testing so expensive

[Jena]

good morning

so I'm realizing how incredibly expensive all this testing, medication etc. for the ms is going to be.

I called the mri place that is doing "free" mri's on sunday's yesterday only to find that there is a waiting list and all you do is leave your name and number on a voicemail prompt message.

I called my neuro's office and asked them what the price was for their mri's in their facility. oh boy that was an interesting number, and they require half down.

So, i'm patiently waiting for the free place to call back, i'm hoping it'll be soon. Meanwhile i'm downloading forms and trying again for the insurance we weren't able to get last time. Im going to need it.

I did schedule some type of visual ep test it's called to record the level of damage in my brain. Ill have to sit and watch some tv with checkerboard pics etc.

I have to say being in the "maybe it's ms" mode to yes it is ms. A little creepy im finding it with all this talk of damage to my brain. I do want the mri now, even though i'm totally afraid of the tunnel. I want to see what's going on in there, how much damage has been done.

Each day my memory worsens i'm trying to remain calm and smile thru it, not be anxious at all. I"ve been pretty good at handling it, yet i'll admit it's unnerving.

Just figured i'd share. Anyone who has any info on stuff, free junk etc. please by all means share away. I have to go into older post with diagnosis i think there was some useful medication stuff there.

I just want the medications, yet he won't start them until he sees the level of damage. I appreciate him being so careful, yet as the legs spasm at night, each day i forget more, a bunch of other fun symptoms are occuring............ im like umm medications please.

 

[ML]

I hope you get some good response to this; you must be so scared.

 

[Jena]

ml thanks. no im not petrified, yet i'm def. concerned. just at a point where i'd like the mri done, medications talked about and administered ........ been long time and coming. i read script for mri's yesterday it's funny to the place and it hit me as i saw what it read lol. he's also checking for brain tumors because my dad died from one. yay.... lol NOT

i have a neighbor across the road from me. she's 50ish, has ms. odd right? we have lived here in this house for a year. she did not take the medications she did herbal remedies.. oh boy she is in a wheelchair and just last week lost use of her arms.

i sit and watch each day since we have lived here her husband bust his butt, her be locked indoors she's terribly depressed. i've wanted so many times to make her lunch, go by offer some comfort. yet she is very embarrassed of her situation. so it's stopped me. point is i want the medications due to watching that!!!!

 

[Hound dog]

Jena

You might want to try for medicaid, you, yourself. With the new diagnosis you might qualify.......doesn't hurt to call and ask.

 

[Jena]

did am already on it. lisa let me tell you i'm one extremely defiant tough person..... yet since the neuro guy hit my nerves with that tool he used i've been flaring so badly.

the only thing that slightly relieves my legs is getting pressure off of them. i was tearing up this morning at the feeling of it. i'm limping thru the house like an old lady. the muscles are so tight and burning and so uncomfortable. my next testing is next friday.

i think i'm calling him today just to ask, he said i could call with questions yet don't want to drive him batty for some medications to help this till we start the medication protocol. i was giong to do my drive by at herbal place yet i dont' want to mess around wtih anymore herbal remedies.

the thing we fill out is for the health insurance from the state, if we dont' qualify for that than we do the medicaid run. maybe even a benzo to loosen up the muscles so i can function highly today would be nice.

 

[susiestar]

I am so so sorry that you are having this cost worry on top of the health and difficult child and other worries. I know exactly how frustrated you are with the wait for treatment, been there done that myself. I also know how hard it is to have your memory just quit working - been a problem from my fibro for a long time now.

The others are right about applying for medicaid to the state. That state paperwork should be the stuff for medicaid as well as the state. Here the state kids ins is called Soonercare and when I filled out the paperwork I was shocked to find that both husband and I were also covered. It was NOT expected, but was a wonderful surprise as even with the federal COBRA subsidy we just couldn't keep up with it. Heck, while we were on COBRA we couldn't afford to see the doctor because the copay just were not possible after we paid the many hundreds of dollars for the ins. SO it is def worth applying.

Don't just send in paperwork. Get on the phone and see how to get qualified.

Also go online and find out if there are free clinics. Do NOT be shy about going. Given that your husband is self employed and the business is having problems, your income may actually qualify esp if you count all the stepkids.

As for medications, www.pparx.org is your new best friend. It is the Partnership for Prescription Assistance and has links to ALL the drug company free/reduced price medication programs. Any medications the doctor is thinking about you should check to see if there are programs for on this site. You also need to get a copy of the list of medications covered by Walmart under their $4 per month plan. It is perfectly fine to ask a doctor to think about rxing medications on that list first rather than the newer more expensive medications. What you need may or may not be on that list, but make sure the doctor knows cost is a big factor. The doctor will have to help with the forms for the assistance programs but most docs have no problem with that.

