Health Problems

I was in the ER for about 5 hours and now I'm being admitted for another kidney stone. This one is 7mm. The pain is real AF. Took forever to get the pain under control. And this was supposed to be my off week for chemo.

C Cynical .

I'm diagnosed MS, but it's still a wait and see if I have a relapse to see if it was that or ADEM (which is a short duration monophasic one time MS in response to a virus or infection). From what I've heard it's more common the further north you go. Start taking vitamin D as they think it's related to low vitamin D. Apparently it's really rare in the south. Even in the south I was told to take 1,000 to 2,000 ITU of vitamin D a day. You should get your vitamin D checked and they might check to see if you are using the vitamin D you have. Most of the relapse I read about happen in the winter or high stress periods. Get sun, take vitamin D.

If it's MS I have a "minor case" according to the only MS specialist doctor in the state. The other neurologist at the clinic thinks it was ADEM. So I'm not much help. I had singles at the time which was the idea behind it being ADEM. Used to be called the vaccination disease, but I never say that as people are cookoo about vaccines now. Apparently vaccines kick it off in kids at times and stuff like chicken pox. Only recently has ADEM even been considered for adults. The Mayo clinic sent me some info about studies in Sweden and they followed people with MS for years and years. Apparently they have that ability with their medical system and apparently they had people taking no medication for it without a relapse for 20-40 years and then it was reclassified ADEM.

In my first attack I didn't get spasms and still don't have spasms. I lost all strength in my left arm and had difficulty walking. The left leg would move ahead and then any weight on it would cause it to buckle. I could move my left arm but couldn't pick up an empty coke can. It still was pretty minor in the grand scheme of things. Then wake up one day and it went away.

They have a couple of types of MS. One is the one most people know of. You go a while/long time with no attacks and then one day bam a replase. After the attack it gets better to a degree if not entirely. The other type is progressive and you just degrade over time and most of the lesions are around the spine and not the brain.

For the less severe MS there's a drug now you inject (3 days a week or 7 days a week depending on how much you or your insurance wants to pay, the 3 more expensive) and people have gone 15 years now without a replase taking it. I think it's only been out 15 years.

According to the Cleveland Clinic which is the big MS clinic in the US there's a big problem with misdiagnosed MS at least in the south.

Stress is the big kick off of a relapse apparently. But from what I've read on differnt forums a lot of people had various issues for years before they had an actual attack or were diagnosed. So I don't know.

Try to find a neurologist that is a MS specialist at a MS clinic. A LOT LOT LOT of doctors will blame anything and everything on MS because it's convenient.

The only test I'm aware of is a MRI and a lumbar puncture (spinal tap). I'm still in limbo. I had a few lesions but they've all resolved (went away). The lumbar puncture they grade by number of bands. 5 is MS and less than 5 is not MS. I had exactly 5 but they tell you in the report for the lumbar puncture if you've had diabetes for more than 5 years it can skew the lumbar puncture results as it will show higher than it is due to protein in your spinal fluid. Had diabetes for 43 years.

I knew nothing about MS but like a lot of people I just assumed there was a test for MS and that was it. Nope apparently not. A lot of wait and see. But I think there's 14 different medications for it now. Some are kind of "out there" like interferon that impacts your immune system and lot of other stuff you take once every 3 months for some of the more didicult cases of MS. Other stuff like the Copaxone you take the injection every day or 3 times a week and have limited impact other than the pain of a shot that's more involved than taking an insulin injection. Read about a lot of people that go on for years and years with no issues, if ever. But it doesn't work for progressive MS. Just stops you from having a relapse.

