Here is My Question:
Recently I read that many lesions in MS are invisible. Among other things, it said most lesions seen in the MRI of the brain do not correlate well with the problems the patient has. "A good doctor will not try to tell you different". My neuro told me on my last visit "well, I would say from your history and where your lesions are, you won't have any difficulty walking"! Now, I know that should be good news, but I felt "let down", as that has never been my concern or problem. My problems have all been cognitive. I "forget where I'm going when driving down the road", or "my children tell me they already told me that several times, I see things (words and numbers) wrong, my hearing and sense of smell is affected. It has been very difficult and I think I felt "my doctor doesn't even know me!" With all due respect to those with difficulty walking, if I were given a choice (of course we never are), I would actually choose the wheel chair over "having all my 'faculties' about me".
It is so frightening when you are just 2 blocks from your home and can't remember how to get there! Driving home and "suddenly can't remember where you are going". I could go on, but I won't bore you with more. I'm sure you get the idea. My question is, I am going to be seeing my neuro May 5th. How can I make him understand this? I believe I had a "flare" recently, as the right side of my head plugged (for lack of better term); I am left with much worse ear noises and now I have this strange smell that comes and goes! Some of my cognitive issues are now back or worse. He never addresses my cognitive issues and I feel he doesn't care about that. As long as I can walk, I guess I'm ok. I'm afraid he won't take me seriously. I have printed off your article on smell and hearing and the one on "hidden" lesions. I wanted to know your opinion on this? I sometimes wonder if I have other lesions (I have actually, only had 2 MRIs in the beginning, with and without contrast), plus I had a spinal tap that all said I had MS. But shouldn't I have had another MRI since I have been on treatment? I was diagnosed in 2012. He just looks at my old MRI's. I just don't feel I'm taken seriously because I am mobile. I once thought, that's what MS is. I now know differently. I guess that's why many refer to it as the "invisible" disease. Thank you for listening. I just want my neuro to understand "me".
Please refer to a blog I wrote over a year ago called, "Finding a doctor for your MS.” Your question really gets at the heart of the doctor-patient dynamic. The patient wants to know what specifically is causing their problem and what if anything can be done about it. The doctor in turn tries to answer your questions in a way that will, “do no harm” , but provide enough information to assist and reassure, if possible. Sometimes doctors will point to something positive to deflect from your single minded concern about another issue. This is often not a good strategy unless your concern is adequately addressed. This is commonly the case in people with MS primarily concerned about hidden symptoms for which their is little objective evidence.
There are two good strategies to take with your doctor in this circumstance:
1. Ask him or her, “what is causing my concerns with cognition, if it is not directly related to my MS?” Remember, research suggests that when one’s perception of cognitive difficulty is worse than what other’s observe, there are often other factors causing your perception of cognitive impairment including depression, anxiety and stress. This would be good news as these problems are very treatable
2. Ask him or her for an independent second opinion as to the cause of your cognitive difficulties. This kind of independent consultant should have no stake in maintaining an ongoing doctor-patient relationship and may be more inclined to give you the straight scoop, so to speak.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego
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