Hi,
I’m new here. Honestly, all of my symptoms are consistent with MS and I’m awaiting MRI. My most recent flare was last month and before that was 3.5 years ago after my daughter was born. Previously, MRI and LP normal. Awaiting MRIs for recent flare. How many years did it take to get an MS diagnosis from your very first symptom?
Hi and welcome, I am sorry I can’t help you as I have PPMS and so I don’t have relapses but I am sure someone will help you, blessings Jimeka 😊
Hi DoodleBug. As many folks on here can tell you, getting a definite M.S. diagnosis can be a long and frustrating process. Doctors will tell you that M.S. symptoms can "mimic" lots of other causes, and many times a doctor will attempt to rule things out before declaring a M.S. diagnosis. I had symptoms for four or five years before I got a definite diagnosis. My first brain MRI did show lesions, but my neurologist at the time wanted to wait 12 months for a second MRI to be sure. After that I had a spinal tap which confirmed that it was, indeed, M.S. Hang in there, do not give up. It's good that you are getting another MRI and LP. If your tests come back positive, your next step is to research the many DMT's out there and discuss a treatment plan with your doctor. Best of luck to you and please keep us posted.
About 15yrs.
I was diagnosed within a year after I started to experience Lhermitte's Sign & MS hug.
A teacher I had said it sounded like MS (I thought -nah, that's a neck injury)
I then went to a chiropractor who treated me for a bit then told me I had MS.
I went to a neurologist who then sent me for an MRI & spinal tap and was told that I have MS.
At that point I was not surprised.
I hope you get answers soon.
I think they've gotten better about diagnosing these days, so I won't answer your question. Just don't give up.
They can do blood work to rule out MS mimicers. But it isn't diagnosis
My symptoms started in my late teens. I was finally diagnosed when I turned 50.
Doodlebug528, welcome! I had a spot on an MRI 6-7 years ago. But no one suspected M.S. back then. Once I started walking funny years later, it took about 7 weeks, after a lumbar puncture confirmed what I already knew. I hope you gets a clear answer soon. It can be scary, but life does go on. Just differently.
Hi doodlebug - what are your symptoms? I ask because I, too, have had strange symptoms since last Feb. though the electric shock sensation I get on my chest has happened for over 10 years (just worse and more frequent this past year). I also get pinching sensation on my skin that migrates and is worse at night (neuropathy), itchy scalp, sensation of my calves falling asleep. I have a long list! I did have an abnormal spine MRI (an abnormal cord signal), but the neurologist conferred with her colleagues and they don't think it's the cause of what I'm experiencing (and that it might be a wide spinal canal). I did have white spots on my brain MRI but not MS. Lumbar puncture was normal as was all the blood work done. I am at a loss because it's scary not knowing what's causing this and the shocks on my chest are extremely painful. Anyway, I would like to hear what you've found out - I hope you have an answer and that it's treatable.
well I had a flare of symptoms after I went to Disney World that I’m thinking was secondary to overexertion.
Symptoms:
Numbness and tingling in left leg
Legs would at times feel so heavy like sandbags
Spasticity in neck and left leg—still on Baclofen 3x a day for this
Pain along my spine in neck and between shoulder blades
Intermittent blurry vision in left eye
Ringing in ears
Headaches
Fatigue
Random muscle twitching in face and body
Dizziness
Brain fog
Weakness in left hand
My symptoms increase with stress or overexertion
After 2 rounds of oral Prednisone tapers, my symptoms calmed down but I still have persistent deep aching in neck that leads to headaches almost every day at this point.
Waiting on my doc to call me to schedule mris of brain, cervical spine and thoracic spine. I had an abnormal brain MRI 2 years ago but it was not specific for anything…just abnormal…
My last flare prior to this one was after my daughter was born in 2018 and symptoms were all very similar. Flare lasted for many months and I was on short term disability for 8 months.
They currently treat me for possible CIDP with IVIG infusions but that was never a definitive diagnosis so they are always looking for MS and with my flares of symptoms I think it’s more consistent with MS.
Interesting that the Prednisone helped...we have many similar symptoms. Because nothing is showing up in my tests, my doctor says it's not MS. I realize they can't diagnose unless things start showing up, but it is so frustrating having all these severe symptoms and not knowing what is causing it. My doctor also said that usually symptoms are on one side only. I have tingles and numbness on and off on both sides - feet and hands - but things happen more on my right side. I hope they can get to the bottom of it quickly for you! Please keep us posted!
Pardon my language, but the doctors can go pound salt. I will never wish MS on anyone, but my symptoms have always alternated sides or been on both at the same time. They were also consistent for years. It took many decades for a diagnosis because my tests were continuously negative until suddenly they weren't.
Too little is known about MS, and there are too many doctors spouting things that they know nothing about. Bottom line: Just don't give up. If your current doctors aren't willing to keep searching for an answer, find some new ones. My MRI's spanned 16 years before they finally saw lesions.
