Health Problems

Borzak

Borzak

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Spinal tap today. I have a really bad feeling this is not going to come out good. They referred me to a doctor that has 200+ MS patients. The MRI was good news tho so who knows. Apparently if you go 2+ years with no new lesions that makes them question MS. I've been 2+ years now with no new lesions and the ones I had originally are reducing in size. I guess the doctor thought the symptoms warranted it, or was just tired of me.

Blah.
 
Borzak

Borzak

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My protein in my column spinal fluid was slightly elevated. That's normal for people with MS and diabetics. The longer you have been a diabetic the higher end of the scale you wind up. Been one for 40 years. Still no closer than yesterday. They have another test more specific to MS to do which will take several days. Not feeling good.
 
Borzak

Borzak

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Get more confused everyday. Now my Dr. tells me even if I have X number of bands which represent the protein from the lining of your nerves that is not a certain diagnoses of MS.

If you had asked me 2 years ago before all this started I would have said yes there's a test for MS, but apparently not. It's a lot like reading the tea leaves apparently. Most neurologist want to go from have you had an "attack" more than a year from the first, but progressive MS doesn't have attacks at all. Also my MRI ruled out the other half of their goto diagnosis. X number of bands and new lesions in the last two years. I didn't have any new lesions.

But I have so many symptoms that go with it. Just getting more aggravated and blowing off steam more than anything. Had numerous doctors tell me they weren't really interested in looking for anything else once they see ADEM on your chart, I guess until the day I die that is going to cover everything.

I did learn something new, lumbar puncture doesn't have to be at the very bottom of the spine. They did mine pretty far up, about the bottom of my rib cage. Don't know why I always thought it was to be at the very end.
 
Borzak

Borzak

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Another day, more confusion. They sent my test to the Mayo clinic to be done which is odd. My doctor sent them this morning with a note attached, which is really odd for a Sunday.

All my MS resuls were normal except one out of 9, in the note he attached he said he thinks that is possibly left over from the ADEM which is basically really intense but short duration MS. The rest were all normal. I need to find the results to compare it to of someone who actually has MS.

My doctor said specifically he thinks it's not MS this time and said it's leftover results from the ADEM.

I have an outside idea of what it might be and would account for the first case of shingles as well. But I really don't want to throw that out.
 
Ambiturner

Ambiturner

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I know you're not getting too many responses since this is definitely way over our heads and we don't have much to contribute, but keep us updated.
 
Borzak

Borzak

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Apparently it's over the head of most doctors as well and even neurologist. After my first MRI when they knew I had lesions and I looked like someone who had MS for years. Difficulty walking and no strength on one side etc..a neurologist told me it was from being a diabetic. Errr what lol.
 
Borzak

Borzak

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Just blowing off steam. Neurologist sent it off to a MS specialist. Neither of them think it's MS for a variety of reasons. The MS specialist has 150+ MS patients and is region wide apparently and came recommended by the MS society. She recomended (I only talked to her via phone) that I see their internist or another internist that's closer and possibly look at something that would depress my immune system that comes and goes since it's not common to get shingles that kicked the whole thing off at my age.

I've had this idea for a while. My symptoms that I have that don't have anything to do with the MS.

Incredible fatigue. Sometimes I get very tire walking to the other end of the house. I sleep sometimes 20 hours a day.
The shortness of breath.
My B12 was off the scale high 6 months ago, now just high above normal.
Abdominal pain that never goes away, like being squeezed and it's not my stomach
constipation
I have blood red "dots" on my chest and abdomen.
Dry skin, not normal dry skin as lotion doesn't touch it. Mostly my nose, ears and neck.

I have an idea but when I say it people think I'm crazy so I won't here.

Just blowing off steam. The good news is the weak blood pressure medicine the cardiologist gave me has dropped my heart rate to 70-80 all the time and not really impacted my blood pressure which is always on the low side for the last 40 years. It's also prescried for angina and heart rate.
 
