Reply To: Worried

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8 months ago

You have some medical training so would probably understand a lot of the articles out there better than I do as an accountant ;0 I just know it is all expensive! no matter what way you turn! But here are some of the favorite links I have found. Knowing the most you can will equip you to have a good discussion with a neurologist. Mostly I talk to mine about any changes I should make to life habits, getting enough sleep, reducing stress, any changes to diet I should make and then the best drug treatment plan. He seems most equipped to only talk about the last one while they should all be part of the picture. Even when I went to the Mayo in Rochester they didn’t feel that diet was an effective tool against MS…they said they don’t encourage people to eat cheeseburgers everynight as that wouldn’t be good for anyone but to eat a good diet helps everyone. They didn’t support any of the MS specific diets that people are selling books on or making money doing speaking tours.

Here is one link I had for newly diagnosed-


One on the various DMT options

Your age can also have an impact on the type of MS you have and it’s progression. I will be seeing Neuro Phsych in Mayo in a few weeks. They are very hard to get in to see! often with a year waiting time so I am glad I got an appt about 5 months after requesting. I am hoping they can measure cognitive loss and hopefully review grey matter and white matter impact based on my lesion locations and changes.

So- equip yourself for your appointment knowing as much as possible to ask the right questions and be taken seriously. Write down all of your symptoms, their patterns (ie only at night or when sitting, or when walking) and how they change during the day or when you are fatigued. Only by going through some of these sites did I even know what some of the MS symptoms were that I was experiencing. For example when I told the Mayo what my initial symptom was in my vision (a blind spot in the lower right quandrant of my right eye where a small kidney shaped spot didn’t have vision but instead had a black and white checkerboard pattern) for three months in my 2nd trimester they said that was likely an optical migraine and not MS. It went away in my 3rd trimester. My biggest mobility issue is foot drop in my right foot and when trying a FES to see if that would help they asked me if my knee also sometimes buckled and I said yes, occasionally, and apparently that is also due to my MS. I now recognize that I have some spastacity and spasms that are improved by taking Gralise.

So- prepare yourself for your appointment by knowing all the possible MS symptoms and which ones you experience. The symptoms and the MRI could point you another direction entirely. Hopefully you get a good neurologist and some resolution-