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Has anyone with a similar experience as me been diagnosed with MS?

Three years ago I started getting some strange symptoms. The first symptoms I experienced were dizziness, bladder urgency and incontinence and headaches in my left temple area that would occasionally cause numbness and tingling in that side of my face.

Several more lesions revealed



At that time I was referred to a neurologist and had an MRI of my brain. The MRI showed a lesion and my neurologist told me it was typical in with what they see in people with MS, so she ordered an MRI of my c-spine and t-spine. Those came back negative. She told me at that time to follow up in a year. The following year I had another MRI of my brain and they found several more lesions on my brain. I was told by my neurologist at the time that they had used a more powerful MRI machine this time so she was unsure if they had been there during the first MRI or if they were new.

Awaiting a follow-up MRI



I left her office frustrated and without answers and still experiencing symptoms. I’m scheduled for my follow-up MRI for my brain and t-spine next Thursday but I’ve had to cancel it twice now because I’m currently dealing with vertigo and I cannot lay on my back. I’m hoping by next week I’ll be able to go through with it.

Current symptoms



I’m currently experiencing the following symptoms: dizziness and vertigo, bladder incontinence (had bowel incontinence during my last “flare up”), fatigue (needing to lay down after simple tasks, showering, cooking, cleaning, grocery shopping), headache in both temple areas, joint pain, pain in upper back and chest like a tight squeezing pain, vibration sensation in my chest, muscle spasms and cramps in legs, muscle stiffness, blurry vision (often see straight lines as blurry during flair ups) pain in eyes. I see flashing lights when I close my eyes sometimes. I get pain behind my eyes. Sometimes the “world” appears to be moving even when I’m perfectly still. Sometimes looking at walls they appear to move. Heat intolerance and word finding difficulties with specific words relating to an object (will say the wrong word for the object repetitively until the right word comes out). Feeling like my body is buzzing, spasms in feet, pain in left hamstring with spasm/twitching.

I’m sorry this is so long but I’m wondering if anyone else has experienced similar symptoms. I’m also wondering how long it took to get a diagnosis? I’m so tired of feeling this way and not having any answers. It gets depressing and is so hard to explain to others how I’m feeling because they don’t understand. I don’t have a diagnosis so they don’t get it.

  1. HI charfit! It sounds like you are experiencing a plethora of symptoms! While I know many of our members have experienced similar symptoms to yours, I don't want to speak for them. I hope they see your post and share their thoughts on this.

    I do hope you are able to get that follow up MRI soon. As far as diagnosing MS, physicians generally use a battery of tests to reach a firm diagnosis, which you can read more about here -- https://multiplesclerosis.net/diagnosis/tools-your-doctor-will-use-to-make-a-diagnosis/. An MRI is an important part of the diagnosing process, but is not the only test used.

    Unfortunately, many of our members have had a long road to proper diagnosis. That said, I know that a few of our members were diagnosed relatively quickly. It really seems to depend on many factors, including which symptoms are presenting, physician knowledge, accessibility to specialized physicians, etc. I do hope that whatever you are dealing with, you get a proper diagnosis AND treatment very soon!

    I also hope you get a reprieve from all those symptoms.

    Best of luck and please keep us posted, if you feel comfortable doing so.

    Best, Erin, MultipleSclerosis.net Team Member.

    1. Thank you so much for your response!

  2. Hi charfit! Sorry to hear of your symptoms. I have had some experience with dizziness and vertigo (https://multiplesclerosis.net/living-with-ms/vertigo-experience/), it's truly awful. I've had pretty much every one of your symptoms too. Getting diagnosed can be difficult for so many, getting an MRI is critical to that process and you may want to explain your problems to your doctor, they may be able to give you something to help, to at least get you through the MRI (the anti-vomit drug Zofran can be especially helpful). Aside from that, remember to advocate for yourself. If your doctor isn't helping or isn't helping fast enough, it's OK to look for a new one. Many people end up not getting a diagnosis quick enough because they don't seek a better doctor soon enough. Good luck, I hope you get through this quickly!

    1. Thank you for your response! I was able to finally get in for my brain MRI and it showed that a couple of my lesions were minimally larger than my MRI in 2017 however, they considered this essentially unchanged. I now have to go in for an MRI of my c-spine and a lumbar puncture. I’m really scared to have the lumbar puncture done. Hopefully I get answers soon. It’s hard having so many unexplained symptoms and feeling so miserable at times and not knowing what’s going on.

  3. Hi Charfit. Early after diagnosis I had vertigo. I was miserable. The world was constantly spinning. I had bad issues with my bowels. Out of no where I could not control my bowels and more concerning I did not feel the need to go. The first bowel mishap occurred while around my children. They thought it was funny. I cried.

    I had problems getting an MRI due to spasms and vertigo. In the end I was strapped into place. That helped some. I also go for the MRI tired it helps me relax.

    I saw someone mention be your own advocate. Please do so. I wish you the best
    Char

    1. Thank you so much for your response. Bladder and bowel issues are the worst! So embarrassing! Currently, my vertigo is under control after 1 1/2 months of dealing with it. Very thankful for that.

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