My journey to MS diagnosis

[anaishunter]

As a newbie, Just wanted to share my journey to n MS diagnosis. As this not-so-pleasant diagnosis emerged, along came fear, anxiety, a thousand questions, denial, anger, and a bunch of other emotions that I wish I could have tamed better. 6 months later it all now seems like they were mostly unnecessary.

- Early Jan: started to experience double vision. It was easy to rule out a stroke from what I could read on the internet. My ophthalmologist sent me right away to see a neurologist for the eyes. She seemed concerned and insisted that I needed to get the first available appointment.

- Early February: The neurologist immediately pinpointed a sixth nerve palsy which he said is no big deal. He diagnoses people with this every day. The only wrinkle is that they’re typically in their 70s (I’m 52). So he sent me to get an MRI of the brain focused on the optic nerve.

- End of February: 1st MRI. The report clears up the optic nerve but reports a few spots in various areas of the brain.

- March 1st: Double vision is gone.

- End of March: follow-up with the neurologist. He mentions that the (many) spots on the MRI could just be regular aging but recommends that I clear this up with a brain neurologist (he only focuses on the optic nerve).

- Early April: The brain neurologist takes me through a full set of tests, walking, reflexes… I’m not 100% on left leg but I’ve never been since I badly broke it 20+ years ago. He does not say anything (and I’m not asking) but sends me for a full MRI. (Frankly, I was so busy at work at that time that I scheduled appointments mechanically without thinking much.)

- End of April: This is where it all turns sour. MRI results come back with many (12+) lesions on the brain and spinal cord, some active. The report clearly states “consistent with ms”. The neuro calls me the same day to see me right away and sends me right away to an ms specialist.

From there on, the only thought in my mind was ms. Of course, I started to have all possible symptoms – tingling, memory loss, etc. Everything I did or said, every movement was viewed through the lens of ms. I was so self-aware that I tripped a lot more, I forgot words, etc… It did not help that this second MRI made me feel incredibly uncomfortable, nauseous, buzzing in the ears all the time.

There’s no doubt in my mind that after this full MRI, I had some mild ms symptoms that I had never felt before. I spent hours in the following weeks searching for ms on the internet. Every day brought new questions, with every possible answer you desire to find on the Internet. Lots of contradictions, no consistent answers. Should I tell my friends, my family, work? How many years w/o disability would I have, when would I lose my cognitive abilities? What was more important: cognitive or motor issues? What was worse, spinal or brain lesions? I had both… I could easily list 300+ questions.

In parallel, many of the blood tests ordered came back – all normal. All results perfectly in the middle of the acceptable range. My only hope (welcome to denial) is that the diagnosis was all wrong, the doctors were missing something. I was just aging maybe a little bit faster than expected.

- Mid-May: The ms specialist was incredibly nice and spent almost 2 hours discussing next steps and treatment options. Of course, there would be more tests before an actual decision. It was clear to me that the treatment would either be nothing (and diet) or Ocrevus. The price tag also created a big dilemma for me. How could I spend so much on a treatment while I did not feel sick?

- End of June: Another round of MRI later (20+ lesions with new ones), spinal tab consistent with ms, vaccine shots done, coverage approved by insurance, and the prescription was placed. It was 2 months since the official diagnosis and I could not wait any longer for a treatment to start. By then I was done with all contradictions I could read on the internet and only care for what my neuro had to say. I trust him. His answers just state the facts, and if the answer is not known, he also says so.

I’ve paid more attention to what I eat in the past 2 months. As I started to exercise more, I feel better and have more energy. My only focus now is to find the positive out of this diagnosis: paying attention to my body, taking care of myself, managing my stress better, and caring more for the people around me.

I feel fortunate that ms has not (yet) taken over my life.

My resolution is not to make it a new normal, but a better normal.

[KC0808]

You have a fantastic attitude!! I wish you nothing but the best. Staying positive can be difficult with MS so if you ever need a peptalk this is the place to be.

Take Care of You

KC

[greaterexp]

Thank you for sharing about your experiences during the diagnosis phase. Though we all have our own stories, and though they vary quite a bit, we share the same feelings many times.

When my diagnosis was beginning to set it, I wrote myself a letter. I hoped I would read it often to remind myself of my plan of action. How would I choose to live with this? As a former nurse, I had plenty of opportunities to witness reactions to chronic illness. Some people became angry and bitter, lashing at those who loved them and tried to help them. Others dealt with it with grace and deep appreciation for whatever abilities they had and appreciation for those who loved them. I didn’t want to forget that my new needs did not negate the needs of my family.

The amazing people here gave me a safe place to vent and ask questions, and they encouraged and supported me in so many ways.

