Just got back from seeing him a little while ago.
Like Sally said, "I want my Mommy....Waaaaaaaaaaa!!!"

Mulling a few things over, as I now have some decisions to make.
Will post on another thread a bit later.

With love, Erika

Erin, it is cruel that you have to go to downtown and walk to the building because of the change in your insurance.
I've found a weirdness in my car/home insurance. If you even report an accident, and do not collect because the damage is below your deductible, it goes as a black mark against your record, which is assessed when your review comes up, and could cause insurance cancellation. Never report an accident if it's minor enough so that your deductible will cover it. In my case, I drove my car (very slowly) into a garage door which was coming down intstead of going up. It turns out I don't need a new door, just a $100 brace on the lower door. (the repair guy was honest).
We must never assume insurance agencies are our friends. I thought they were "neutral". I have talked to the execs and they say they will "withdraw" the claim, but can I believe them?
Erin, maybe your new doctors will shed some additional light on your condition, which could be an unexpected bonus of having to change. I hope so!

That's a really good point Mariel,
A new doc might indeed end up being a positive, rather than a negative thing. i hope so too Erin.

With love, Erika

My dad was the one who reported the damage to my car. I didn't even know it had happened. I was home asleep. I woke up, and there were emails from my car insurance company emailing me about an accident that had been reported. I was like "what?".

My dad is paying the deductible for the damage he caused. It was totally his fault. He also feels bad because I haven't been able to drive the car and he went and damaged it. We get it back today in a couple of hours, and as soon as my eye doctor sends my physiatrist a letter about my eyes. I should be getting my hand controls and driving lessons in the hand controls soon. I'll be able to finally drive the thing. I. Can't. Wait.

Three cheers for Erin driving her car!

I don't have it yet.

Nervous about it.

I'm annoyed with all the health professionals right now. Losing all my doctors, and now the PT place is moving. They just told me today. At the end of the month. To a place six miles from my house. In an area that I really do not like to drive. It's on a highway. I hate driving on the highway. Like I have a phobia of it.

I give up. I haven't been able to keep up on the PT anyways. I'll be doing it steady for a couple of weeks, and then something happens, and I end up having a week or more between visits. I've been feeling myself going downhill during those times. So, screw it. I give up. I only get 45 PT appointments anyways with my crappy new insurance. Think I've used half. The world is trying to keep me from getting anything done for myself. I'll probably end up not getting hand controls in the car, since I have to get the ok from my eye doctor. I'm totally expecting something to happen to screw that up.

Erin :hug::hug:,

While sometimes it does seem like all we have in front of us are walls, focusing on them is not helpful. Nor is giving up, or blaming the world for our perception of those walls. Truth be told, the "world" has no fixed opinion on your personal life, or mine, or on anyone else's.

We must advocate for ourselves as much as possible and we must also be patient as our world unfolds before us. A little direction, even if it is to say to ourselves "I prefer that option over this other one", can help things to move along in the direction that we prefer, and that empowers us to move forward no matter the circumstance that we find our selves in.

While it is open for debate whether holding a particular focus influences outcomes, what we focus upon, appears to our consciousness more readily than what we do not.
For example, many people have found that when they are in a particular situation, that others who are in similar ones, seem to become more visible or more numerous in their world. Just ask anyone who has found out that they are pregnant...all of a sudden, there seems to be more pregnant women around them.
It seems to work the other way too. When we have a particular stress...like a smashed up vehicle, it seems that we see the other vehicles that have dents on them, or meet people who are dealing with insurance and car repair issues.

You might consider that there may actually be a synchronicity in the things that are taking place right now in your life that eventually can get you what you desire.
For instance, it might help if you inform your eye doctor that you will need to be able to drive your car to get to your PT clinic which is moving; and that you want him/her to facilitate the adaptation of it with hand controls.
Most people do want to help others, and will, if they know how they can specifically do that. We can certainly let them know. What have you got to loose in doing so?

