Ever had a thought disappear into thin air, as soon as it formed in your mind? And you know that this thought was really good, groundbreaking even. But now it is gone, scattered to the wind. I blamed baby brain, however, once the baby had been brought into the world I should have gone back to normal. I really didn’t.
I also have a very fragile memory because of MS. Non-MS people will want to comfort you and tell you that they have a bad memory too. But I forgot my friend’s child’s name the other day, and she and my daughter have been at school together for two years. There is no getting around the fact that this is not normal memory loss.
Another aspect is the complete inability to make simple decisions. Choosing between two similar packets of pasta can take ten minutes. Weighing up pros and cons, using my judgment as a wife and mother, making decisions by knowing what they would like are all too complex for my brain to deal with sometimes. And when these feats of cognitive acrobatics are possible, sometimes they sap so much mental energy I need a sleep afterward.
So now you know a little of what it is like to have cognitive disturbances brought on by Multiple Sclerosis. Or maybe some of the above rings true for you as a fellow MS sufferer?
Let me know in a comment below which one applies to you. I love hearing from you all!
Most MS sufferers only see a neurologist for the first time when they are diagnosed. Quite often the person is in a state of crisis, with symptoms flaring so badly that they have sought treatment from a GP or other health professional. It is also a stressful time, with high anxiety and confusion making them think over worst case scenarios over and over. And that isn’t taking into account the rest of that person’s family and how they feel.
That being the case, the majority are not in a great position to decide which neurologist is the best one for them to see. So they see the one that their GP sends them to. Or to the one that is available soonest, because they want to know what is wrong as soon as possible. And this works well for some people.
But it’s all about you
After the dust settles, there is room to look at your neurologist more closely.
And if you are not satisfied with what you see, or are not comfortable with the way they speak to you, there arises the question of what can I do?
Firstly, know that about 80% of MSer’s change neuro’s in the first year after their diagnosis. So it is a pretty common thing to do. Talk to other’s, and get a feel for what other neuro’s do for their patients. Facebook groups are a great way to find out about good neurologists that are in your area. Ask people why they like theirs, and also figure out what is important to you in a neurologist. Do you want someone who endorses alternative therapies, one who is close by, has a special interest in MS, or simply deals well with you bringing your toddler to appointments? It is important to know that you have the right to change who you see for your MS.
It is also important that you feel confident working with your chosen specialist. After all, you are paying them to help you fight this disease on your terms. They are working for you.
To find a neurologist in your area, use the link below. It can also find lots of other health services for you.
As this is my first post here, I should probably introduce myself. I am an Aussie Mum of one, who happens to have Multiple Sclerosis. I have had MS officially for seven years now, unofficially a lot longer (like most of us). In that time, I have gained a lot of experience and information, that I hope will help those that are newly diagnosed or those who are experiencing a sudden surge of disease activity after a time of remission.
Here’s the thing- doctors will tell you many things about MS, but you will get all of the juicy, interesting bits of information from other sufferers. And I really hate to rest on a cliche here, but it has to be said- Only those going through the “journey” of MS really know what you go through. So, a neurologist probably won’t be able to tell you how your diagnosis will bring on a personal chapter of grief for the person you were with the future you had. Or how to cope with the pain of using those injectables. Or what to do if you think you need to go to the hospital emergency rooms but aren’t sure.
So this blog is aimed at answering the questions we all had at one time or another, as well as talking in general about how MS changes us all on the inside.
At the time of typing, I have RRMS (relapsing remitting MS) with mainly cognitive disabilities. I am currently taking Tecfidera, but have used Tysabri, Betafuron, and Gylenia in the past. I hope you enjoy my stuff, please feel free to ask me anything.