Full disclosure – this is a revamped version of my very first post. I took it down for a while, for various reasons. I was unsure of the purpose, I was freshly diagnosed and confused, and mostly I was very self-conscious. I’ve edited a few parts with more clarity now that I have another year of perspective under my belt. I’ve also had another year to hear stories from other autoimmune warriors who suffered way more than I did. It makes me so angry that our healthcare system is systematically failing us. Not to mention, all the times my Mom and I have talked about how important this aspect of my journey was. So, this is for you, Momma.
Looking back, it seems so obvious. Those years of symptoms, building to two huge flares, the last of which led to my diagnosis. Hindsight is always 20/20. But first time around, it felt like it was so hard to get someone to listen. I had no idea at the time, but at the very end, I ran into some extraordinarily smart doctors. They knew how the system worked, and made it work for me. I realize now, especially a year later, that this is NOT the case for most people.
It was April of 2018. At the time, all I knew was that it seemed like I was in a flare f o r e v e r. I wanted to avoid going to the hospital at all costs, but I think I knew from the get-go that the ER was inevitable. I was waking up every day with progressively worse symptoms.
So, to the first doctor I went; I was walking funny, like I had a limp sometimes I couldn’t control. I was experiencing numbness, back pain, and vertigo with increasing frequency. I hadn’t yet quit my job, but I knew the end was near. At this doctor appointment, unlike the previous ones, I didn’t voice my ideas, just symptoms. I wanted my suspicions confirmed, and what you ask for, you will receive, in this case at least.
After the exam and routine questions, she had just one question. “Do you have a family history of MS?” And my jaw damn near hit the floor. Quite literally, considering I almost toppled over getting off the exam table.
After I dealt with my vertical impairment, and was finally seated, I was absolutely s h o o k.
My mind was racing, but I composed myself quickly enough. All I could say was, “Well, my Dad had a lot of really weird symptoms. They started when he was in his 20’s too. He saw a lot of doctors, got a lot of tests and treatments, but he never got a conclusive diagnosis before he died.” Once we’d gone over his long list of symptoms, things moved quickly – she let me know a nurse would be in with a referral to a neurologist as well as a prescription for a pack of steroids. She also told me that I had to go to the ER if it got any worse.
But the biggest thing she did for me was say, “Well, they don’t need to know he died before getting diagnosed.” as she noted a family history of ms in my chart.
I called the neurologist she referred me to, the steroids helped for awhile, but the earliest appointment was months away. So I waited.
Fast forward a couple weeks, and I’m back at the Dr, but I’m at a 24 hour urgent care center this time; not for just worsened symptoms, but new ones too.
Here, I’m gonna give you a warning, the following may not be suitable for some, but this is kinda normal stuff for MS’ers so bare with me. It serves a purpose.
Like I said, I was at the urgent care center with new and worsened symptoms. I went there mainly for a referral to the ER. All of my symptoms were worse. My entire right leg was numb, and I couldn’t walk without my cane. The numbness was starting to creep up other places too. The vertigo and back pain was horrible, and I could barely move my head from side to side. Worst of all was the constant sensation that I was peeing on myself. I think I probably checked myself five times an hour that day, and I never actually did, but I swear it felt like I was all. day. long.
I tell you that, to tell you this.
When I got to the urgent care center, the doctor just smiled at me sadly as I explained why I was there. She agreed I needed to go to the ER immediately. Soon enough, she started documenting everything for the referral. Including a notation of incontinence. Even though *technically I wasn’t.
She told me something like, “When you get to the hospital, make sure you mention this and the family history. You’ll be ok, but you need an MRI kiddo.”
The two doctors I saw pre-diagnosis, knew two things. 1) That I was in bad shape and needed help they couldn’t give me immediately, and 2) That the system doesn’t work as quickly as I needed it too. They knew there wasn’t much they could do, but they did all they could. They knew the testing I’d undergo would rule out everything else before ruling in MS.
The fact that I had two Dr’s so well versed in auto-immune diseases are such bad odds, even Bagman wouldn’t have bet.
(if you don’t get that, you need some HP in your life ASAP)
After three nights in the hospital, countless blood tests, two MRI’s, and three bags of steroids, I left the hospital with two things on my mind – the fact that I could walk without a cane, and that I’d been right. There really was something wrong.
