I was diagnosed 4 years ago with relapsing remitting. In the MS community no one ever talks about lesions black holes or myelin. Why!

[Mark1499]

After my initial diagnosis on my next visit I asked my neurologist how many lesions I had. He said “ I don’t really know. This guy is one of the most renowned neurologists in the world. I said, how long have you been doing this? X years. Then what does your gut say? He said in between 50 and 75 but they have grouped together forming 3 black holes. Then he explained the myelin thing. Is this hesitancy to talk about what’s going on in your brain fear of freaking you out? Really curious!

[DM0329]

Boy can I relate to your post!

But, I don't know why some neurologists are reluctant to "tell it like it is" or even "share your MRIs" with the patient. I was dx at the age of 26 way back in 1994. I can only suspect that my first neurologist was "putting a positive" spin on my MS dx, as there were no treatment options available at that time.

However, three years later, after he had told me when diagnosing me "young women tend to do very well with MS" etc. It was diagnose and adios. But, when I came back in 1997, with vision issues, my three-year-follow-up MRI showed substantial "silent progression" at which time he fold me "I was lucky" three times as all of the new lesions "were in parts of the brain that you don't use." Silent progression; yet substantial progression.

In the US, Betaseron and Avonex were available, he suggested that I start Avonex as soon as possible. He scared the crap out of me, and even though I am a huge needle weenie, I had managed to give myself intra-muscular injections for twenty five years.

In 2022, I had enough with the shots, my MRIs were stable on Avonex, I switched to Aubagio, a once day pill, which I love. It's a great option for "older folks" with stable MS. I am now 56 years young with SPMS "ish" as the neurologist says. Lol.

But, I have many black holes on my MRIs, the physician assistant to my neurologist told me that once, and I asked my neurologist to see my scans (of course he is always busy with interruptions during appointments, such a busy practice, but by the time he came back in, I was reluctant as I tend to be "obsessive" and may fixate on the pictures.

IMHO, I would have "freaked out" as you said. Just give me the details, I don't need to see it, as it had been more than fifteen years since my diagnosis, and my MRIs were stable with my neurological exams being mostly stable too. Of course, my tandem walk was never good, and now it's really bad, but I have a disability placard, if I get pulled over by the police. LOL

Without our humor where would be, huh? Be well. 😂🙏🤞

[Curlygoats in reply to DM0329]

I am sorry your Dr won't share your scans with you. My Drs always have and they explain if they are new and when technology has allowed then to show up better. Perhaps you need to find a Dr who will partner with you during this journey rather than one who is not being open with you

[Mark1499 in reply to DM0329]

Thanks for your reply as well as others they are greatly appreciated! Praying for us all in our challenges! Nice to see someone else who believes humor helps lighten the load. Now I’m going to Walmart and after walking through the parking lot I will happily arrive at a cart thinking “ lord I must have looked like Brandon walking up here “

[StacyHayward]

I’ve never thought to ask for a number of lesions. And somehow I’ve never heard of black holes even after 23 years. But I’ve been more concerned about symptoms, how to treat them and physical progression of the disease. I guess I should ask my neuro sometime.

[NorasMom]

I'm with StacyHayward on this one. I've never had any interest in knowing because I don't see that it would change anything. To me, it would be like the doctor telling me how many age spots I've developed or how many hairs there are on my head.

Maybe because I dealt with MS for so many years without a diagnosis? Maybe because my symptoms have never matched the number or locations of my lesions? It's just not something that matters to me.

I do think, however, that your neurologist should be willing to answer your questions. If you want to know these things, then he needs to take the time to explain them to you.

[kdali]

My MD knows I read the reports and always confirms that I did read them and asks if I have any questions. We looked at the scans together on my first visit. My questions now are impossible to answer and irrelevant to my care.

[mrsmike9]

I asked once, just out of curiosity. I was told that it's hard to tell but I have a "really big one" on the left. I think that they can overlap so it's probably hard to tell.

[carolek572 CommunityAmbassador]

This is an excellent question,    Mark1499 ! Did you know that there is a neurologist associated with MSAA that you can ask your question to? Please visit mymsaa.org, and type ‘ask a doctor’ in the search box, for more information. Also, I believe another member,    Jesmcd2 just posted something recently on this very topic.