I wish that you receive all that you desire, but also hope that you find an inner strength to focus on that, rather than on what may seem like obstacles to obtaining them.

With love, Erika

Nicely said Erika.

Sometimes I think that for some, there is something to be lost.
I held on to a mis-taken thought and self-sabotaged.
Luckily that is all behind me now!

If the loss is greater than the gain, there goes the incentive.

Thank you for your kind and wise words on this forum.

Officially ran out of a Amprya today, I've been taking the free trial for 2 months now. It has given me back so much and I feel it slowly leaking away.

I started over 3 weeks ago trying to turn this into a prescription. The 1st week I held back and let them do their thing. The 2nd week I started calling every other day. By week 3 I called every single day and pushed and facilitated all parties getting what they need including sending the signed med docs myself.

Finally got all the ducks in a row on Monday, time to send to the specialty pharmacy. I waited until today, pharmacy has no prescription. Set up an account with them and called Amprya to ask why?

Talked to the same gal who finally got everything together on Monday, she was baffled, no idea why my case manager hadn't sent everything to the pharmacy. So she did, put me on hold, made all the final calls and got everything faxed to the pharmacy marked urgent.

Now I am patiently waiting until after lunch to call the pharmacy back. Meanwhile, hour by hour I feel myself worsening and slowing down. I am so crushed right now that all my progress is being erased as I type this. The hope, the good piece to this is that I have confirmation that the drug is really working for me and doing what it's suppose to.

ker0pi,

Hope you can get your med soon. I've been on Ampyra for 7 months. I really could tell the difference at first. I still can now but back problems are causing walking to be worse. I can even tell if I'm late for my next dose. The leg spasms have almost disappeared and the heaviness isn't as heavy, if that makes sense.

That is my issue in a nutshell. I have a calf cramp that won't go away and my arms & legs are so heavy. The Amprya has been a miracle for me. The last 3 days I was able to walk around without my cane and I even made cookies with my son without having to take a break or sit on a stool. I was considering quitting work before I started the Amprya because I can't hold my wrists up when I'm typing without it.

Called 3 times now to check and still no prescription.

This morning has been so rough. I could not walk on the treadmill, I had to stop so I didn't fall on my face. Walking my son to class was near impossible and took me twice as long as it had been.

I can barely lift a coffee cup to my mouth again, it takes two hands not to shake. My hips are back to their constant pain and feeling like they are being squeezed in a vice, that had eased considerably with the Amprya.

It's really hard having your symptoms go away for so long you forget about them and when they come back you just want to lay on the floor pounding your fists, kicking and screaming like a child scream NO over and over again.

It's even harder knowing all I have to do is take a pill twice a day to make things better. I keep trying to focus on the fact that there are so many people for whom this drug does nothing and if I'm just patient I will receive relief again soon. But for many they do not have that.

Even if it takes until next week I will manage this. It is definitely helping me to know what my new base line is after my attack at Thanksgiving. I had started the Amprya before that attack had finished and did not know what further permanent damage it had done.

I've told myself to calm down...to not get mad, which I usually don't, but I'm fuming right now. I've been waiting for a week now to hear back from my doc, who was supposed to call my neuro regarding me getting the IVIG for this stupid Parvo infection that is wrecking my joints. I called on Tuesday and reminded his nurse, but still didn't hear back, so I just called again.

Apparently my doc isn't in today but yesterday he left a note for his nurse to set up a call between him and the neuro for tomorrow. He has basically sat on it for a week without doing diddly, while I've been sitting at home...I'd say tapping my fingers on the table, but that is an impossibility with the condition that they are in. It is hurting a lot to type this but, but, but...I just need to vent.

My parting comment to the nurse was that if my doc doesn't talk to the neuro tomorrow, or if in fact he doesn't intend to, to at least take the initiative and put in the order for the IVIG himself; or to prepare my records because I'll be getting another doc.
That got them moving (I over heard them talking while I was on the phone). Probably because I am also a medical practitioner in this town and there is the potential for negative publicity among fellow practitioners not shining a kind light in his direction.

