Health Problems

Borzak said:

I dunno, the last neurologist a MS specialist said to keep going to other doctors since none of the symptoms I have had have nothing to do with it. Shortness of breath, fast heart rate, keep getting infections one after another. Sounds more leukemia like to me after seeing the red blood cell stuff.

She's not a definitive of "it's MS" either. Personally the ADEM which in response to an infection/virus kind of fits even more now that I have had infection after infection. A lowered immune system would kind of fit into that and kind of explain why I had a shingles flare up to trigger it.

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Shelly had shingles a month ago which lasted 2 weeks. She was in terrible terrible pain and it looked like someone poured acid on her underarm and back. Thankfully I caught it on the first night she was screaming in pain and looked it up and she got on antivirals quickly.

As for heart rate hers has been spiking to over 160 bpm randomly and they said it isn't related to MS and still in process of getting testing done( dye test is next ) but I 100% think it is related. She gets shortness of breath and infections as well. She sounds just like you.

She is however having the exact same result from doctors. They just look at her and shrug and say it isn't related but have no idea what is causing it.

MS only attacks nerves which have a myletin sheath, like muscluar, lower intestine etc...There is no myletin to strip off nerves of ones that go to the lungs or heart.

After doing some research today anemia would account for the symptoms I have and the blood work which always shows below normal amounts of red blood cells by number and volume.

Every doctor I have seen in the last 2 years has said the same thing. Something happend when I had the corticosteroids. Not sure if they will cause you to lose mass amounts of iron or shut something else down. Every neurologist I have seen since the first relapse has also said the same thing, they can't tell I have a demyleting disease (there are others like lyme disease) from all the test like walk one foot in front of the other, never have a muscle weakness, hope on one foot, all kinds of stuff, they all say you don't have MS for years and years and not have some physical impact.

Guess I'll look into anemia. One study showed that those with anemia also had high B12 since the B12 isn't being used in conjunction with iron.

Who knows. Lab right here I can have the iron test done.

She takes 5000 mcg of B12 a day as injections were like $50 a shot. Her issues happened after steroids as well, a relapse of everything. She is worried of developing neuropathy but her B12 was low.

Also edit-She MS doctor(s) said the same thing which is why there is heart tests now scheduled but I have seen the spikes clear as day on the finger sensor I bought her where she is doing X thing then nearly passes out and stick it on her finger and it shows 80s blood oxygen saturation and 160bpm on heart then in 3 minutes be 100% in normal range. The thing is in our research which was extensive both for the disability case and just trying to figure out what is going on we came across many others with MS who also have the exact same symptoms as her, you and others.

What I am getting at is just because they say it can't or isn't MS or related somehow hasn't convinced us it isn't. We wish we knew a way to make it better cause it scares the shit out of her when it happens and she literally feels as she is dying for a few minutes then it is gone. The biggest issue is it is happening 1-2 times a day now and as far as that part is concerned we still have no answers.

I think i'm going to find a PCP and ask if i can try out some adderall and xanex. I have about 80% of the ADD symptoms and sometimes get social anxiety. Anyone see any problems with this plan? I've never been on medication or really had a doctor.

The biggst thing that confounds the doctors I have seen is all my issues take place on both sides of the body at the same time, unlike MS. It's very rare in MS and it has to be a giant lesion on the spine to affect both sides. I have a strange feeling in both hands, but only on one side - the same for each hand. I have no outward signs that lead to MS at all. In fact the MS specialist said she found it hard to believe that I could walk, when she told me that I hopped around on one foot and when she asked me to walk between X and Y as fast as I could to time it, I made a hop skip and a jump. She said "Now you're just showing off". Well.

We had a long conversation about loss of balance. I wanted to know would it be sudden or over time. She said it wouldn't be like a stroke. I was concerned since sometimes I am on a 4" wide beam working, still. When I asked about heat since they say some MS patients are really impacted by it, and she said not unless I as having issues. I said "Good because some places I work they spray with steam to keep it cool". She looked at me and thought I was full of shit, nope if it's glowing red they can't spray water on it, it would fail instantly. So they spray it with steam and I measure it. She thinks I'm crazy. I left and my mom talked to her for a while and apparently she kind of waffled on the MS diagnoses, my mom showed her a study by one of her professors at harvard that said about 22% of all ADEM people will have a MRI that shows similar to MS and not like the ADEM "white out".

She still said whatever your issue is, she thinks my system got screwed up with the corticosteroids. I did not have corticosteroids when I had my first relapse or the ADEM whichever. I had corticosteroids 6 months later as a precaution. I had aleady returned to work and shortly after the steroids is when the odd stuff started. When my heart rate goes up it goes up for a full day of 130 or more. I thought it was topping out at 150, but apparently my monitor tops out at 150. I got a new one and have 175 with it. I take heart medication now and it stays down around 80. I've had echocardigrams, halter monitors, all kinds of stuff. I have a below average cholesterol, a below average amount of stuff in the arteries in my neck etc...