All the neurologist I've had give the same test other than the MRI. Takes a few minutes. They check your strength in your arms and legs. Stand on one leg, then the other. Close your eyes and then they smack you from behind and see if you fall over. Then they push you on one arm from the side while still having your eyes closed to see if you fall over, then repeat on the other side. Hop on one leg, the the other. Walk on your toes. Walk down a straight line much like a DWI test. Check the strength in your hand. The toes one is apparently a big one. Close your eyes and spread your arms straight out in front, then to the side, back out front, then touch your nose with one finger on one hand, then put your hand out front, then the other, then put them to the side and touch your nose one at a time again. There are videos on youtube of the exam. Not much to it. I still walk a straight line every day like a MS test and walk on my toes just to check. The strength test in your arms and legs is pretty small. Doctor just pushes down on your arm/leg and see if he gets any resistance at all. First time I thought it was a real test of strength. I almost put the doctor against the wall.

Another thing I did learn. At least in the states they check one thing and one thing only for disability with MS. Clinic has two stripes a certain distance apart in the hall. They ask you to walk as fast as you can between them. They record it each time you come in. There's a scale of no issues walking = no disability, and goes down from there. Kind of odd to me that as long as you manage to wak between two points without a cane or wheelchair no matter how long it takes you're not disabled. Well there's a lot more to life than walking. But that's another issue.

I will say this, in my time with the doctors and researching there's a lot of things that initially appear MS like that aren't MS. That's why they start off with the really basic stuff like vitamin D, B12 and other test to see if your deficient in something.

Cynical said:

Anyone have any personal experience with MS? You or someone close to you, either works.

I'll try not to go into too much detail, I'm not looking for a diagnosis or anything, just wanted to get some "hands on" knowledge or info. Based on symptoms it's something my doc wants to explore.

There's a couple things that have started to become really serious issues in the past year for me. First one that freaks me out the most, is my hands get "spastic" I guess is the best way to put it. I just randomly lose control over my hands, as if there's a momentary disconnect between my brain and hands. It's either just a loss of control, or I'll get something like a spasm and lose control. A related symptom is tremors, I'll frequently get those now. Shit really freaks me out, honestly the scariest part of this whole thing, losing control over my body.

Back issues. I hurt my back pretty bad years ago, but most of my spine area has been an increased source of pain and other issues the past year or 2. I have balance issues sometimes too now, as if my hips and spine get out of alignment. I get all kinds of muscle spasms in my back as well, not just one area, I'll have entire muscle groups seize up and bring me to my knees. I have the spasms elsewhere, especially my feet when I'm in bed, my feet curl up as if the tendons are being pulled tight and the pain is excruciating.

Other shit going on too, but I don't feel like posting it on the internet.

I'm not returning to work this year, currently I can't drive, because I don't feel safe. I can't safely use tools or equipment, which means I'm effectively retired now if this is going to be a longterm thing. Not happy about that idea, I'm 3 months from being 40, and the shit affects my ability to play games, which happens to be the hobby I enjoy the most. Try playing puzzle heavy GW2 when your fucking hands are working against you.

Honestly MS I could handle. If a doc tells me I'm gonna end up like Stephen Hawking, I'll sit in the garage, get real stoned, close the door, and turn the car on.

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There isn't just MS or ALS there are a number of other neurological conditions/diseases that could cause these symptoms.

None of them are "good", some are worse than others.

Trying to self diagnose would be a disaster I'd just stick with MS. From the symptoms you're describing ALS seems pretty highly unlikely it really depends on your presentation. A good neurologist can rule ALS out fast.

Frenzied Wombat said:

My aunt has advanced MS-- she's had it for about 25 years. She can't walk or even feed herself really-- all her movements are totally spastic. She's not Stephen Hawking level-- she can talk, swallow food, and kinda stumble on her feet if someone holds her, but she is effectively wheelchair bound and can't manipulate anything with her hands. It's an incredibly sad situation all around and along with the MS she's gone nuts and become verbally abusive. Her poor son (my cousin) has to go by once a day to help her out only to have guilt and abuse rained down on him. I don't know what to tell you man, it seems like everybody with MS degrades at a different pace. Some of her friends in her MS group have had it as long as she has but have some mobility, while others are like her.. The best you can hope for is that you are in the "slow" group.

