I was diagnosed with MS 4 years ago. I was told I had only 2 lesions; they did a spinal tap which said was likely MS but should have MS to "prove". I know my wording is wrong. I have been to 4 different neurologists who all agreed. Recently I had another MRI and have a lot more lesions. I have been on Rebif, Gilenya, Copaxone and Aubagio and have had Liver problems, etc with those meds.
I had to stop Aubagio due to very high blood pressure and that scared me because in 2015 I had an aneurysm and had very high blood pressure so I am scared of that happening again. The neurologist I was seeing could never seem to see me but I saw his assistant. She was the first one to tell me my MRIs were much worse and said I must go on another med and just gave me a bunch of pamphlets, and told me to go home and decide which one I wanted to try. I can't even see my neuro! So I have made a new appointment with with a new one in January. He is from the same hospital that did my last MRI.
Now, I'm thinking of doing nothing medication wise, as I haven't had a relapse since my aneurysm last year. I'm just wondering how I could have more lesions and have no relapse. Is it possible to have this and not have a relapse or should I not be so "comfortable" with that. I don't like all the side effects from the MS medications but I'm also scared in a way to let things go because my symptoms have been mostly cognitive. Memory, getting things confused, etc, just too hard put it all down here.
My husband gets angry because I can't seem to follow directions on how to get somewhere and then I can never remember how we did it. I can't even remember my sisters wedding that was 45 years ago. She said I did the reception for her and made her cake! I still didn't believe it until I saw pictures and there I was! Just trying to give you examples of my memory issue. That's the part that scares me, as I am 68. I fear that will only get worse, of course. I just don't know what to do.
I've noticed the hot flashes have started again and the pins and needles in my feet. What should I do? I want to tell this new neuro I don't want medication but just a neuro I can count on or call if I have a problem. Is that crazy? I'm just so confused. I think if I have lots more lesions then I should be much worse, shouldn't I? Would so appreciate an opinion here. Thank you so much!
Let’s consider the facts in your case so we can lessen your confusion enough to help with your decision. In answering your question we will assume you do have multiple sclerosis , although this is not at all clear from your question.
1. The first fact is that you are 68 years old and only diagnosed with MS 4 years ago. While it is increasingly common to diagnosis MS in older people, this is still rare. Most people diagnosed with MS at your age have probably had MS already for many years and often do not respond to disease modifying treatments as well as younger people. In fact we have very little information on how to treat MS in your age group. This is because almost all clinical trials exclude people who are your age from participation.
2. Many people your age have other medical conditions, such as high blood pressure and diabetes, that can also cause white spots on an MRI scan. This can make it difficult to interpret changes over time.
3. Do not be concerned about doctors telling you there are more white matter lesions, even though you have experienced no relapses. First of all, relapses are rare at your age. Second, even at younger ages we see far more MRI activity (new lesions over time) than we see relapses. This is what makes MRI such a wonderful way to monitor the activity of your disease.
So here is my suggestion for your visit with the new neurologist in January
1. Ask the new doctor to convince you that you have Multiple Sclerosis
2. If you do have MS, ask him or her review the MRI scans with you and show you the changes over time
3. Ask him or her to review the possible reasons for your cognitive complaints. One of the most common reasons for this complaint is anxiety and depression
4. Ask him or her to review all the options for treatment vs just monitoring your condition over time
This will probably require 2 or 3 separate visits but will be worth the effort.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
Professor of Clinical Neurosciences
University of California San Diego