You also need to start the paperwork for disability for yourself. This is through the Social Security Administration. It can be done mostly over the phone and mail or you can make an appointment and go in and they will help. here they are awesomely helpful. When you apply it will automatically be for both disability which you must have X number of credits in the past Y years to get AND it will be for SSI. SSI is supplemental security insurance and it is for those who do not have enough quarters of work that earned X amt of dollars per year. The max amt of income you can have to get this is very low but the paperwork is done automatically when you do the disability paperwork. So be sure that you don't think that if you get denied SSI that you are also denied for disability. They are 2 different balls of wax from one application process.

You MUST set some things into motion to get this stuff organized. A 3 ring binder with folders and sheet protectors inside it will be your best friend. Put things with directions in the sheet protectors and keep copies of everything in the folders or punch holes in them and put them in the rings. Take detailed notes including (esp) the name of who you speak to and the date and what each of you said. If you only get a first name ask for an employee number so that you can say that you talked to Jenny on the 10th and not Jenny Smith but Jenny 2468.

I strongly suggest getting a carbonless order pad from staples. One with THREE copies. then if you tell a kid to do something, write it down. One copy to them, one posted somewhere that you can see easily (bathroom mirror is a good place) and one iether left on hte pad or put into a binder or folder. That way you don't get the "You never told me". Get them to initial it. My mom did this when the lupus and other problems and medications fried her memory. It was truly awful for years. She did this with students, coworkers, even dad and I and gfgbro. It took a LOT of conflict out because she could then see hwat she said, that we agreed to it or at least knew about it, and generally made life a TON easier. Takes some getting used to, but is very helpful.

You should also go to the county health dept. They should have some programs to help both you and difficult child. Will be LONG lines, lots of waiting, but may be very helpful. Don't call because you generally will not get the same answer from any 2 different people over the phone.

Keep some type of puzzles around. Sudoku, crossword, word search, brain games, various nintendo ds games for keeping the brain active. The more of that th\ype of thing that you do the better off you will be. Memory and the brain are muscles as well as anything else. the more you use them the better they will work. You can do online jigsaw puzzles for free at www.jigidi.com and www.jigzone .com. I prefer jigidi because people upload new puzzles all day every day and jigzone does not. You can also find some cool logic puzzles from Everett Kaiser Software. We have all been hooked on Kaiser's Sherlock for many years and they are only about $10 or $15 to buy. free trials give you five or ten puzzles at each level. If you like crosswords or sudoku or logic puzzles, the kinds in the magazine section of the store, be sure to check out Penny Press's website. They publish many of the puzzle magaziens and you can buy old issues dirt cheap. Years ago I bought about 20 of each of sudoku and logic puzzles. We still enjoy them and they have been much looked forward to Xmas gifts for my family and extended family. I can get thank you to give me about 3 hrs of work for ONE sudoku magazine!!

This is a LOT of info. You may want to print it if you want to work through all the things. One AWESOME memory aid is kind of strange. If you absolutely cannot forget something, and/or are having at tough time learning/remembering it, put notes up by the toilet that you use most often. My mom did this when she went back to college and had to learn different math problems. We only had one bath and I learned with her even though I was in elem school. Having it there means you will read it over and over and it is a big help in remembvering. Studies have shown that ads placed on the walls of restroom stalls yield more resutls than ads placed in many other places. People still think it is strange so many companies won't do it, but it is effective. Also keep postits and a pen or pencil in the bathroom - you will think of things as you wash hands, do makeup, etc.... and being able to write them down will help you remember. My parents do that with messages to each toher that they want to be remembered. It really cut down on the "you never told me" arguments.

Many big hugs. I know this is a LOT piled on top of the difficult child junk. I am glad the doctor is also checking for a tumor. Any scan should check for that while they are there.

 

[Jena]

susie wow!! lol your better than the 3 books i took out of the library. thanks for the link also. we already filled out the insurance do'cs for the state. the snag we ran into last time was the rest. and also easy child. long story..... it's hard with the store he makes too little for us to afford private and too much for state stuff. yet we just got a copy of new taxes from accountant and that should help. we didnt' pull alot out of store this year and we claimed all the kids.

so onward and upward. i also found some relieving exercises for the leg thing too. i have to wait now though until the free mri calls me back, i'm hoping off of next weeks test we can than schedule the lets talk medications appointment. i bet you have never seen me so eager to be poppin some medications?? LOL

thanks again awesome stuff got the pm too! your great

 

[GoingNorth]

The gold standard drug for MS spasticity is a medication called Baclofen. It's been around forever and is very inexpensive. Ask your doctor for an RX for that.