Sheesh. Its times like this that I wonder why some docs are so casual about things with their patients; especially when they aren't that way with their own family members. I know that they aren't because when one of their own needs treatment at my office, they want them to get in ASAP...and even ask for our practitioners to stay late or to reschedule someone, so 'theirs' can get in.

How's that for a rant?
Passing on the cheese...I'm going for the real wine.

Sheesh..so much for professional courtesy. Hope you get the attention you deserve!

My husband is doctor and that was an extra nice thing at the time of my heart surgery. And the fact that a neighbor friend is a nurse on the cardiac floor!.

IVIG is often done with a home health care nurse, that is good so that you are not exposed to the yukkies at the hospital.

Best
Missj

Wow...I was really on a rant yesterday. Back to my usual self now, thank goodness. I dislike getting into "myself" like that.

I honestly don't believe that I deserve any more attention or consideration than anyone else...but it just seems like that base level of consideration is not universally applied at times.

Thanks for the listening ear :winky:.

With love, Erika

I feel like we are kindred spirits in that sentiment. I do not feel I am any more deserving than another but I do feel like there is a lack of basic consideration. If we as a species could simply apply that to everyone, even those we do not consider worthy of it, our planet/societies would be in a much better place.

Erika, considering the amount of pain and discomfort you've been dealing with, I would have thought your doc would have put a stat on the order...shame on him.

You had every right to be upset. I am non assertive until I let it boil to overflowing-then I call and rant. I should just call several times per day until they get so sick of hearing from me they do as I ask;)

That's why this thread is here, dear...hope the wine was helpful...

On the note of consideration/courtesy. My husband called me while I was on the phone with the specialty pharmacy, finally getting my prescription shipped to me. My co-worker, the one I can hear through my door with the radio going, puts my husband on hold after he told her he was trying to find my neurologist office.

My husband is dropping off a form for me and could not remember where the office was. My co-worker's husband goes to the same neurologist for MS. They are the only neurologist in our entire county. My husband could no longer hold, hung up and called back 10 mins later after driving around where he thought it was. He finally asked her to knock on my door and let me know that he needed to know where the neurologist's office was. So, she did and I had just ended my call with the pharmacy. When I was done telling him where it was located I asked her why she didn't tell him where the neurology office was located? She said I guess I just didn't think I should. What!?

:In-Lurve: (((((((Erika))))))) :In-Lurve:

:Heart: (((((((KerOpi))))))) :Heart:

More hugs, Erika.

KerOpi, Ampyra sounds like a real wonder drug. I will have to look it up to see what it is, as I never heard of it. It's cruel that you could not get through to those who should get it for you--and the same thing in Erika's case. Are doctors becoming more and more overworked because of cut backs? I do not know.
We have not had specific cutbacks here, that I know of, but my great pcp leaving town meant I had to go through three pcp's to find one which is both close enough to home and suitable to a person with my ailments. The first one I went to (in the same office as the old pcp who left) didn't want to deal with my rare diseases, wanted to depend entirely on hematologist in another town....that won't work in an emergency, must have a local doctor willing to be semi-educated on the rare diseases. So I did a lot of driving, crying,
and persisting. Still don't know if the new pcp will be good but he has enough sense to know he needs to "look into" things that are "different" in my case.

I've had to live like this, in respect to medical care, for many years, so the changes in "unavailability" are not as obvious to me, possibly? But we hear all the awful stories about how cut backs are affecting care. Now I am seeing up close with Erika's and KerOpi's problems. Both situations sound like they are just not bearable.

I don't understand what is going on.

I'm feeling weaker and weaker every day. Is this something that MS does? Does it do bad things like that, that quickly? Daily worsening?

I can barely walk at the moment. I'm freaking out. My dad told me to go ahead and go back to my doctor that's out-of-network. He'd pay for it. My dad and my aunt (the nurse practitioner) both thought that it would be better for me to go see someone that I actually know and have seen before, rather than trying to find a new doctor during a big flare like this. I can't see him till thursday tho. Hope I can make it that long.

