Diagnosis is official

[Pistachio]

I saw the neurologist today. He officially diagnosed me. It's been a long 2 years, let me tell you! He said he thinks I have had MS since 2013 when I had my CIS of ON. Apparently he got on the phone with my ophthalmologist and my infectious disease doctor (treated me for Lyme) and had a discussion between all of them. They all concur that it's probably being going on since 2013. Between the two MRIs and the LP it all adds up to MS.

The good news is that the neuro thinks it's a mild case. He did confirm, however, that I do have some spasticity in my right quad muscle. It has been tight and making me limp. I didn't even mention it to him but he found it upon exam and them watching me walk. It's been bugging me for a while, now. He also said the headaches I have been getting are likely related.

For now we are ruling out DMTs. He thinks my condition does not warrant the risk. We will stay on top of it and reassess. He is setting up another MRI in October - that will be my 3rd in 3 years.

The good thing is my age. I am 50 years old. He said this is good as our immune systems become less active with age. In his words, "Let's try to get you to age 60 in the same shape you are now and I think you'll be good".

At least now I know for sure.

[Seasha]

Welcome to the club that no one really wants to belong to. Regardless, the wait is over!! Very glad to hear that your course has been mild up top this point, Pistachio. Let's hope that continues for many years to come

[pennstater]

Glad you have an answer. Also hope you stay mild, as MS is mild until it is not. I am curious as to the neuro's risk assessment on skipping DMTs. To my knowledge, there is no way to predict disease course. I know that ON as an initial presentation, later agecat disease on set, as well as longer time between first and second relapse are generally considered favorable for MS diseases course, but are no guarantees.

Are you comfortable sharing what the pros were in your risk assessment for skipping DMTs? I went 13 years between 1st and 2nd relapses myself and was considered mild. I was hesitant to go on a DMT, but did. Years later, I actually wish I had gone on one of the more effective treatments, but at the time, I was too scared of side effects.

So my only words of caution to you is to make sure you are comfortable that if you do progress (which I pray you don't), you can assure yourself you made the most educated decision you could at the time when you opted out of DMTs. That is all we can ask of ourselves.

[Jules A]

This is unusual in my humble opinion.
I’m in agreement that it’s only mild until it’s not and unfortunately I haven’t seen data to indicate a reliable way to predict the course of MS.
I’d strongly recommend a second opinion from a MS specialist.

[Marco]

I would get a second opinion from a MS Specialist, if possible. Like the others, the current guidance from the NMSS is to treat as early as possible. It's also becoming more commonplace to treat with more effective medications than ones with lower efficacy.

My personal belief is the best way for you to get to 60, like you are now is to go on therapy.

I wish you well on your journey and hope you push to discover the best plan possible for your benefit.

[Mamabug]

The good thing is my age. I am 50 years old. He said this is good as our immune systems become less active with age. In his words, "Let's try to get you to age 60 in the same shape you are now and I think you'll be good".

...

Getting a dx can often be a positive step, rather than a disappointment. Once you know what is going on, you have more ability to decide how to manage it.

Regarding medication, once you reach age 50, there can be varying opinions. After being on DMT's for 16 years, I went off at age 56 because I believe I am in SPMS and my meds may no longer have been effective for me. But a second opinion is not a bad idea.

I strongly suggest that you read The Wahls Protocol and consider implementing a gluten free, dairy free, low sugar diet and including 6-9 vegetables per day. If I focus on meat (or other proteins) plus fruits and vegetables, I really no longer miss the rest at home. Eating out can work well at most restaurants, too, if I am intentional about how I order. The challenge is when eating in other people's homes, or a community social events. If you must sweeten foods, consider honey, 100% pure maple syrup, or stevia (a natural sweetener). Avoid artificial sweeteners.

Also, take a look at the toxins in your life and environment (ie: is your water filtered, do you use non-toxic personal care products, etc) and work on managing and preventing stress in your life.

Since I began making these changes, my MS has remained stable. You might also want to consider supplementing your care (ie: neuro, PCP, etc) with a functional medicine doctor. Some of these are expensive because insurance does not always cover them. I have found one who is also an MD and is covered by my insurance.

I like your doctor's words: "Let's try to get you to age 60 in the same shape you are now and I think you'll be good".