Okay, so I went to see my neurologist yesterday for my 6 month visit. My results I thought were good based soley on what little I actually understood from the notes from the file I got from the patient portal, my neurologist didn't think my MRI/MRA were very good. H started out with the good part, though: "There were no major hemorrhages! But . . . "Here goes," he asked me, "Do you know what an aneurysms is?" And he drew me a picture to help explain the two tiny bulges in the vessles in my brain he saw and was very concerned with. He said they could have caused headaches to just have that pressure against the vessles' walls. He wants to keep and eye on them, but if they get much bigger, he's going to send me over to see a neurosurgeon. Then I told him about the headache that had me seeing psychodelic colors and distorted faces. He said I'd experienced a migrain! That really surprised me. I used to have migraines when I was a teen and in my early 20s, and those had meburing myself in bed with curtains closed to make it really dark, and couldn't even stand it if my cat jumped up onto my bed, not an LSD trip! He said gently, "No, it was a migraine." And h said with blood from the vessles leaking into my orbital socket. it would distort my vision. Okay, so more good news? How about finally getting to talk about the MRI done back in August and hadn't gotten to talk to me face to face about . . .
I'd off-handedly mentioned that my balance had been sort of whacked out for several weeks, and while I normally did the 25 foot walk without my cane, I didn't feel steady enough to do it this time. My neurologist did a more detailed exam, pressing a tuning fork to each foot just below my ankle and asking if I felt any vibration (I told him, no), then telling me to stand in front of him, lift my arms, palms up, and march in place for a time, then close my eyes and do that, and . . . . whoa! "Okay, sit back down." He then said he was NOT surprised I felt my balance was wacky because it was. He'd seen on the MRI done in August , leisions on my brain stem and T1 through T4, and those are areas that affect balance and the numbness in my feet. So all of that was a huge change in my MS progression. When I was first diagnosed, the neurologist I had then, said I was really lucky, because all of my MS was in my brain, not my spine. Not anymore..:::sigh:::
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Thank you. He said he'll be sending me to have blood tests done, next month; one for my Aubagio 6 month test, and two, some possible vitamin deficiencies. Then he wants to see me again in March He hasn't really decided how we should go further because he hadn't had much chance to research it the way he wanted. In the mean time, he wants me using my cane INSIDE not just outside, and, "Don't let your cat kill you!"No laughter ferom him. "Pets are cute, but I'm serious!" he said. "Don't let your cat kill you!" And he told me about a friend of his who was out walking his dog. The dog wrapped the leash around his friend's legs. His friend went down face first. And his friend was really messed up from the fall and was lucky to be alive! So, for now all I know is to not let my cat kill me, and maybe I'll know more after the hollidays.
I had a dog do that to me once while I was out running with her. She saw a rabbit and took off after it. Wrapped the leash around my legs but landed me flat on my back. Knocked the wind out of me and I just layed there for a few minutes trying to get my breath back. Speckles just looked at me laying on the ground with a look that seemed to ask "What you doing down there for??" I found a different running trail to take her on after that so I didn't have to keep her on her leash. If she spotted a squirrel or rabbit again she could chase after it without taking me out in the process. She got her upcoming later though when my Dad was watching her for me. She saw a skunk and took off after it. She and my dad did not appreciate the smell! She was hard headed though...She took off after 2 or 3 more skunks before she finally learned that they don't want to play with her.
Well, I know my cat is plotting against me because after 9 years, he still doesn't know how to use the stairs--he doesn't understand you don't go down one step then plop your fat butt down, then go down another step and plop your fat butt down . . .But I was telling my neurologist how I don't use my cane when I'm walking around the house unless I go into the garage to take care of my partner's kitten. The kitten thinks I'm a tree, so I have to use the cane to peel him off my leg.
Well then! CrazyCatWom that was quite unexpected I'm sure!🤗
So what signs and or systems do you have to watch for? When do they get checked again? And I hope he gave you something for your migraines!! 😂 Although LSD 🤔 😂 joking!!
Thank you. We went over my current meds and I think that's why he really wanted time to do more research on it. H's keeping me on Aubagio because that's been working really well for me. The leisions he saw weren't new (the contrast didn't light them up),. He just hadn't ordered an MRI to include as far down as these were, before. For the aneurysms, I was already on blood-thinners because of the brain bleeds and blood clots I'd experienced last year. So he wasn't quite sure what other meds he could prescribe for the current situation. (And he did think it was a more DNA thing for my brain bleeding so much). I'm scheduled to see him again in March, he wants blood tests next month, and he doesn't want me "schleping around microwaves" (his way of saying what my cardiologist did--"Don't do stupid things, stupid!"