[Goldilockssearching]

mine said something similar. I think they don’t have much to say because not enough is known or certain. They care about no NEW ones & lack of progression. What’s done is done so to speak until they figure out a way to undo it.

[Mark1499 in reply to Goldilockssearching]

I understand that it is what it is but I think at 62 you tell me I’ve got this neuro muscular disease so explain to me what’s going on in there. Just curious but I can see what you’re saying. Don’t know if you’re aware but I saw a guy a few weeks ago who had received stem cell treatment and the results were amazing!

[Goldilockssearching in reply to Mark1499]

I agree they’re really bad at that!

They handed me folders of info & sent me on my way.

[ahrogers]

One thing that likely contributes to this is the radiologists report. My first brain MRI only said >10 lesions. Since I had several in my spinal cord too it didn't really matter to me what the exact number was. Location is more relevant to me because that determines the symptoms. I told my last neurologist during our first (and only) visit about my first symptoms of relapse being loss of feeling when I flossed and cleaned inside my ear canal. When she was scrolling through my MRI she pointed to a lesion and said it was the culprit. A previous neurologist pulled up my MRI and started scrolling through apparently expecting to find few lesions, I assume because my symptoms were minimal. She was shocked to see how many were there.Like kdali I read my radiology reports to see if they comment on anything new. But we are both nurses so understand it somewhat.

Doctors also aren't given enough time with each patient to thoroughly review MRIs and other pertinent information as well as do the neuro exam and discuss treatment. It would be nice if they could spend 30-60 minutes every time you see them but there just aren't enough doctors to make that possible.

Try to write down your questions and prioritize what is important to you. You may only have time to ask a few each appointment. As you can tell from others responses, everyone has their own idea as to what's important to them. You have to let your doctor know what is important to you.

[Mark1499 in reply to ahrogers]

Thanks for the info. You’re the 1st one in four years willing to discuss. I do understand that lesions are like real estate. Location is critical. I am going to start making a list. My sisters advised me as they have ms as well. I can’t recall having an mri on my spine. That will be on there. Thanks for your response I’m about to research spinal lesions. Do you know anything about stem cell treatments ?

[ahrogers in reply to Mark1499]

I only know basic info about stem cell transplants. Since I was 45 when I was diagnosed I was on the older side of being a candidate and back then it wasn't as prevalent a treatment. It seems to be getting a little more common now but still probably underutilized.

[hairbrain4]

When I was diagnosed 18 years ago my neuro told me I had 11 active leisons and to many to count inactive leisons. He showed me the scans & yes my brain was lit up. I also had 5 bands on my spine. The MS was very active at the time of my diagnosis. The dr put me in the hospital for 24 hours with a steroid drip to see if we could get the MS to slow down or stop being active. My MRIs have been stable with no progression over the past 17 years. I stayed on a Disease Modifying Treatment from the start of my diagnosis. Today the only symptoms I have is numbness on the bottom of my feet. Everything thing else has gone over the past couple of years. So my MS is in complete remission right now.

[Mark1499 in reply to hairbrain4]

That’s awesome to hear!

[hairbrain4 in reply to Mark1499]

👍😀

[Jesmcd2 CommunityAmbassador]

Hi Mark1499 just saw this sry... T1 Black Hole isnt very common. And takes long time to dxd. Believe me, i have 2, they are George and Heneritta. Mine just showed up and stayed. George is huge and in my cerebellum. As far as asking how many lesions you have? Once your dxded, l dont think it matters anymore.? And it 'never' matters here. 🙂🤗💕🌠

[Mark1499 in reply to Jesmcd2]

thanks for your reply. I’m just like it’s mom brain and there’s all this stuff going on in there. I’m kind of like to know understand it’s where they are but I also know it’s my body and I have a right to know what’s going on in my head. From what I understand, my lesions formed together, which created three black holes or that’s the way he explained it.

What does dxd mean?

[Jesmcd2 CommunityAmbassador in reply to Mark1499]

Opps sorry dxd= diagnose 🙂 I understand how you feel, about wanting to know whats going on and you want to know what kind of damage is going on, without you even knowing it. Its a helpless feeling and 1 MS is amazing at... Cause MS does what it wants to, when it wants to. Now if your Neuro isnt sharing your MRI? Or you feel he isnt answering you, not getting along, get a new one. MSAA can help you with that🙂

Hopefully you are on a MS medication? 🤗💕🌠