 

[Mattsmom277]

Jena, in my PM, I forgot to mention footwear. You mentioned it is hard to stay on your feet etc. For me, when my legs are really spastic and tight, I have learned to ALWAYS wear my shoes. I wear ONLY good quality, well made, super light weight and supportive trainers. (My current pair are New Balance). I have a pair for just the in the house because when my legs feel that way, the support on my feet arches and the posture it creates or something somehow really does provide major relief from leg issues and helps it not spiral out of control. So even indoors I wear the shoes. Nothing but my trainers touch my feet except when needed absolutely for dress purposes. Even then, anything tight, or with a heel is not my friend. I did wear high heel black boots with my dress pants to a meeting last week, I always feel confident when I'm dressed up. But I stayed off my feet as much as possible. Put boots on only when ready to leave, walked as little as possible in them, took them off the instant I was home and put my trainers on.

I have never heard so many gasps of joy like from others with MS when they get on board the "shoe train". Women and shoes, right? It's a tough pill to swallow. But boy our bodies thank us. for me I'd rather feel good and capable of movement without pain than be the hieght of fashion lol.

 

[cubsgirl]

GN is absolutely right about Baclofen. I love that medication.

And Mattsmom - thanks for the heads-up about shoes. I've been walking in cheaper tennis shoes and noticed a) I wear them out in certain spots quicker and b) my feet are killing me......I'm going to try out better made ones.

I'm so not the epitome of fashion

 

[Jena]

north yes thank you i researched it today. luckily he has scheduled me for two more tests besides waiting on the mri. we have one next friday and than another first week in june. than a phone conference with him regarding results, than a follow up face to face mid june. so medications are going to have to wait. i have a creepy suspicion that he thinks i have a tumor. i called office today and the girl said he probably won't medicate because besides the ms he wants to check for a brain tumor, i was like you know what i'm good lol i'll just do my exercises i found on line and now the sneakers mattsmom was kind enough to tell me about!!

mattsmom i found some very simple exercises on line today because i was not so happy earlier. they were soo tight, hard to explain yet you know and the burning wow that was alot of fun. did the exercises still have it yet was able to function much better! so i made it thru my laundry, washing floors, tutors, walking dogs, taking difficult child for ices, petco with her, tutors, homework with her and even managed to make a new chore list and house rules for my little animals.

i'm done now though lol

 

[Steely]

Don't forget that link I sent you for pre-existing condition health ins. It is pretty reasonable. Also, safeway/Tom thumb/Fred meyers has this pharmacy card that you can get, that has reduced the cost of my medications by half, literally. It is amazing! Ask them for it, because most of the staff does not even know it exists.

I am pretty sure you don't have a brain tumor. My dad just died from one, and your symptoms don't sound like a typical one. What kind of tumor did your dad have? Mine had a multi forme glio blastoma. His first symptom was a seizure.

Many hugs.

 

[Jena]

i'm sure i dont' either..... i just laughed at how dramatic stuff can get. it's kinda like if it isnt' broken dont' fix it. often i find you go to doctors and they try to find more stuff lol.

i had no idea thats what he died of.my father's i dont' remember what kind. he had passed out from what i heard, dizziness and they took him to dr. etc. than mri and found it. he was dead 2 mos. later. wanna laugh no one even told me....... i learned of it becaues even though the past was absolutely insane as i shared in my other great thread NOT, he would call once a year on xmas eve and send girls and i money via western union. was his guilt money. he'd been slowly edging up to for years anti up and apologizing. last christmas no phone call i knew right away something was up.

i timed it on purpose and waited till after xmas and new years and than i went on the ssi index and sure enough there he was listed as dead. he had died prior to my birthday that year. so than we dug further and found his obits with my name listed as suriving daughter, can you imagine?? and my stepmother never called, aunts uncles i havent' spoken to in years no one called. so insane....

anyhow i have gait issues, dizziness on occassion, vision issues alot as of late, tight muscles, burning legs, a few other interesting issue i'd rather not post muscle weakness, dropped foot on occassion numb feet, cold feet, burning hot feet......... the list goes on and on

yea its' not ms with a side of brain tumor. it's just boring old ms. that i can live with. mattsmom told me my sneakers to get i found my stretching exercises on line i'm good to go till medication time