Really sorry to hear this man, how old are you?

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My neighbors MS got too aggressive and they had to X-ray treatment the fuck out of her spine as a last resort.

Think she's functional can walk still she's in some form of remission but there is some lasting damages I'm sure.

There are other things that can cause twitching. Not just other neurological problems. When I first saw the MS doctor at the MS clinic they did a lot of blood work. I have the list somehwere but I'm too lazy to look. I asked her how often it turns out to be something other than MS she said a significant amount just cause they get diagnosed at first by neurologist that don't specialize in MS or by some other doctor entirely. She mentioned B12 and vitamin D if they are really low can produce some of the symptoms. Boggles my mind why she refuses to take anyone not diagnosed with MS after she says a "not insignifanct" number of people were misdiagnosed. Only reason I saw her before being diagnosed was my other neurologist is in the same hospital group.

Well part of my reason for hating it, explained further.

I started my job at Raytheon and they had a PPO plan, with pretty good benefits, etc. We got pregnant under the premise that this was my insurance. We were about 4 months in when suddenly Raytheon announces they're ditching all plans for a HDHP/HSA plan for all employees. They'd toss $1500 on per year, rest was up to us. I already had one kid at this point, plus me (diabetic), plus my wife (mostly normal). When we had my kid, it was an emergency birth in my house. This included the ambulance/fire/police roll out, and going to labor and delivery at a shittier hospital than our first kid.

All said and done it was about $5000 out of pocket from me. The HSA paid for a little, but we had been using it for my kid who was getting sick a lot. Plus the maternity visits where we were charged every visit, plus everything else with me. It royally sucked. It took us awhile to pay it off, and we never really recovered since our HSA was basically zeroed out from that point. I paid a lot out of pocket, but conveniently below the out of pocket max.

Next year was another great story where they didn't tell us every year you had to re-elect how much you put on your HSA, I got literally zero communication about it. It was such a big issue in fact, that several months after the year started the company had to email everyone and tell them almost everyone didn't update this and weren't contributing. I don't usually look at my paystub so I didn't even notice - and an extra $100 here or there was kind of negligible. So then again, I'm in the hole with my HSA.

That one was my fault 100%, but it happened to a ton of employees.

So if I'm a bit bitter about HDHPs and HSAs, that's why.

Oh and btw - when I worked at EMC when we had my first kid on a PPO plan we paid $250 for the entire pregnancy. That included all prenatal visits and delivery. We had VERY GOOD insurance.

HDHP/HSA definitely takes some planning and management. I'd way rather have a PPO, but I'm making due with the HDHP pretty well. I had really good insurance when I worked for state/local gov and both my kids only cost me under 1000 for the whole pregnancy and birth and all that. I'm done having kids, so at least that's not a concern.

One tip, if you have big doctor bills to pay, ramp up your HSA contribution and pay them from the HSA. It comes out pre-tax and lowers your taxable income at the end of the year. Granted, you can write off doctor bills paid out of pocket, but it's more hassle.

sleevedraw said:

The people who get screwed by HDHPs are the moderate consumers; those who spend, say, $1-2k a year on health care and would be able to hit the deductible for a traditional plan but not the HDHP's deductible.

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This is not true in my case taking into account the difference in monthly premiums and tax deductibility of the HSA contributions (at least if you're maxing them, which you should). The HDHP is categorically cheaper as long as I can manage my own cash flow.

Depending on your premium structure YMMV.

Any suggestions on going to a pain management clinic. It's been bad for a while and has take a sudden pretty sharp turn. It's not really fun moving your hands and legs and it feels exactly like your skin is ripping in places. I really don't want a clinc/doctor that shovels stuff at you. My sister went to one after she had a wreck, then had another wreck while she was bandaged up in the neck from surgery (both not her fault, she had to take all sorts of drug test to finally clear it all to make sure she wasn't on drugs and such). Anyway they started slow and did numerous test. From what I've hard it's pretty hit or miss.

