I am not a Doctor of any sort

[RoyceNewton]

I am not a Doctor of any sort.

RoyceNewton

RoyceNewton•

in a few seconds•0 Reply

This is my opinion, ignore it if "YOU" do not like it or it does not suit "YOU", I am always okay with that. In my twenty years living Relapsing Remitting ms(RRms) life I have picked up one or two pieces of advice that I might like to pass on to "YOU" either newly diagnosed(newbie) or someone in the process of getting your membership in our family confirmed.

Oksy your Neurologist(neuro) thinks "YOU" have ms buts wants to wait and see. Pardon my yelling but NO, NO, NO. It is very okay for him or her to say wait, it is VERY much not in your best interest. Go to a second neuro and get a second opinion. Be smart and do not say ms, just describe your symptoms and let them have the ms idea first. If "YOU" are subtle perhaps: YOU" can guide them in that direction. Understand from the neuros perspective that they may not want to say ms. There is no cure and they really do not want to tell anybody that they cannot fix them. I will tell "YOU".it is inconvenient and a bit of a life game changer, BUT it is a VERY VERY DOable. A diagnosis (Dx) of ms is not the horror story that it used to be, like I said more of an inconvenience.

I might suggest that spinal taps are not always your best friend, remember though I really do not like needles so somebody sticking one in my spine does not appeal at all. No, I have never had one. Expect to change your neuro, this is normal. I have had four and she who must be obeyed has had three. It is okay and is nothing to be scared about.

All your nervousness and the horror stories that well-meaning people will tell "YOU" are more than not likely not to come to fruition. Abandonment by friends family, spouses I am very sorry to say may. We have a chronic incurable illness. It scares us and it really scares other people. It does not help that sometimes we are quite moody and bitchy, but this is the illness it is not all "YOU" Learn to forgive people as "YOU" will often have to ask for forgiveness for your indiscretions. Learn to protect yourself. Wearing protective underwear may be a challenge but think about the challenge when "YOU" are outside your house and soil yourself in public. Believe me when I say "YOU" are not ready for that.

THERE IS NO CURE, so keep your money in your wallet. Disease Modifying Therapies(DMTs) may suck but they are the best we have. Get on them sooner rather than later. I did Betaseron for many years and we all know my fear of needles, but today in 2018 there are far more options available than I ever had, so start. Cry be upset, but take your medicine for the rest of your life. Have them put a tablet in your mouth and a gold coin so "YOU" can pay the ferryman to cross the river Styx as they bury "YOU" . I think my ancient history is right, feel free to correct me if I am wrong. This is a lifelong illness, I am giving "YOU" until ninety, so "YOU have a long time with RRms, accept that and do what 'YOU" need to do to live this illness very well. There is truly no need not to.

Royce

be strong, be smart. Live your long ms life well and be kind to yourself and others.