Here is My Question:
I have just seen another neurologist. My symptoms indicate multiple sclerosis. Due to the MRI though they will not diagnose me. My family doctor and the ENT I saw both said it was a MS. Both doctors deferred to a neurologist for him to give me a diagnosis.
Based on my MRI report though the neurologist will not diagnose me. He said I didn't fit the typical lesion pattern in my brain.
This is what the MRI report said; " 10–11 foci of T2/FLAIR hyperintensity within the supratentorial cortical and periventricle white matter. These measure at 24–5 mm in size.
I have been going to my doctor for almost 2 years with various neurological complaints. Everything else has been ruled out. Yet the neurologist I saw could not give me another explanation of what was going on.
Over the course of what's been happening I've even questioned if I am doing this to myself. I went to a psychiatrist who assured me the symptoms were organic in nature.
If this is not MS, great I don't want MS. Unfortunately, my symptoms are impacting my life. I had to use a cane for about nine months because I could hardly lift my left foot. Even now I trip over the toes of that foot. I now have tremors where I'm knocking things over when I try to reach for them. Do you know how hard it is to pencil in your eyebrows when you're shaking? I'm beginning to look like Bette Davis, in Whatever Happened to Baby Jane. LOL
I am a little peeved at that neurologist. He had all my test results and had already made a decision before even seeing me that I did not have multiple sclerosis. His exam consisted of asking me to open my mouth and say ahh, listening to my heart and lungs. That's it. He didn't even ask what my symptoms were. When he walked in he said that he only had 15 minutes with me, and he always runs on time.
He then proceeded to give me a referral to see another neurologist. I'm tired of getting handed off to another doctor because the doctor I am seeing doesn't have an answer and is not interested in trying to find out what's going on with me.
I am a 55-year-old woman who has had various neurological symptoms since I was 26. I'm really good at ignoring symptoms. But it has gotten to the point I cannot ignore them anymore.
Any advice would be more than appreciated. I live in a very small rural community in Ohio. I have been to the Cleveland clinic and that Dr. also said I didn't have MS. Fine if I don't have MS where do I go from here? And why does my doctor and my ENT both say I have it?
As a sidenote, I'm sure you can tell I'm frustrated and concerned. Every time some medical person ask me if I'm anxious I tell them yes wouldn't you be anxious if you were sick and nobody was helping you? So I went on the Internet and I have been researching and become my own advocate. I use the national Institute of health library. So my research is a viable source. Unfortunately I made the mistake of mentioning something to the neurologist I jjust saw. He immediately became defensive and told me to Google the next doctor that I am going to be seeing. He then turned and walked out of the room and that was the end of the visit.
I guess this is a philosophical question. If no one else is helping me why can"t I try to help myself. And why is that so wrong?
Please feel free to edit this rather long question if needed.
In a case such as yours, it is important to arrange a follow-up visit with the neurologist to discuss the cause of your symptoms. Please also understand that white spots on an MRI are not synonymous with MS in most cases. Misinterpretation of an MRI scan is one of the most common reasons for doctors, usually non neurologists, to misdiagnosis MS.
If a good neurologist takes a full history and examination and reviews your images and things you have a conversion disorder, be open this possibility and ask them to refer you to someone who can help you. Many doctors are unwilling to tell people they have a conversion disorder because it takes a lot of time to help people with this type of problem.
One thing is for sure: If you’ve experienced symptoms for 30 years and several neurologists still can not find anything wrong, it is probably not a serious problem and unlikely to be MS. But this does not mean you do not have problems that you need help with managing.
I do not find that most psychiatrists are very helpful with patients who have conversion disorders. The best solution is a good physical and occupational therapist and a neurologist capable of working with you over time.
Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego
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