Okay I'm going to try to write this post one last time! I've tried three times before only to have it disappear as I'm typing, grrrrr!!
Anyway, The first virtual appointment I had with my neurologist two weeks ago, was to tell me his assessment of my most recent MRI. He said my brain looks good. My annurysms haven't increased in size, so he doesn't see a reason to send me over to a neurosurgeon right now. But he still wants to keep a close eye on them. One may be leaking, likely causing the psychodelic images I said I'd been experiencing with my last , headache though he didn't see any blood.
Now there was more to yesterday's video appointment, and this time there were some not so good stuff. It was the first appointment I've had in a long while that wasn't primarily focused on headaches and anurysms. We talked about MS!
As I mentioned in my post yesterday, the first part of the appointment was me updating my neurologist on all my symptoms old and new. And one of the things that really showed how closely he was listening to me. For example, when I was just rambling about what I thought was somewhat unrelated--how I'd been grilling some salmon filets last Sunday, and I singed my arm accidently. That prompted him to ask if I've been having more issues with my hands! Then we're on to me whining about other things my body is doing with MS. And with everything he'd ask questions.
With all those questions he then wanted to talk about his medical opinion of my progress with MS:
I am no longer Relapsing Remitting. I am now Secondary Progressive. He's felt that since April 2018. But he said there are two levels of Secondary Progressive. However, he said he hasn't seen me reach a plateau, and he's not sure Aubagio is doing as good a job with my MS as I think it is. While I'm used to him sayihng, "I want to see your brain," He said this time, everything but the swallowing problems, were spinal. Problems with my hands, bowl and urinary issues, the yightness I felt around my waist. the weakness in my legs--and the one that concerned him the most: how quickly my balance has deteriorated since he saw me in December. He wants to see my spine now. I haven't had a spinal MRI since April 2018. So he's going to order the spinal MRI. He wants another blood test, and for the swallowing problems he is going to refer me to a Speech Pathologist.
So things should be busy in the next few weeks.
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CrazyCatWom
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I have had my whole spine done except lumbar. My last relapse i lost use of my legs and i was supposed to get an L spine MRI but then lockdown happened ....
Let us know how it all goes. ๐๐๐ it goes well.
I'm not sure. My neurologist just said he wanted an MRI of my spine. It does kinda sound like an L spine since he was really concerned with what was going on with my legs.
It is pretty unnerving (yeah) that you have all this going on, CrazyCatWom However, you sound like you have a neurologist who is giving you the care that you need. Thank you for not giving up on post to this forum. Keep Smiling
I used to jokingly say that the warranty runs out at 50. You know how when a warranty expires, everything breaks? Well, I guess when I turned 50 in 2017 my brain REALLY broke with my brain bleeding which just goosed my somewhat dormant MS. :/
My warranty ran out long before 50, CrazyCatWom Try to get replacement parts for something that is over 50 years old! At least I can say that I have logged many 'miles' that I am proud of! Keep Smiling
Well I can tell you that speech therapy for swallowing is the easiest therapy you can have. Itโs easy and it works. I wish Iโd. Kept the number of my therapist because Iโm having a little trouble again.
Prayers with you and MRIs. I donโt do them well but I just had lumbar and hip MRIs done in the last month. Prayers going up.
I hope it helps correct my problem. I'm tired of my partner saying I have COVID 19 every time I'm caughing because I swalloed something wrong. And then like the other night my mouth dropped one of my meds in my water bottle when I was trying to take a swig of water to wash it down. I couldn't fish it out because it stuck to the side. I just had to wait for it to desolve and drink all the water.
Sorry you are having so much trouble but it sounds like you have a good neurologist. My warranty ran out at 50. That's when I was diagnosed with MS, it was Happy Birthday to me in 2005.
So sorry for you. ๐๐ป๐๐ป๐๐ปGlad you kept trying. It happens to me, also, the disappearing act. Sometimes I go away and try again in a few days. Iโll be fretting for you, and praying for you.
I am glad that he really listened to you. That is a sign of a good doctor! But I AM sorry that there could be advancement of your disease. So sorry. Letโs hope you plateau. Praying for you. Kelly xx
It does sound like you have a good doc. It's been 2 years since your last Cervical spine MRI. If you had increased issues they could be based there.
If I could make a recommendation regarding your swallowing issue. If I were you I would request a barium swallow test. There are 2 reasons why. 1- not everything is MS. After 8 months of treating my swallowing issues with Neurologist he ordered the swallowing test it showed I had stage 4 throat cancer.
2-It will show what part of your throat is not working properly.
I'll keep you in my prayers ๐. I hope everything goes well for you.
Yeah, that was where my neurologist was going when he was wanting more specifics about WHAT I was having the most trouble swallowing. He said liquids were most likely MS. Solids, though might be something else.
I wonder if these video appointments are making doctors focus on us. All they can see is our faces so there is nothing else to distract them.
So glad he listened and really heard you. That being said, it must have been frightening to hear what he said! Perhaps it's not as bad as he thinks and we will pray the spinal MRI shows that. Let us know!!
You are probably right, though he couldn't see me. For some reason my camera didn't work. He could hear me, so I said he was better off not seeing my ugly mug. But seeing his face added to the tone of his voice, I felt was more evidence that while he may not be cuddly, he really does care for his patients.
Prior to my brain bleeds, I knew my MS had awakened and was getting worse. I had to quit my cashiering job because of it. I just couldn't get in to see my first neurologist, or ANY neurologist because all of my records my first neurologist had put in storage when we'd lost contact, went up in flames. But it was disconcerting what my current neurologist was saying. I don't think it was froghtening, though, because one of the things I really, really like about my current neurologist--he never dances around his thoughts on the subject of my care. He is straightforward, includes all the information he has. And if he doesn't have the info, he says outright he doesn't but he's going to find out, and when he does he will call me ASAP. I just wish my primary care dr was more like that. She drives me nuts without telling me WHY she is ordering this test or that I see that specialist . . . So I'm left to wonder what she thinks I may have and worry.
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Finally got my referral 
MS and Hydrocephalus with shunt
Diagnosis