Is marijauna an option?

Noodleface said:

Is marijauna an option?

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I have a marijuana prescription. Taking it also means losing all potention income for the most part.

It's always an option. Just looking for what you looked for in a pain management clinic/doctor. The prescription just came from the MS doctor and she was done with it. Just looking for other options. The clinics have sprung up like crazy around here now.

Call me scarface now. Spent part of the day in the ER. got a gash in my cheeck where my skin split open for no reason. They closed it with some of those stick on things.

Guess I should give you guys an update after saying I had a 7mm stone. This has SUCKED. I was in the hospital for a couple days over the weekend at UMASS Memorial where they blasted the stone then removed the chunks and placed a stent.
I have never felt pain like trying to hold pee with a stent in place. Excruciating ball pain immediately and then you just piss all over yourself no matter how hard you try to hold it. Every time I stand up I go straight to the bathroom...or else.
I basically have to pop oxycodone every 5-6 hours to even be able to function like a normal human being. I go Monday to have the stent removed and I can't wait.
I'll also being taking a break from chemo now until the beginning of August. We've got a couple family vacations planned that I am not missing. Our family morale seriously needs some good times right now.

Kuriin said:

I am absolutely shocked they admitted you for a 7mm kidney stone. While nothing to scoff about, that just seems absurd. The only thing I can think of is that you had some serious hydronephrosis, -- severe obstruction. They likely performed lithotripsy on you.

-- And, while not personally ever having a stone (please drink LOTS OF WATER), I have heard from even women that stones are worse than labor.

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I went to one ER in the Thursday afternoon around 230. Later in the evening I attempted to have them transfer me to a hospital closer to my house bit that didn't happen. They shipped me to a different hospital about 40 minutes away from the house. It was 1130pm at that point and I knew it was a good hospital so I just said fuck it and just stayed there.
The pain was horrible all day Friday and didn't get better until about 2am on Saturday morning. They were going to do the lithotripsy on Friday but it never panned out so they did it first thing Saturday morning and then sent me home.
I have been drinking constantly as the pain meds completely block me up if I don't. Constipation pain on top of stent and ball discomfort is no joke.
I had one older nurse tell me kidney stones are worse for men. I imagine it's from the ball pain. Try and hold the urge to pee and forget it. Instant excruciating pain from my bladder to balls. I cannot overstate how bad the ball pain is. 0 to 7/10 pain in about 3 seconds.

I forgot I recorded this. This was my roommate on night 1. Throw in some loud snoring and random growls then imagine this shit every 15-30 seconds for 7 goddamn hours. I wanted to smother him in his sleep. My nurse gave me earplugs which helped at least get through the night then I told them find me another room. 15 minutes later I was in a quiet single room all alone. It was like heaven. lol

I have absolutely horrible luck with roommates. I've had violently detoxing alcoholics who fell through a plate glass window (needed 3 security guards and 3 nurses in the room at night because of him), hallucinating people that need to be restrained to their bed, I've had more than one roommate threaten to beat up and/or kill their nurses. Just insane shit. Now I don't wait to demand being moved. Hospital stays are bad enough without dealing with shit like that.

pharmakos said:

Hospital stays with random roommates are awful. Grats on the single man haha.

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Yeah when I was waiting for an OR for my appendectomy some years back, I was stuck sharing a room in the ER with a guy with a kidney stone. Nonstop moaning and crying, meanwhile I'm sitting there with appendicitis and a slipped IV that's pushing fluids subq so I have a giant swollen lump on my arm (didn't realize thats what the arm pain was until the nurse came back in and got all wide-eyed when she saw it) not making a sound and I was not feeling sympathetic to the guy at all.

In retrospect, I was the luckier one of the two of us.