After diving into this community head first at the advice of my wise counselor, one thing stood out to me amongst the others; all of us have to be our own advocates. If you go to the doctor or your parents with weird symptoms, and they try to brush you off, you can’t let them. You have to find someone who will take you seriously, and will take the time to figure out what is wrong. Get more blood tests. Get another opinion. Your health, your life, your future seriously depends on it. I’m not trying to be dramatic, but I can’t stress that enough. If you’re having weird symptoms, don’t ignore them.
A lot of us want to bury our head in the sand, so to speak. We think it’s easier to live our lives “normally” rather than face the truth. This goes for ANY health issues you could be facing. However, if you don’t take care of your wellness, you’ll be forced to take care of an illness. Simple as that.
If I could do back and do anything differently in this situation, I’d go to the hospital sooner. I pushed it off for a long as I could, and I regret it very much now. Not because I have any permanent issues from my flare, although I could have if I’d waited much longer. The reason is because my life is actually better since my diagnosis.
No, it’s not fun to have a chronic illness – I deal with stuff on a daily basis because of MS…the cool thing is, I was already dealing with it, but now I’m slightly medicated so none of my symptoms are as bothersome. I’m also much smarter, because now all the weird stuff has a name, and I have a whole lot more resources available to me.
If you’re newly diagnosed, or working towards it, check out the National MS Society and MS Focus. They have so much great information and resources. If you’re on a DMD, they all have their own dedicated support group. There are also a ton of other great blogs about living with MS and chronic disease in general. Three of my favorites are BBH, Tripping on Air, and The Sparkled Life. There are books, protocols, and podcasts dedicated to it, too. There are tons of information, support, and help available if you search for it!
Have something about your diagnosis you’d like to share? Comment below! Or, maybe you have questions – I can’t promise I have the answer, but I promise I’ll help the best I can.
I relate to this post SO much. I was diagnosed in 2008 with RRMS, at the age of eighteen. From then up until right now, I had a handful of episodes, each with symptoms that lasted a week and completely disappeared.
I spent the majority of my 20s what I deemed perfectly normal. I never sought out a neurologist, or looked into any kind of treatment for my MS. Just brushed it under the rug, I guess you could say.
Now, I’ve been dealing with the worth flare I have ever had, and it’s stuck around since the middle of February. Started as numbness in my legs, and has moved up to my right arm and hand, and is now affecting my vision. Peripheral double vision can be SUPER disorienting. And this time came with a case of vertigo that had me bed ridden for the first week that it came along.
I have never dealt with vertigo before in my life. I made the decision to start on Tecfidera, and after taking it for a month, I feel like it’s done nothing but make me relapse. Today I made the choice to switch over to Tysabri.
I am hoping and praying that I find some success with the Tysabri. Steroids have helped correct my vision, yet again, but the vertigo is still lingering and it’s kind of hard to function every day like this.
Felt the need to share. We are all different in the aspect of this disease, but I believe we are all the same in our determination to not let it triumph.
As always, thanks for sharing ❤️
Hi Jessica,
I’m so sorry to hear about your ongoing flare issues. Vertigo is definitely disorientating. When I suffered with vertigo, it felt so strange to try to go about my day while the world was constantly spinning around me. I hope you and your Dr get your remaining symptoms cleared up or better managed ASAP.
I’ve been on my DMD, Plegridy, for a little over a year now. I know a few fellow warriors who have been or are currently on one of the T’s. Some have had great success! DMD’s are a lot like MS to me, they’re so unique and individual in how our bodies handle them, none of our disease or bodies react the same. Tysabri sounds nice to me, just because it’s an infusion once a month vs. the biweekly injections I now give myself. I hope you find that it works better for you than Tecifidera!
I quite agree we’re all unique, but facing the same goal of not letting this disease win. I’m so grateful you shared your story with me! Thanks for reaching out.
Last year I started having ringing in my ears, black dots in my vision, constant muscle spasms in my neck, back, and face, numbness and tingling in my head, vibration feeling in my right foot, fatigue, and most recently incontinence. I have tested positive for ANA. Everything I read points to MS but no Physician has mentioned this to me other than my ENT last year when the ringing in my ears started. He ordered an MRI of the brain and it was normal so that thought was dropped. Could I still have MS with a normal MRI of the brain last year? I’m just so frustrated and want answers.