At one time I was leaning toward a leukemia type deal. Collapse of the immune system which may have lead to the shingles etc.. which triggered the ADEM. I dunno. High white blood cell count one test, and off the scale low the next. The red blood cell and hemoglobin is either low or too low to register every time. B12 is off the chart too high to get a number. I'm going to have my iron checked this week myself just for shits and giggles.

I don't know if it's normal but the 5 days I got corticosteroids I literally pissed every 30 minutes, all day and all night. I lost 35 pounds pissing that week. Been dehydrated ever since, dry skin, dry ears, my eyes are dry and I have to clean my glasses on the inside twice a day due to water pouring out of my eyes. I've drank more water in the last 2 years than I have in the last 5 years.

Two doctors thought my abdominal pain was related to a MS type deal. Well MS hug doesn't typically last 24 months.

Also I bleed like crazy. I have purple spots all over my chest/belly and pretty large bruise type deals on my forearms and I haven't hit anything cause I don't do anything.

All that is suggestive of leukemia, who knows. Sittin here I do ok. Yesterday I got out and shot my bow. I pulled back twice (with a much reduced weight) and I had to lay down. I laid down in the entry and slept for 3 hours and couldn't move. Wonderful.

They always ask about fatigue. Maybe I'm not thinking right, but I really don't feel fatigued. I'll get up and do whatever I want to do, pick up stuff in the yard (big yard), mow or whatever and it will go along great, and then one day it will be going along and I will start yawning, the type of yawning you physically can't stop and will lay down in the yard if I have to and pass out.

I haven't driven in over a year because of that. I will be going along and start yawning and lay down 2 hours after I got up and sleep for 2 days straight. I sleep with a baby monitor in my room. Fun.

The good news is the state of LA just enacted medical marijuana. The bad news, I would have to change careers to use it lol.

my leg hurts from playing too much pokemon go for over a week now and it's just not going away. FML.

LOL, slacker.

Feel like I'm writing a novel here but my Dr. asked if I had been under stress lately. I thought for a sec and said the only way I could be under more stress is if someone was shooting at me. Then I thought some more and said, nope I know how to deal with that, shoot back. She was of the opinion that I've had MS for years and years and my doctors thought it was some other ailment. I haven't been to the doctor in 20 years. She was shocked. Nope I pay to have my A1C checked and it came back this time almost low enough to count as pre-diabetic. The only other issue I have had in the last 20 years is burcitis of the shoulder. I know that's what it was, because I got down on the floor and broke my shoulder back till it popped and I passed out. Woke up and it was fine. She said you should have developed more lesions while under stress and such. Nope, in fact some of mine resolved (went away) since 2-1/2 years ago. Another odditiy.

Picasso3 said:

I think i'm going to find a PCP and ask if i can try out some adderall and xanex. I have about 80% of the ADD symptoms and sometimes get social anxiety. Anyone see any problems with this plan? I've never been on medication or really had a doctor.

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Honestly? They'll probably hand you xanex out of their pocket. Adderall is a little different and a gp would probably want to refer you.

Borzak having too pee every 30mins is a side effect of the corticosteroids they threat MS with. Dose might need to be adjusted, ask the doc.

Well that was 2+ years ago. I had 1000mg a day for 5 days. The normal dose is 3 days at 1000mg, but if they "think" it's ADEM they really go all out since it can cause swelling of the brain and such.

According to my doc and several others no symptoms I have had since then are MS related, no new lesions etc...but a crap load of everything else. At first I thought I might have a bad fungal infection since according the CDC I'm the poster kid for it. I get all the check marks except for age. Diabetic, supressed immune system or taking corticosteroids, exposure to dirt etc..While I was "high" on steroids and had a ton of energy I dug down in the dirt with it less than a foot from my face for a month putting an antenna radial field down. By the time I had the steroids it was 6 months later and I had gotten over either the ADEM or the relapse of MS.

Nevermind I'm just blowing off steam. Sorry.

Has no idea adderall was a big deal. I guess it would be interesting to find out if I actually have it.

Xanax and Adderall do opposite things in the same part of your brain. If attention and focus is a problem, Xanax will likely make it worse. Problems with attention and focus is common with generalized anxiety disorder. Typically, you treat GAD or panic disorder with an SSRI like Prozac or Zoloft. CBT has also shown to be very helpful.

Adderall is awesome, I wish I could get my hands on some.. My crazy ex-stepfather takes them so when I was up in NY visiting a thieved a few while I was using the washroom. I've never felt so simultaneously chill yet mentally sharp in my life. Good stuff and I totally understand why college kids take them.

Why don't you get some?

I had some severe anxiety problems back like 15 years ago and was prescribed Adderall like it was no big deal. Did nothing for the anxiety but made me tired as fuck. I had to stop taking it because I kept falling asleep all the time.