Woefully Inept

Woefully Inept

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Goddamn the last 3 days have been a roller coaster. My grandmother's kidneys have stopped working. Her blood vessels have started to calcify. She had a dead portion of her bowel removed due to lack of blood supply. She went septic due to her kidneys. Her BP was SUPER low. They had to intubate her. They started her on 24/7 dialysis because the standard 3 hour dialysis would have probably killed her they told us. They were concerned with her brain activity due to her not becoming alert after weening down off drugs. They did a CT Scan yesterday and an EEG today to check for brain activity. I didn't hear the results but they decide to pull her tube today after she was at least able to wave her hands when the doctor asked her to. Before I left her eyes were wide open and she was talking and responding to us. Much of it gibberish because she was still very groggy and didn't have her teeth in. I did catch her trying to say she was sorry (lol) and told her to knock that crap off. She did say I love you back and I assume she wanted me to give our son a kiss because I understood his name.
God this post is such a mess but that's what my head feels like. We know she's not out of the woods yet and has a long way to go but I at least feel like I can breath again.
 
Borzak

Borzak

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Sorry to hear that. I don't want to go thru that. I know it sounds bad to say I've been lucky that everyone in my family has died a quick death. That sounds incredibly tough.
 
Woefully Inept

Woefully Inept

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Well thankfully at this point it shouldn't be more than a few days. If I could press a button and let her finally rest I would press it in a heartbeat. She was a fiercely independent woman and this is not the life she would ever want. She raised my brother and I from 6 and 8 years on. I am just so happy she had one full year with my son. She glowed every time she held him, fed him, or had the chance to put him down for a nap. She always had to take care of everyone else before herself. I found out that she had be eating salt and vinegar chips and applesauce as a meal. At that point we all went and her a bunch of easy to prep food. Ah man I'm just glad she won't be suffering much longer. Tomorrow morning they're going to start full comfort mode. I feel a bit more at ease when they start that. It isn't much but I'll take any peace of mind that I can get right now.
Now off to Screenshots. I got some fucked up everything else to look at!
 
Woefully Inept

Woefully Inept

Karazhan Raider
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I'm sad and relieved that Grams is no longer suffering. She passed earlier today surrounded by family. I am completely and utterly exhausted now. Can't wait to put the kid down for bed tonight so I can just shut off.
 
pharmakos

pharmakos

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just finished up my third cycle of chemo on friday, and this weekend was my first really really rough encounter with nausea/vomiting/diarrhea since i started treatment. i've been fortunate so far, because cisplatin (the chemo they use for testicular cancer) is supposed to be one of the roughest ones in those regards. lots of antiemetic pills and medical marijuana have saved me up til this point. but holy shit, i can't even imagine going through this 10-20 years ago before they really knew how to treat the side effects of this stuff... three straight months of feeling like this and i really think i might put a bullet in my skull first.

finally as of this morning feeling like i can actually function a little bit. didn't eat for about 48 hours there, managed to get down 5 chicken nuggets this morning without puking them back up.

check your balls for lumps on a regular basis, kids, and if you find one take it seriously. if i had gone to the doctor when i first noticed the bump, instead of hoping it would go away, i would still have both testicles and would have just had to get some light radiation therapy.

my fourth/final cycle starts on may 9th. the docs say that this cycle was worse for me because the chemo is starting to build up to higher levels.... so yeah, fourth cycle should be even worse. still, i need to consider myself fortunate, because i see a whole lot of people at the infusion clinic having a way worse time than i am... (helps that most days i'm the youngest patient there, but still...)
 
Kuriin

Kuriin

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If you get vision problems, you need to contact your doctor ASAP as that is overdose. Hopefully it won't be too much of an issue.
 
Mrs. Gravy

Mrs. Gravy

Quite Saucy
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My mom just finished cycle 2 for sm cell lung cancer and she told me yesterday she had blurred vision. She blamed it on her anti emetic, but now I'm worried. She's getting Carboplatin and Etoposide.
Thank you for the information....even though it was meant for Pharmakos.
 
Borzak

Borzak

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My dad has been having problems with his sinus and breathing etc..He went to an allergist today. They said they had never seen anything like it. He had a reaction to everything they put on him for the test including the control. They drew blood after that, no idea what they do now.
 
Slaythe

Slaythe

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Borzak_sl said:
My dad has been having problems with his sinus and breathing etc..He went to an allergist today. They said they had never seen anything like it. He had a reaction to everything they put on him for the test including the control. They drew blood after that, no idea what they do now.
Click to expand...
I don't think the control part applied to me but I've tested allergic to everything I've ever been tested for. There isn't a single day of the year that I don't feel better after taking an anti-histamine/decongestant. Rag weed season in the fall is the worst though.
 
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