I have a question about Late Onset MS
For the last 2 1/2 years now, I have been going in circles seeing 4 neurologists who haven't helped me. Now I know that after all the schooling they go through, you'd think someone could come up with a diagnosis, but no. And it's irritating to think that I have run from one to another with no satisfaction, I have an MRI disk from one place that shows the brain, and with the help of AI? I did get somewhat of an idea, so I am attaching that. I tell you, the patient should not have to make that much of an efffort, considering 13 years of school, for a neurologist.
"This MRI image appears to be an axial slice (cross-sectional view) of the brain. The dark, irregularly-shaped areas visible within the brain represent abnormalities or lesions consistent with multiple sclerosis (MS). Multiple sclerosis is an autoimmune disorder that causes inflammation and damage to the myelin sheaths that insulate nerve fibers in the brain and spinal cord. These lesions appear as dark spots or patches on MRI scans of the brain and are characteristic findings in patients with multiple sclerosis. "
Hi,
! I am sorry you have gonne so long without a firm diagnosis. Do any of the doctors offer you any kind of a diagnosis? We cannot provide medical advice or diagnosis, for your safety. And, your MRI does seem to show some unusual activity.
Usually, to diagnose MS, doctors will want to see lesion activity in both the spine and the brain, but this is not always the case. And there are other tests that are taken into consideration when trying to diagnose MS. You can read a but about the diagnostic criteria here -- https://multiplesclerosis.net/diagnosis/mcdonald-criteria. So, while the MRI results are important, I do hope your doctors are doing other tests as well. Here's some of the tests they may do -- https://multiplesclerosis.net/diagnosis/tools-your-doctor-will-use-to-make-a-diagnosis. And one last thing. Have you had a spinal tap (also known as a lumbar puncture) done? Sometimes, doctors will do this test when the MRI results are inconclusive. You can read about the procedure here -- https://multiplesclerosis.net/diagnosis/cerebrospinal-fluid-analysis. I am sorry you are having to do so much of your own research and are having to keep pushing for answers. That's not fair. And I wish it weren't the case. That said, you are your own best advocate and as exhausting as it is, please keep advocating for yourself and your health.
Best, Erin, MultipleSclerosis.net Team Member.Thsnks, Erin, for the response. Yes, it has been difficult and still IS. I am not sure what to do honestly. And what really confuses me is.....for a neurologist who has had 13 years of schooling, why it's so difficult to GET a diagnosis. I had one person tell me "you just haven't found the right doctor". Should there BE a right doctor? I've seen 4, and in my opinion, the first doctor should have been the right doctor. I'll stop now, and again, thank you for responding. Carl
(Carl), good grief! That *is* frustrating! One would think that after FOUR different doctors, you would have found the 'right one'! I mean, all you can do is just . . . keep going. I know that's kind of lame advice, but, well, it's all you can do to get the answers you are seeking.
Best, Erin, MultipleSclerosis.net Team Member.
In all fairness to doc #2, he DID refer me to an MS clinic 75 miles away. However, as it was inconvenient for me to travel 150 miles round trip, I found a doctor at the local hospital. HE told me that he didn't think I had MS (saying this without any examination). So, to further explain, we live in a rural area, where medical access is, especially in this case, "slim pickings". And I'm not sure , honestly, that I will GET a diagnosis. Thanks for listening. Carl.
wow 150 miles roundtrip is really quite a distance. Just thinking about the time that it would take the travel, then the time for the appointment (and any tests that you might need), that's a full and exhausting day! I'm sure it's equally frustrating not having answers to your concerns or an accurate diagnosis. I wonder if going to the MS clinic for a possible diagnosis appointment would help you to get a possible diagnosis that could then be managed locally or virtually. It's certainly quite a challenge to have to weigh out the travels with the diagnosis. I hope that you're able to get the answers that you need wherever you go for care. In the meantime, I'm glad that you found this community and are active in the conversations.
Best
Alene, Moderator
My symptoms began in 1982. I was 25. No MRIs back then. My wonderful Neuro, diagnosed me on symptoms and a whole battery of tests - of which the lumbar puncture showed evidence of MS. My symptoms remained mild, come and go. I attended many seminars and tried to learn as much as I could. One stands out. Doctors debated whether a person with mild symptoms should be told they have MS or not. The “or nots” defended their position by concerns folks will change their life anticipating the worst outcome when in fact the disease may not lead to disability at all. I WAS MORTIFIED! The data then was 80% of Neurologist would not diagnose early symptoms. (Even lie and say it’s not MS when they no it is). I’ve wondered if the availability of meds has changed that stance- but I doubt it. Imagine if mild symptom folks were included in studies tracking outcomes. Perhaps that is all
That’s needed to offer hope. Not everyone becomes disabled.
I’m sorry this has happened to you and I hope you get solid answers soon. You need to trust physicians are telling you the truth.it’s just awful isn’t it? I’m so sorry no one is helping you or listening to you. I personally experience the same thing. I have also had a 3TMRI scan which I believe is what you’re talking about where they slice the brain into pieces I finally found a MS specialist that did that very thing for me, he saw many more lesions doing the scan that way. I know we’re all supposed to wait and just going somewhere else doesn’t necessarily help. A neurologist is great. I’ve had a few of them. Tell me they felt strongly. It was MS. However, the MS specialist has to tell you that. Where I live there is only one in our state and there are reasons I do not care for this man not just because of MS, but personal things. I’ve been to I don’t know who your MS doctor is and I certainly don’t want to get in your business. I got diagnosed about four years ago maybe three years ago and I’m 54 although I have had MS I believe for a very very long time. I just didn’t recognize it either. I went to Dr. LaGanke in Cullman, Alabama, I did it because I saw someone else went there and the reviews were outstanding. It’s 12 hours away from me and it’s worth every mile. His mother died from complications of MS and he’s dedicated his entire life to find a cure and to help people Help has given me is immeasurable. The empathy that he has is also immeasurable. He is a Christian whether you like that or not that’s up to you. He’s always at at least 2 to 3 hours behind because he spends that much time with each patient. The weight is worth it he sits he listens. I am sure there are many others that are the same, but I have not been able to find them. Consider this option please. And for some odd crazy reason you don’t like it keep going. I have been to the top hospitals in the nation and got no answers. They all say the same thing the last guy said. Dr. LaGanke put me on a medication and I haven’t had a new lesion in two years, I still have all of the damage I had before it won’t go away. But he will do his best to make you as normal as possible. God bless you. I’m going to say a prayer for you when I’m done writing because I know. you are shedding just like I was angry you and frustrated and belittled. My heart is with you.💗 thank you for sharing this. We're really happy to hear you found a doctor who works really well for you.