Thank you for joining in to offer your perspectives. I hope you get the same support I always feel here.

[bxrmom]

Welcome to this wonderful group anaishunter Thank you for sharing your story with us. So many of us are in denial when we first get the diagnosis of MS. Look forward to getting to know you.

Jessie

[Jazzyinco]

A very warm welcome to our Mser warrior family here, & thanks for sharing your story, yep we all different 1's but about the same feelings. U will get the awesome support & great knowlwdgable advice here as always. Love does conquer all! & support from others that reallyy know what we really n thru helps so much. So, again welcome.💜💪💪💝😍😉😻😸🐾---Jazzyinco

[RoseySawyer]

Welcome! ❤🌷

[scooterjon58]

Hi Anaish,

I have a MS blog at scooterjon58.com. I've had MS for 27+ years. I've learned alot about MS and myself. I wish you good luck going forward.

Scooterjon

[wiesonicht]

Late to the post, but new to the party. Blurred vision and red desaturation started back in July and have my post-MRI follow up with the Neuro next week. Have found the fog, numbness and tingles, and have scrutinized my gait and word choice incessantly. I know it can't make things better for you, but I do appreciate reading this here and knowing I am not alone in this weird and strange progression.

I've already started cleaning up my diet, meditating, and trying to get into yoga. But I must ask-- you're about 6 months ahead of my calendar according to what I can see. Anything you wish you would have done/asked/checked (or were glad you did) upon that first post-MRI trip to the neuro? Any resources that have helped in these first few months?

[anaishunter in reply to wiesonicht]

Hi wiesonicht - welcome to the group. You'll find good and practical answers on this forum from folks who have been on a similar (or slightly similar) path before.

I wish I had been able to quiet the panic that came out of the MRI and diagnosis. I wanted to hear from someone who had been there before that I would be ok, that the disease would not change my life.

So here it is: MS has changed my life but not nearly as much as I expected. And many good things came out of it too.

You're already taking a lot of the right steps - work with a good neuro, diet, exercise,...

Take your time to learn and get answers to your questions. There's no need to panic.

Be ready for it to take a couple of months for everything to get in place, tell your family, friends, find the right support. In the first 2 months, I was so self-aware that I would have worse symptoms (forgotten words,...). Be patient, it will go away.

Before I get to the neuro appt, I sort out my list of questions and ask the ones I can't find answers to. I'm also fully aware that he won't have answers to many questions. Until research proves or disprove something don't expect doctors to make clear statements. On Ocrevus, for example, he doesn't venture beyond saying "you should not have new lesions." No more, not less. and I respect that.

Here is where I am at 6 months after diagnosis and 4 months into Ocrevus treatment:

- slightly better in general

- fatigue is under control - I no longer have to spend Sundays (and sometimes Saturdays) in bed to go through my week (or recuperate from the work week). I no longer need to sleep 12 hours per day.

- I have less anxiety (diet?)

- the electricity in my knee is at the same level but not there as often

- very mild tingling in foot is gone

- heat is not impacting me anymore

Resources:

- Diet: msdietforlife.com/. Lots of discussions on food on this forum. This site is what resonated to me. Practical, feasible, not overwhelming.

- Online resources: this forum. I've very much stopped reading anything else on the internet other than this forum and the MSAA. And research published by my group of neuros.

What I would do differently?

- take 3 months off the job right away to take care of myself (now I can't because I've lost my job and I need to find another one). This is what I personally needed.

- be more aggressive with exercising. Once again, I could not because my job was demanding.

There could be a lot more to say. I'm sorry about your diagnosis. But be hopeful. There's much better treatment now that 10 years ago, and a lot of progress is being made.

[wiesonicht in reply to anaishunter]

Anaishunter--

Thank you. Thank you so much for taking your time to respond so kindly and thoroughly! The panic is real, intense, and I'm desperately trying to stop it from eating my life. I've been poking around and generally overwhelmed with information and your summary here is supremely useful, and gives me some hope! I'll be crossing my fingers for you with the Ocrevus, the job, etc!

[anaishunter in reply to wiesonicht]

Yes, the panic can be real - information overload, feeling that I had to re-plan my life to be a disabled person and more. Some days, I counted 100+ questions obsessing me.

It will pass and you will be ok.

You will get comfortable using the tools available - treatment, support group, diet, exercise, whatever else is available to you.

One tool I use to get rid of "obsessions" (in this case MS) is to replace it by something else. Find a good book (fantasy in my case), dig into the Yoga practice, learn a new language. Replace your obsession of finding anything and everything about Yoga with something else exciting (if you can).