Hello, I have heard of people being diagnosed with only spinal lesions, but I’m no healthcare expert, so I’m not sure what kind of criteria other than lesions or a spinal tap can confirm MS. I’ve also heard of other diseases mimicking MS, but not necessarily to the extent you describe, either. I’m sorry you’re struggling and I’m not much help, but I hope you get some answers and relief soon.
Thank you for allowing space to tell your MS story. My daughter spent the last few years being told by the medical profession that it was stress. She was convinced 2 years ago that the facial numbness , leg numbenss and back pain was MS. The MRI was negative . Being an occupational therapist she had some contact with MS. She continued to experience symptoms but was told again and again that it was stress. Thank goodness that a routine eye exam led us to an eye neurologicalist who thought to do another MRI to find out what was causing the skewed vision. MS was the diagnosis. She has tried two medications without success the side effects to difficult . In the middle of a flare and waiting to see if he disapates enough that she can try something else. Unfortunately no innusurance so we must wait to see what the government assistance program will cover . Thank goodness for that.
The medical community must do better. My daughter spent at least 4 years being told that it was stress. Facial and leg numbness and back pain. She did have an MRI which came back negative . The symptoms continued and progressed . She was sure it was MS as she was studying to be an occupational therapist and had some experience with MS clients . Finally after university during a routine eye exam of her complaining about skewed vision she went to a eye neurologist . A new MRI showed leisons in spine and brain. Right now in a terrible flare with anxiety and balance , dizziness and headache . Trying to survive and stay positive is difficult . Trying to find the right medicine as two have had terrible side effects for her. Thank you for allowing me to tell her story
I’m so thankful you told her story here. The medical community MUST do better. It’s unfathomable what we endure day in and day out, just because we suffer from a less than obvious disease. I’m sorry she went through all of that. It is so difficult to stay positive when the world seems like it’s fighting against you – just know you aren’t alone, your daughter is not alone, and although it does NOT make it any better, we’re out here struggling right along with her. Hopefully one day autoimmune disease education will be more mainstream, and the next generation will not have to suffer like we have.
What MRI did you get? I can’t get a diagnosis to save my life. My Brian Mri came back normal but I have so many of the MS symptoms
Hello, I got one of both my brain and spine the first time around, with and without contrast. I’m sorry you’re struggling to get answers, it happens to too many of us. Hope you get some soon!
Thank you for blogging! I am 19 and was diagnosed in september! Thank you for helping us out in understanding our MS journey!
Bella
Hi Bella, and welcome! I’m glad you’re here. Getting diagnosed was one of the most pivotal moments in my life, mostly for the better. I hope it is for you, too! It can sometimes be scary, but we’re never aren’t alone on our journey.
I have had so many doctors in the past, that have diagnosed me with fibromyalgia, one said I had had a small stroke, another said it was just an ear infection. There have been so many Doctors, because they either leave practice, move out of state, or switch from GP to Hospital practice. There has been no consistency with my medical history. Starting in my 20’s and having no feeling in my legs and falling down when I got out of bed. At one point having to drag myself ino the nursery to check on my baby that was crying. All through the years, I feel I have experienced symptoms for years! Fast forward, I have slowy lost 95% of vision in my left eye. MRI’s, Cat scans, and no one knows what has caused it. Doctors and Eye Doctors have said, usually that is usually a sign of MS. But here is the kicker. They tell me that I am too old to develop MS and at my age, and that even though I might have ms type symptoms, it would not have progressed so slowly. So ..I am now 68..I have asked my Doctor to refer me to a Neurologist, and even asked for the spinal tap….this was weeks ago. It’s not that I think there is any treatments that will help….I just want a final determination! I had reached out to another group and had someone say, scathingly, that there is no way that MLS would have progressed that slowly! I felt like she was telling me I didn’t belong in the “club” I just want to know…..I dont “want” a positive diagnosis…but would rather have a reason for all the weirdness.
Hi Vickie, I really understand your last sentiment. It’s not that you want that diagnosis, just an answer to all the questions/issues that have occurred. It shouldn’t shock me anymore, but the realities of the way people with chronic illness is treated in the medical community still devastates me sometimes. I’m sorry you’ve gone your life without the answers you deserve, and the people in the group you encountered sound like the worst. Sending you lots of good vibes, and hope that you will finally get a reason!!
