine but wants to do some images. I feel like since my hypothyroidism diagnosis In jume of 2020 I have been experiencing so many symptoms but none of my doctors seems to know what’s causing it and I’m starting to think I’m a hypochondriac.
What were your first symptoms? - My MSAA Community
What were your first symptoms?
Sorry you have all these symptoms and no diagnosis yet.
I had chest pain that sent me to the ER twice that was eventually diagnosed as possible costochondritis about 15 years before ms symptoms worsened and led to diagnosis.
Yours sounds a lot like the ms hug ?
Wow that’s crazy to have gone so long without a diagnosis. I was prescribed mobic for my costochondritis which doesn’t help much. I sometimes get really bad chest pain when I breath or I’ll even feel like a painful palpitation
Yes, I usually had palpitations along with the chest pain.
Back then my ms symptoms were mild enough that I never paid much attention, until 2014 when they began in earnest and decided to stay.
My first symptom was sudden blurred vision. After seeing an Ophthalmologist who said I was fine but said it could be my depression meds I was on at the time. I argued with him that I had been on them for so long that wasn't it. He finally sent me for a brain MRI which said I had lesions that looked like MS which sent me on my testing journey. My N euro sent me for more testing and my spinal confirmed it.
I was referred to see an ophthalmologist due to my headaches behind my eyes and the sudden floaters I have. I often have peripheral hallucinations I can see a shape or object move. I’ve never had any eye issues and lately they always feel dry and more sensitive. After my check up I was told my eyes looked fine and that’s when I was referred to the neurologist.
My first sx were vision issues (but it was simply that my left eye wasn't moving properly when I was looking down, side to side, etc.). My PCP said it seemed "something was wrong with my brain stem" and to see a neuro to rule out MS. . .Not!
That was more than 28 years ago; I've been self-injecting Avonex for 24 years. When I was first dx, it was still in the "diagnos and adios" phase; I didn't start tx until a flare three years later sent me back to the neuro. Beta was dispensed via lottery in the US back in 1994; by 1997 Avonex hit the US market.
I've had a few mild flares (but a bad bout of ON left central blindness in right eye 2003) but fatigue and cognitive issues caused me to go on SSDI by my mid 40's. I look so good; but we know better, right?
Fortunately, there are many tx options today; it gives us all a bit of a silver lining in this MS cloud. Best of luck to you. . .
First of all, thinking you are a hypochondriac (or dealing with doctors who dismiss you as if you were), is not conducive to finding answers. MS presents in myriad weird ways so my first symptoms wouldn't match yours. But I am curious to know why your medical team hasn't followed the standard protocol for MS diagnosis (MRI, LP, and blood work). If you live in tick country, tick borne diseases should be ruled out (they can cause weird symptoms too). Keep us posted. I wish you well.
I agree. Please ask to be evaluated for MS. I hope it's not MS, but you deserve answers. Please keep us posted.
I agree I think it’s been a struggle to have someone take me serious because I get seen my naval doctors. I’m a service member and their protocol is probably very different from civilian doctors it took me three years to get an MRI for my hip after years of pain and physical therapy that wasn’t helping to finally discover that I have a labrum tear in my right hip that might need surgery.
Most MS patients have problems with balance and/or gait.
Vision, optic neuritis in left eye which sent me to ophthalmologist then MRI which confirmed lesions and MS dx. Numb below waist for about 6 months.
Good luck with dx.
Walking and balancing was my first issues with MS. Sorry you are going thru this. Please get checked out for MS.
My face & tongue was numb on the left side. I had already had a dr appt for that day & asked him if it was coming from my neck. I then felt kind of dumb cuz I knew better than that. I had to study facial nerves in cosmetology, they are cranial nerves. He sent me for an MRI and the whirlwind began. I had several tests plus a spinal that gave the final YES, it's MS. I had 5 bands in my spinal fluid. My neuro's nurse at the time said she had personally never seen that many. I also had 9 active lesions on my brain. I was in a full-blown attack at the time. My neuro immediately put me in the hospital for a steroid drip to help stop the attack. Since it was my first steroid drip he wanted me to be watched closely for any possible problems. I didn't have any in 24 hrs so he let me go home. That was 16 years ago. I have had a lot of the symptoms you are experiencing. Several different diseases mimic MS. It is a very hard disease to diagnose especially if you only have one or two symptoms & no lesions on the brain at the time. Drs like to have at least 3 tests that confirm their suspicions before giving a diagnosis of MS. So be patient. If you don't like the dr or the dr isn't listening to you then I would suggest you find another one, maybe one that is a specialist in MS. In my opinion, it's very important for a dr to listen to you especially about your symptoms. I hope you don't have MS or anything chronic for that matter, but if it is MS it is a disease you can learn to live with, it's not going to kill you as cancer can, you just have to change how you do things in life.
Many of us felt like a hypochondriac before being diagnosed! I have eye floaters that drive me crazy but they are not related to anything else. Hate them as many times it's like looking out a dirty window. (Like now.)
Hopefully they will do an MRI on your head and spine followed by a lumbar puncture (followed by a blood test.) That will help with diagnosis. Let us know how you're doing and what you find out!
I’m sorry to hear that you’ve got all of these symptoms and no diagnosis. My first symptoms for my PPMS were an odd feeling as though bugs were crawling under my skin (torso, back of head and neck), tightening around my torso (ms hug) and I started walking like I was just a bit drunk. I had some brain fog and stopped mid sentence too often to be coincidental.All symptoms started the night my father died...so must have been waiting dormant for extreme stress to ignite them.
I hope you get some answers soon. Not knowing what you’re dealing with is the worst!
Hi how have you been? I've been dealing with some of the things you mentioned and I'm getting a little worried
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