I talked to my neuro the other day, and he'd told me to go see either my regular doctor, or try to find a new one. So, yeah, I'll go out of network just because I already know the guy. I think my neuro wants me to get checked out for anything else that I could have other than the MS.

noticed something tonight.

my legs are really swollen. I bet that's got a lot to do with why I'm feeling like crap. I put the EdemaWear on. My aunt used to work for the doctor that developed EdemaWear, and she was one of the people who helped keep track of the research for it when they were doing their studies. She keeps a stash of EdemaWear now. I need to see if she'll share some of her stash with me, mostly so I don't have to go to the pharmacy and pay $18 for a new pair.

Hope you feel better soon Erin.

I slept with my feet elevated last night. Felt a bit of a difference. I woke up two hours in, with my feet and hands both tingling. It was a good tingle, kind of like stuff waking up. Or at least it was giving me that impression. It just felt better than it did before.

Feet weren't as swollen when I woke up too. In the middle of the night tho, I turned on my side, and ended up with one leg not as elevated as the other, but the swelling in my feet and ankles was a lot better than it was when I went to bed. I also felt better around my waist and back. So, I do think I've got some edema going on. Gotta talk to my doctor about that on thursday.

oh, and I got a phone call today from my physiatrist. The one that is out of network for me now. They wanted to know if I wanted to try a trial of the electronic gizmo thingie that goes around the calf of my leg and would send electronic signals to the nerves in my foot to tell it to move. I'm a little worried about the cost of that, but this is just a trial to see if it would work. I told them yes. My dad said he'd pay for that visit too, because if the gizmo works, I can try to get it from whoever my new physiatrist would be. (the gizmo is the Bioness gizmo for drop foot...not sure of what model it is) At least I would know if it works or not. Hoping that it does. I'm really starting to hate the AFO.

So, maybe that's something good. Hopefully. Really hope that it works. I'll probably know by this time tomorrow if it'll work.

something good happened tonight.

My dad gave me one of his old Macbook Pro laptops. My computer desk looks like a mini Apple store at the moment. It's covered in Apple tech. (three computers, two ipads, an iphone, and a ipod)

My dad wasn't using the computer, and I haven't been feeling good lately and kind of needed a distraction. I have to figure out this computer, because it's been having some weird issues. My dad likes to change things and delete stuff he shouldn't. I get to keep the laptop.

My dad seems to like to keep me distracted or entertained when there's an MS thing going on. I did not think he was serious when he said I could have it. I thought he was kidding.

I'm giving away my two Windows laptops that I haven't used since I embraced Apple tech to a family member or two now. It's time for all the unused but still useful computers to get regifted to other relatives. Or I'll end up donating them somewhere.

omg

woke up to something like stomach flu.

cursing the name of whoever gave me this. Can't go to the appt for the electronic thing now.

I have some zofran. (anti barf medicine) My dad said I'd be ok taking it. hope he's right. hope this doesn't last long, I can't even play with the new computer.

going back to bed

edit

took some zofran, fell asleep for awhile. I woke up a few minutes ago, and feel much much better. I think the zofran finally kicked in. I'm just being really careful with doing anything like moving around. Still feel a little icky tho. Just not as strongly sick feeling and horrible as it was when I first woke up this morning.

I might not be going to the appointment with my regular doctor today. We're supposed to be having a blizzard today, and it's supposed to be thundersnowing and be several inches deep around the time that the appointment is.

I was able to reschedule the appointment for the bioness thingie (the electronic leg gizmo) It's now on wednesday. I could have done it tuesday, but that's my dad's birthday. Didn't want to be mean and make my dad drive me all over the city on his birthday.

and whatever was making me sick on wednesday morning to the point that I thought I'd gotten some sort of horrible virus. That went away sometime around mid afternoon. Which is making me wonder what it was, because I'm fine now. The only thing I can think of is that just before I started to feel sick, I was laying in bed, with my feet up on a wedge pillow. The doorbell rang, and I went to see who it was.

