A Mystery Solved!!

[CrazyCatWom]

In early 2018, I wound up in the hospital due to brain bleeds. I have always been frustrated about that time because my memory of it has either been completely blank--NOT fuzzy. BLANK--or sureal, so I don't trust various snipets I can recall. I know I halucinated a few times. So how could something not just be something I halucinated, right? Okay, so one of these questionable snips wassomeone showing me a print out of a graphic depicting where the bleeds were in my brain. I vaugley remember this same person saying how he considered one in particular, interesting: the one based at the bottom around the jaw line. Okay, I think I said that explained the one that felt like a steel rod had beenjammed UP into my skull! Okay, but one of the biggest mysteries for me was a man saying a diagnosis was of course, MS and he felt the brain bleeds were related to MS. Saying it was "extreamely rare, hemoragic . . . . (really long

word) Multiple Sclerosis. Or Bleeding MS."

So, surely THAT was a halucination, right? I've googled "Bleeding MS", and never got any results.

Well, last night I was scrolling through the patient portal of the University Hospital where all of that had taken place in 2018. I was looking for a document my current neurologist had written early in our dr/patient relationship. He'd mentioned that I'd been moving away from Relapsing Remitting MS into Secondary Progressive MS. I wanted to know the date he wrote that so I could ask him about it in our upcoming appointment.

As I was skimming through the first few neurology documents, something really jumped out: adiagnosis of the brain bleeds--a very rare condition--Hemorrhagic Leukoencephalitis multiple sclerosis!

So it was REAL!! It wasn't something I imagined! I really DID have a man tell me bout "Bleeding MS", and that man was my current beloved neurologist! So a mystery was solved for me last night. And I now also understand why my neurologist asked me back in November when I'd talked to him about the email I sent him regarding the blinding headache I suddenly experienced hauling a 50 lb broken microwave to the curb, was there anything about the brain bleeds I might have heard when I was in the hospital? I started to tell him I'd heard something about "bleeding MS". But I have already said really supid things to him before, so I wasn't going to embarsass myself again with him. I just said I didn't trust the memories I have from that time.

So a mystery has been solved!

Now, maybe I can ask him him if HE was the one in the hospital doing a test where a device was run along a nerve in my calf or shin and it made a sound like a thunder storm!

[hairbrain4]

It's always nice to find an answer to something driving us buggy! Glad you found out you weren't dreaming. I've never heard of it either. Sorry, you are going through it. I hope there is something they can do for you.

[twooldcrows]

wow now this is something to get down to business about with the doctor for what has been done about these bleeds ??? ...if he won't talk about it find someone in the office that can explain to you more about it ....take care and find out more to help you understand for you are the patient and you have the right to know for you have been wondering about it...please be careful....

[CrazyCatWom in reply to twooldcrows]

Oh! I'm on ablood thinner, and I think in the end this was why he wasn't going to put up with me NOT being on a DMT any longer,. Monitors me closely and does require Iget an MRI, and see him at least every six month if not more, though he could've just put me on a once a year rotation. He never hesitates talking with me about anything. I think maybe he tried back in November, but we were talking via phone, I'd said I didn't remember or TRUST what I remembered, and he'd get to be more indepth at our face-to -face appointment.But that appointment was taken up with his usual MS exam, and giiving me the results of the MRI and MRA he'd ordered. Those were the ones that he told me about my several tiny anurysms he wanted to keep a very close eye on. And if they got much bigger, he'd send me over to talk with a neurosurgeon. That all was, relative. So when I ask him about what he wrote in his 2018 documentations in our upcoming video apointment, he might even start thinking, "Finally!"

[greaterexp]

I hardly know what to say, except, “wow!”

[rjoneslaw]

it's you were able to find the answer

[pamgarner]

wow!just when you think you have a handle on ms,KAPOW!something new,it can all be so complex and a mystery.i truly hope you feel better

[CrazyCatWom in reply to pamgarner]

I already feel better because I'm really NOT crazy except for cats! However, I still halucinated that I was protecting the nurses' station from criminal invasion, just using my cane. Abd NO, there was no classic locomotive on display on the street in front of the ICU where I was. Those were halucinations! >D

[pamgarner in reply to CrazyCatWom]

what an experience gheezz!

[bxrmom]

Glad you found the document with the info you were looking for! Make sure you print it out (if you haven't already) and bring it with you Good luck at your appt and keep us updated!

[CrazyCatWom in reply to bxrmom]

Oh, yeah, I printed up copies. But my appointment will be a video appointment. I at least get to stay in my PJ bottoms and remain barefoot.

[bxrmom in reply to CrazyCatWom]

At least you will have it as reference in front of you when you are talking to them Being in pj bottoms and barefoot is an added bonus

[CrazyCatWom in reply to bxrmom]

Yeah, but I just thought of something . . . if I'M in my PJ bottoms and comfy for the video appointment. who is to say my neurologist, who is working from home, isn't also in HIS PJ bottoms and only wearing a button-down shirt and tie for the purpose of his computer's web cam?

[twooldcrows]

so glad he is listening to you more ...keep up with all of this so we know you will be okay ...was worried for awhile there for it didn't sound very good ...stay safe and always ask lots of questions until you know for sure what is going on ..and again ask why you are having hallucinations ...take care of yourself...ask questions when you don't understand ,i always say to say it in my terms...love and much happiness..

[mrsmike9]

I know what it's like to be completely blank over a period of time. When I had 2 grand mal seizures back to back I missed out on an entire month. I remember nothing. It's odd having a space of nothingness. That part I get.

If I was having brain bleeds I think I would be totally afraid all the time. You sound pretty relaxed about it! I am glad you found information on it! Line up your questions!

[CrazyCatWom in reply to mrsmike9]

I'm relaxed, relatively, about the brain bleeds because I had no control over them. I'm trying so hard to improve my health with diet and exercise, but the damage is done. I will never drive again. My photography career is over because my vision was damaged so bad. But, as weird as it sounds, I DO see a positive to winding up in the hospital because of them. I'd been trying for over 5 years to get in to see a neurologist if not my old neurologist. But the primary care doctor BCBS asigned to me outright said "I don't deal with Multiple Sclerosis." And couldn't find any records that I had MS. My records had been lost in a warehouse fire in 2005. So to have a radiologist look at the MRI that had been done when I was rushed to the University hospital ER, and note the 3 brain bleeds . . . but also that the entire left hemisphere was WHITE with "demylinization more indicitive of MS"! That meant the doctor who STARTED the UH's MS clinic (who,btw, was my old neurologist, I found out!) was called in to consult. He saw the MRI, and said, "YES! That is MS!" He then went back to the neuroscience center, found his colleague--a fellow MS specialist and told him there was a woman in the ER he really should see. And THAT neurologist became my current neurologist--the one who wouldn't put up with me NOT being on a DMT anymore. The one who says I should never appologize for asking questions. Who says he really understands WHY I'm scared over headaches and will do everything he can to help me rebuild my health. So getting a Dr like that, is, to me a huge positive result of blood vessels breaking in my brain.

[mrsmike9 in reply to CrazyCatWom]

Wow! I'm glad you can see a positive side to it, and I can see the trail as well as you explain it. It did lead you in the right way!