Hi everyone varies my husbands diagnosis was fairly immediate but sometimes they do have to wait for another flare up to see if it is MS all the best
It took roughly a year just to get a CIS diagnosis, just because my GP at the time didn't believe me when I started having simple partial seizures during my sleep. I only knew I had them because they'd wake me up with a strong sense of deja vous. Bit of a story just to actually see a neurologist. It took another year to get my clinically definite diagnosis of RRMS. So, that's 2 years in total.
Hello,I had neurological symptoms when I was in college. They were so infrequent that it was easy to blame it on something I did or didn't do. In 2015, I was pregnant with my daughter and my right leg went numb. It lasted for a number of days, then went away on it's own. I was pregnant so they could not do any testing at the time. I began to have neurological symptoms again after a miscarriage at the end of 2018, and they progressively got worse and became constant. After my first mri, for what was thought to be a disc problem in my neck, they found a lesion in 2020. From that time on, lots of blood work and tests to rule out anything else it could be. Diagnosed in June of 2021, after mri which did end up showing a lesion on my brain( first one on the brain), I did have the o bands with lumbar puncture, but one lesion with bands was not enough for diagnosis, even though I had a lot of chronic symptoms at that time. Had I seen the neuro I have now, he would have started treatment for CIS. The one I had did not do that.
If you have any eye related symptoms, it is helpful to see an ophthalmologist. I found out I had optic neuritis at some point, but, never knew I had it as I could not recall any symptoms of having it in the past. Not common, but can happen.
It takes awhile sometimes. I think it depends on when symptoms start and what testing they do to figure things out. I have had a long journey with all the symptoms and testing. Everyone is different with how symptoms present, and number of lesions present.
Some people with few areas of damage have a lot of symptoms, and some can have a lot of lesions with little to no symptoms. It can also go the other way too.
It can be frustrating at times, but, stick with it. Sometimes, it takes time to confirm the diagnosis.
Similar story here with not getting a diagnosis. I initially sought neurology in 2017 for what I felt was carpal tunnel syndrome, but the neurosurgeon's feedback after an EMG and c-spine MRI was only that I needed a neurologist, not a neurosurgeon.
So I did that, and we ran through the checklist: bloodwork, symptoms, scans, etc. I've had vision problems since I was 3, so I couldn't reliably say my vision was suddenly bad because of this, either. I had a family history, abnormal C-spine MRI, and varied symptoms (that I can clearly recall) starting in early 2017, BUT normal brain MRI in early 2018. LP in 2019 that was also abnormal, but I still couldn't technically be diagnosed with MS.
Thankfully the advise from MS-specialized neurologists in the office was aggressive treatment and I was started then on Ocrevus. I responded to shockingly well and basically helped diagnose me in 2019 (along with a different scan eventually showing an abnormality also). CIS wasn't an available diagnosis until 2020, but had it been years prior I am confident I would have received that diagnosis.
All I can recommend is keep track of your symptoms and communicate with your doctors. Do the scans and tests. Bigger question, if they don't think it's MS then what DO they think it is?
It only took a month, once I found a good neurologist and I advocated very hard for myself. Unfortunately, he traced my symptoms back 20 yrs. So 20yrs of being misdiagnosed by multiple other doctors. Fight for care DoodleBug. Don’t accept vague answers and keep a journal. I just had my first visit with my MS Specialist. She ‘gave me the floor’ so I referred to my journal with my list of symptoms. YT videos, primarily Dr Boster and Dr Thrower, have fueled my knowledge of MS, providing the basics for my questions. Now, two decades after the first Lhermitte’s sign, I’m being screened for Mayzent. Good luck… fight hard…. Don’t give up!
1/2 year. An eye Doctor decided that me eyes were fine when I had some odd visual issues. The eye Doctor thought that most likely cause was a brain issue - MS. A MRI and a Spinal Tap were done to verify.
Hi there, I was diagnosed at 55. My symptoms started with drop foot and Lhermitte's syndrome. It took about a year before I was referred to a neurologist and I had a MRI and it was evident from spots on my brain and a lesion on my spine. I agree with others, you really need to advocate for yourself. My MD started down the wrong rabbit hole with my symptoms and didn't refer me to the neurologist until after I asked if she thought it could be MS. I don't have flares, my drop foot and other issues are consistent, slow progression over the years. I just started my Ocrevus infusions and so far so good. No side effects. Good luck!!
no standard I think. Depends a lot on your Dr and your symptoms. I have noticed that it is difficult for doctors, so they try to rule out all possibilities so it takes a while. Hang in there and start cleaning up your lifestyle this willl not hurt whatever the outcome maybe, and good luck.
Possible MS diagnosis to come?
New to this community of Fighters!
Age at Diagnosis
New to MS and learning.