That's when I started feeling sick and dizzy. Wonder if I stood up too fast, or if something weird is going on with the feet swelling and it's messing with my blood pressure. I've had something similar happen several times now like that. If I get to the doctor today, I'm going to tell him what happened, and see what he thinks.

it took me all evening, but that laptop my dad gave me is all set up now. I figured out how to erase my dad's stuff from the computer and get it set up for me. I thought I'd need a recovery disk, but I called Apple, and a tech there told me to download Mavericks, the new OS for Mac, and once that was on the computer, I was able to use an online recovery file to reinstall the operating system. Totally thrilled with how easy it was once he told me to download Mavericks.

so the computer only distracted me for a day. I am actually using it right now, and I'll probably be playing with it and fine tuning stuff. I need to reorganize my computer desk now. It really does look like a display at the Apple Store with a the various bits of Apple tech on it.

promised my dad that I'd get rid of my two Windows computers now while there's still a chance that they might still be useful to someone. Wondering if my boyfriend needs a new/used computer.

well, I went.

I lost a few more pounds since I was there earlier this month. (I'm not trying to lose weight). My blood pressure was 130/90. When I was there the last time, it was 115/80 (or something like that). I talked to him for awhile. Told him what's been going on.

He took a bunch of blood. I don't remember everything that he's going to check for, but the things I remember him mentioning are CBC, thyroid and adrenal stuff, kidney and liver. He was going to see if I'm anemic or not, and he was also going to check my b12.

I asked him to check the b12, because several years ago I had it checked, and it was 345. Which they told me at the time was fine, but I've been reading that b12 that low wasn't all that great for people with MS. He thought it was a good idea to check b12. I'm pretty sure he knows more about MS than some other family doctors do. His dad has MS. So, when I tell him that I'm not feeling good, he listens and doesn't blame everything on the MS. (this is why I'm so angry that my insurance won't pay for me to see him anymore. He's the most understanding doctor that I have right now other than my neuro)

I know he wanted to see what was going on with my thyroid because I have had a few steroid things over the past year. Think I had some oral steroids about a year ago. A big Rx of it, but I also had two of the lower dose steroid packs in December for that problem with the frozen shoulder. The steroids were the only thing that stopped the pain in the shoulder. So they gave me those a couple of times. Then I had about 5 shots of cortisone in my shoulder in December and January. Three in one shoulder, two in another. That's a lot of steroid.

just hoping that whatever it is that's making me feel bad is something that's fixable. I'm just so tired right now, it's not even funny. I keep falling asleep trying to write this. I feel like I got no sleep last night. I am more than exhausted.

got a phone call this morning.

the blood tests were all normal.

I forgot to ask what the b12 was. I have to call them back in a few minutes.

I'm mad that you can't see this good doctor, too, Erin. Having ailments makes you a hostage to the medical system. It's a bummer. Praying for you. Glad you have some new Mac toys.

having new Mac toys helps a lot. Even if it's a hand-me-down, it's something to new to me, and fun to play with.

I've had the thing on battery power all day just to see how long the battery lasts. I'm avoiding putting anything onto it because I'm playing around to see what I can do with it. At least it's something to do.

I'm glad you have your new toys Erin. I can keep your mind occupied

I'm trying to clean my desk off so everything has a nice home. My desk is really crowded right now. It's really really messy in here. That's the problem with feeling sick all the time, you lose all the will to clean anything up.

Trying to clean, I guess that would count as exercise. I just have to sit down occasionally because standing is stressful right now.

I slept with my feet up on a pillow again last night. Felt so much better this morning. Starting to wonder if it's the swelling feet and legs that's making me feel sick. I guess there was nothing wrong with my kidneys or liver, since they said all the bloodwork was normal. Maybe that edema is what's causing the insomnia, and because it's uncomfortable, it makes it hard to walk.