I'm sorry you didn't get the report you thought you had. It's bad enough to have MS. Sorry about the aneurysms. What do they do for that if anything other than blood thinners?
I was just reading treatment from the Mayo Clinic, and theirs don't look much different than my neurologist's--use MRIs and MRAs to see the sizes and locations, and make a predictions on the possiblity of ruptures, determine which are most likely to rupture snd schedual surgery. So far, I just can't see anything else a doctor can do or I can do. But I'll keep digging!
I’m sorry for your bad news 😞 There’s a silver lining to finding something that could be fixed, if it ever comes to needing it, and the procedure for that isn't bad!
Those cute little rugs/mats in the kitchen are murder for those with balance issues. If you have some to get rid of, just toss, don’t donate! Maybe pass on the eggnog next week 😵
I didn't think to ask my neurologist, but I'm on the scale where I have to use aids to walk. (I use a cane mostly,but have used a walker--especially when I was first released from the hospital last year. But I've been tempted to go back to the walker, the way my balance has been lately :(.
I’m not sure if it’s a good idea or bad idea to know the number. Last time I asked, I was at 6.5. I am very unstable so I depend on my walker. Safety first!
Sorry you didn't get the results you thought you had. Hope you get the aneurysms taken care of though. I knew two people who had undiagnosed ones and just literally dropped dead when the aneurysms burst. Be very careful with those. We want you here for a long time to come.
Thank you. I was just thinking today, with my brain bleeds last year, I couldn't see them coming. And after reading the EMT's report on the hospital's patient portal, I realized I shouldn't have had a 52nd birthday. So it's just terrorfying me to now KNOW these things are like swinging axes over (or inside, rather ) my head.
You're very brave in that you are approaching this with a positive attitude. Please take good care of yourself and follow your doctor's orders, my friend. Gentle vHugs, vSmiles, and prayers to you, CrazyCatWom
I'm so sorry that the news wasn't as good as you thought Did he have a plan for what to do next because your symptoms have changed so much? Hugs my friend.
I am so sorry that you are going thru all this!!! What amazes me is you waited all this time for his 'feedback'. THAT IS FRUSTRATING!!! I have learned that I just go onto my patient portal and print out my reports from tests. I HAVE TO call my Dr. and say 'showed my heart is enlarged' does that concern you? OH ...I have an aortic value 'root dilation' where the aneurysm gets big and then 'disappears'??!! I want to encourage you, but at the same time not MINIMIZE what you are feeling!! I have a friend that has had an aneurysm in her brain, and she seems to be doing great! My concern for you is that it is affecting your vision and balance, and YOUR DOCTOR 'hmms' that and says that you have leakage ... You need to see a Neurosurgeon ASAP!!! Not to alarm you AT ALL, but why wait! i know this is a LAUGHABLE and want to hit myself for saying it ... try to keep your stress to a minimum, but get on the phone ASAP with someone who can give you an answer than just 'oh yeah, (months after finding) you are experiencing all these 'psychodelic' things because of this! Did he give you anything else? Any URGENT next steps? I know i am sorry doesn't work, but i FEEL your pain and will pray that you get answers NOW! please keep updated!
I admire your attitude and courage! It's good your doctor is going to put in the time to research (and probably reach out to colleagues.) Give him some time to look into this and then call. Nothing then? Another week and call. Keep it up. You know what they say about the squeaky wheel! While you're waiting for news try to relax and enjoy the season. There are some good movies on now! Put a fuzzy throw on your lap which will attract your puddy who will curl up and keep your lap warm! Take good care of yourself.
wow sorry about all that info at once ...so what is the options do you do now ...hope all works out good for you...love and much happiness ....take care and keep asking them questions that you may have on what they are saying so you understand them really good ...
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Then I told him about the headache that had me seeing psychodelic colors and distorted faces. He said I'd experienced a migrain! That really surprised me. I used to have migraines when I was a teen and in my early 20s, and those had meburing myself in bed with curtains closed to make it really dark, and couldn't even stand it if my cat jumped up onto my bed, not an LSD trip! He said gently, "No, it was a migraine." And h said with blood from the vessles leaking into my orbital socket. it would distort my vision. Okay, so more good news? How about finally getting to talk about the MRI done back in August and hadn't gotten to talk to me face to face about . . .
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