Glad you are here! Welcome. This was the first group I joined, as well.
I’m not sure what studies exist in regards to NMO and MS and TX, but if you haven’t already, I would recommend a Google search of studies (if all three together don’t return anything, try two of the three and see if you can find the other one involved within a study related to those two topics…)
Now, you could get lost in research and for a long time; I was lost in it myself.
I think the best thing you can do for you (if you are unsure of where to proceed with treatment or even to receive a definitive diagnosis) would be to get that second opinion. I went through many doctors before I found the one that treated me as a whole person. I didn’t like the idea of having a doctor tell me I was supposed to “feel” a certain way. “I’m sorry doc, but I feel this way, and that’s just how it is! Now, we can treat how I feel (and you can run your tests, evaluate them, prescribe meds based on objective test results and subjective analysis), OR I find a doctor who can.”
When I was first diagnosed, I went through a list of meds in trying to treat my form of MS. First, I have a very touchy disposition towards certain medication types (and many were black-listed from the very beginning). Second, upon trying the few that remained, I noticed that my symptoms did not improve and that I had side-effects to the meds on top of it. The thing about MS meds is that they work to slow the progression. The progression of MS can change throughout the course of the disease (with or without meds, it can quicken, slow, etc…). Still having symptoms AND GAINING side-effects was unacceptable to me.
My doctor concurred with me that the treatment of my symptoms was the best course of action. So, that is what we are doing. Anxiety, migraines, spasticity, etc… all are treated individually. And the thing is, even with the introduction of a medication to slow the progression, I would be treating these individual symptoms concurrently anyway.
The most difficult part about the course of my illness has been my diminished ability to be FULLY independent or to be the active and intelligent individual I once used to be. It is devastating. I used to run track, bike ride, enjoy walks through the woods or on the beach, be able to have tremendous foresight, have nearly photographic memory, and plan without error. Now, I feel like a complete failure when I don’t adhere to a plan or miss an appointment, I am not able to remember things like I used to (especially the daily/weekly things), and my foresight turns to hindsight. The independence I enjoyed and felt empowered through has left me needing others (at some point or another). Recently, I have had leg trouble, and cannot do ¾ of the things I used to do.
So, after being completely moribund about the above course of events for some time, I decided to look at what I CAN do while I still have SOME foresight! I know that there could come a time when I am completely dependent on others or when I cannot walk at all. I don’t like to think about it and find it difficult to accept, but if it does happen, I would rather be prepared than not.
I am talking to my partner about what is going on (I had been hiding a lot from everyone, previously, for two reasons: 1) I was hoping to retain all of my independence and 2) I didn’t want to feel like a burden to him or anyone.). Also, I am talking with my doctors now about assistive devices. When I was first diagnosed with MS, I was of the mindset that I would never need any and that I could and would overcome anything. It has taken a total change in my thought-process to be able to even consider these things. After being morose on the couch for months on end because my legs hurt when I walked, I decided, though, that it would certainly be better for me to have some type of walker or other assistance to be able to actually GO PLACES! I decided it would be better to use my foresight and opt in for a rail in my shower, also, to maintain my balance rather than risk a fall (I have already lost my balance too many times in the shower.).
But aside from these things, I have had to do even MORE to make myself OK with everything. And I still don’t think I am entirely OK. But I am finding that balance, slowly. Knowing that I won’t be running marathons or jumping hurdles anymore or simply being anywhere near as active as I once was, I HAVE to find something that is gratifying. I have always felt good helping others and that will never change, so as much as I can in whatever way I can, I will still do this – it might not be the active errand-running help as before, but even listening can be done actively. And that helps me change my perspective a bit…
Also, I have to think about what I can still do that I like to do…photography, music, art, and writing. All of these things, I am still capable of and still enjoy. With the foresight that I still have, I am aware that I might lose the ability to do some of these things, and I am already looking at methods I can incorporate to keep as much of my creative function around.
This all has been a huge grieving process fo rme as so much has been lost and there is anxiety of the unknown about what might still be. All I can do is what I can do NOW. I am allowed to be upset about the past and my losses – but they have made the strong person I am today, capable of surviving difficult times, and any anxiety I feel about my future I have to turn into logic – what can I do IF that happens (I plan ahead while I can), and then I let it go… I’m not there yet.
Each person is unique (in the entire world), and therefore, each person with MS is going to project their symptoms differently, feel the effects differently and hold their perspectives about the disease differently. One thing remains the same: we are human beings. As humans, we have basic needs and greater needs upon our hierarchy. While others (like doctors) can seek to fulfill these needs for us, it is only in each person to fulfill those needs or to let others know what those needs are in order to have them fulfilled.
Personally, I have a need upon my own hierarchy (besides eating and bathing, etc...) to be loved; I cannot expect others to simply love me. First, I must love myself, and then I can let others know that I need love. There are other needs I have, but this one is always top priority – retain a love for myself.
I hope some of this helps...I'm still learning a lot, too...
"If a man does not keep pace with his companions, perhaps it is because he marches to the beat of a different drummer. Let every man keep step to the music that he hears, however measured or far away." - Henry David Thoreau ~Audrey