Not sure if I mentioned it, but I bought one of these the other day http://www.qvc.com/Sit-N-Cycle-Low-R...ct.F11165.html

It almost looks like a cross between a barstool and an exercise bike. (I guess I could call it a stationary unicycle) My dad let me buy it. (hey, I did say that we're into gadgets here). It arrived today, so I just need to assemble it and try it out. Hopefully it's not a piece of junk. Kind of hoping it'll work and that I can use it to slowly and gently exercise.

Hope I don't end up crashing it into a wall if I get unbalanced on it. I have to make sure I have it next to something to hold onto. Going to put grab bars on the wall in my bedroom for exercising anyways. Really hope it works.

WOW, Erin , I looked at that and it does look easy to fall off of. Good luck

I'm going to make sure it's next to something solid, like my desk. I'm going to go buy a grab bar for my bedroom wall too. Been wanting one for awhile in there.

I'm doing other exercises too, trying to build up the upper body strength. I feel like I wasted all those physical therapy sessions. I don't think they focused on the right stuff. I didn't feel any improvement in the areas I wanted (legs, knees) It seemed like each session, they would tell me I was done earlier and earlier each time too. Like they were rushing me out of there. Not all that happy with how PT went this time around.

Hopefully I'll start to feel better soon.

My doctor just called me.

I'd had my blood checked last week. His nurse had called me friday and told me that all my results were normal.

Technically, that wasn't quite true.

I'd asked him to check my b12. I'd had it checked back in 2007 or 2008, and at the time then, it was 345. (normal, according to my doctor is between 246 and 911).

So, the doctor told me the results for the b12. He said it was 252!! OMG:eek:

NO WONDER I feel like crap!!

He wants me to get up into the 600 range. So, now I've got to take some supplements, and take them regularly. In six weeks, he wants to check my blood again and he hopes it'll be up in the 600 range. Otherwise he'll give me shots every month. I have to find some foods that are high in b12 now.

He did tell me not to go wild on the supplements, because you can get neurological weirdness from overdoing it on the b12 just like you can get neurological weirdness from being too low on the b12.

I have some b12 I got at Costco. Consumer Reports said it was one of the best b12 supplements on the market. (It's called Simply Right Wellness & Nutrition, sublingual b12 2500mcg Methylcobalamin...it's cherry flavored!)

I'm going to go take some b12 and hope we can hit the 600range sometime soon.

For sure a low B12 may be complicating your body's ability to get back on track. Hopefully the supplementation will help.

I've woken up with inflamed lymph nodes under the jaw and the joints are on fire. Not just the usual ones in the hands and wrists, but also lower limbs ones. The body is as stiff as an old boot from generalized spasticity as well. I took some Ibuprofen but it hasn't done a thing for the joint pain this time around, so must be an infection of some sort (on top of the Parvo), that has the immune system freaking out :(.

The only place that I think that I might have been exposed to something was at the dentist yesterday, when I was there having my teeth cleaned. I haven't really been around other people lately, but I think that having my mouth open for an hour at the dentist was likely an open invitation for whatever bug was floating around that place.

Going to the Doc on Thursday for a cardio work-up, so will have him check it then.

Passing the cheese....

With love, Erika

while I don't think that having low b12 means that I don't have MS (b12 deficiency is often misdiagnosed as MS), I'm looking at a list of symptoms for b12 deficiency, and one symptom really stands out.

Premature graying of hair.

I've been going gray since I was 17yrs old. For some reason, seeing that on a list of symptoms for b12 deficiency, it just really stands out for me. Tinnitus is another one that makes me go "hmmmm...." too. (had tinnitus for as long as I can remember).

I'm pretty sure I still have MS, I just also happen to be extremely low on the b12. I think the low b12 is why the stupid MS has been so freaking annoying lately. Maybe the MS will let up a little bit if I keep throwing some b12 and other assorted vitamins at it.