Hi Vicki,
I read your story and to write to you!
My story started with foot numbness a year and a half ago, working full time and no insurance:
I just dealt with it——
Fast forward to November 2019—
Still working full time, no insurance—I had a bout of flu on my weekend. Monday morning, I was over the flu but weak and whole body numbness, barely could walk to the bathroom and feed myself (I live alone). Ended up having to quit my job at age 53….
That was first week of November—had to get on Medicaid thru the state!
A friend took me to the ER, first week of December, everything was normal, they said!
Two weeks later I returned to the doctor, same doctor that saw me in the ER, I told it is getting worse, not better!
(Small town Montana)
He ordered a mri, took two more weeks of waiting——I got the results—-he said possible MS and scheduled me to see a Neurologist, had to wait another month and a half. Meanwhile waiting the doctor ordered another mri of my neck —and then told me I need to see a Neurosurgeon.
Fast forward to March 10th, the closest Neurologist is 250 miles away (thank goodness, for a senior center shuttle to drive me)
I studied MS, while waiting for my appointment, I had a whole list of questions to ask the Neurologist, he came in the room and said…”you have bigger problems, than MS. You need to see the Neurosurgeon asap “
(I wanted a spinal tap, to rule out, MS)
He told me no—
He made an appointment for me the next day with a Neurosurgeon. (I didn’t have money, a vehicle, a toothbrush—-they let me spend the night in an annex, off the hospital)!!!
Next day saw the surgeon, who told me I need spinal fusion surgery immediately!!’
That was March 11th, scheduled me for surgery for March 24th!!!
And then Coronavirus hits!
All surgeries cancelled, I ended up calling him the first week of April and said I am getting worse, please do the surgery. April 17th the surgery was done——C4,5,6 (neck fusion).
I spent 2 weeks in the hospital after that!
Again flashback to the mri’s, that showed lesions in brain and neck also!
I asked both the Neurologist and Neurosurgeon about the MS or a spinal tap? They blew me off!
So now it has been over three months and I still have numbness from the neck down, have to use a walker. I have to stay unemployed because I can barely function at home. I have always been employed and took care of myself, now I am on Medicaid and food stamps, at risk of being homeless.
NOT GOOD!
I have been in contact (try to via phone)
I have applied for disability, but with The Virus,
Everything is shut down!
I guess, all I can say—I empathize with you and will say a prayer for you 🙏🙏🙏👌.
Best wishes.
Hi Shelley, just wanted o pop int and say thank you for your comment. I am sending you so many good vibes that your situation gets turned around!!
I cringe every time I read one of these stories. The system is so terrible. I have been dealing with symptoms now for almost 2 years and still do not have a diagnosis. I have been through 5 neurologists (some of which brushed me off as having depression). Sure I am depressed! I feel terrible and nothing helps! It started with vertigo so severe I nearly ended up in a car accident. It ended my law enforcement career. It progressed to pain in my right arm, then a tremor that was sometimes bad enough I couldn’t hold a fork very well. Then the numbness started. First my hands, then my feet. I have had 3 brain and cervical spine MRIs and all have been clean except for T2 hyperintensities from the migraines I also suddenly started experiencing. I have wicked heat intolerance now that causes flares of numbness in my face, hands, and down my shins. And the fatigue is awful! I have never felt so exhausted upon waking in my life. But the doctors say there is nothing wrong because my MRIs are negative, my EMG was clean, and my ANA was only borderline.
It has been a struggle, and honestly I gave up chasing a diagnosis in order to get the 2 to 3 brainstem migraines a week under control. The good thing is that one of the drugs I am on for that is also used for pain in MS patients and it has quieted the pain in my arms and legs quite well. That alone should be a red flag to my doctors!
I am still on my journey to diagnosis and I am convinced it is MS but I will be deeply grateful if it is something that can be fixed instead.
Hi Heather, it can be so frustrating seeing how broken the system is. I can empathize with so many of your comments…I’ll never understand a dr failing t uphold his oath. Why go into medicine just to brush people off? I really hope you get some answers soon, whatever they may be. Just knowing can be calming, sometimes. Sending good vibes your way those migraines back off, too!