major exacerbation
 

welp, thanks to budget cuts in arizona, i lost my insurance for all of 2012 so i had no medication to combat ms and still dont. i will start on avonex very soon, as my medicare coverage started in february. what kicvked off this relapse was quitti8ng oxy's which i was taking for over 2 years. i did it on my own, and the few days i was in bad shape were enough to start the ms snowball. i had just moved to michigan form arizona, and moved into a new apartment in december. an apartment with steps to get in and out. toward the end of december when i ran out of oxys and went cold turkey i started to have weakness in my right leg as happened in my first attack back in 2010. over the next month i got worse until i was forced to use an old walker that barely did the job.
once i got insurance in feb i was able to get a proper 4 wheeled walker. i have fallen multiple times while trying to naviagate the stairs here, and am at the worst health of my life. i have had foot drop in both legs, comes and goes, and now my right arm and hand is stiff and weak, and very hard to do anything with, and last week my left arm started to feel the same way. that is scary because i dont wanna become a quadriplegic but i am close to being one.

i have requested steriods but my neuro was hesitant to do so since i am diabetic- he said id have to be hospitalized. at this point (and before too) i want to do the steroids no matter what to see if i can recover. it is incredibly painful to do any sort of walking or moving much, and my feet and legs feel as if they are freezing constantly from the neuropathy.
i have lost control of my bladder and bowels repeatedly, luckily at home or on the way home. i just started on vesicare for the bladder incontinence, and my podiatrist upped my gabapentin to 900mg 3x day form 600mg 3x/day. i had asked about getting on lyrica but he said i could not take it with gabapentin- is this true?

my attack in 2010 was restricted to my right side from the chest down. the last 2 weeks my forehead/scalp on my right side is numb, and i am having double vision cause my eyes aren't aligning right or something. also i have a spot on my neck that is itching and tingling constantly and one on the back of my head that's always itching now- i'm sure from the nerve issues.

yeah so today a social worker from medicare is coming to visit, am going to try to havbe her help try to get me moved to a place without stairs, and help adjust my medicaid which is in spenddown now and useless to me. im getting about 1500/ monht in disabilty but my bills are over 1500 'month, when i started medicaid here i had not had the aprtment yet so no real bills to deduct but now its killing me, especially since i can t go shopping or anything. i have a nurse visiting but she doesnt do anything but chc my bp, and pt 2x/week at hiome, very light at this time since i can barely do anything.

my family is still unaware of my struggles for the most part. i mean, they do help, but my sister does not understand that i cannot visit every day, although i do try every couple days, as i have an open invitation for dinner, which is nice. my other sister from arizona just was out here. before she left i was telling her about what was going on and she said, "you seem like youre fine to me". i didnt get mad as i think/ know shes just clueless, but i told her that i wasnt gonna sit around whining and moaning, and especially in front of my aged parents, who are being cared for by the sister who makes me dinner all the time - i try to stay positive and smiling so as not to burden them with my issues...my dad is terminal with aortic anuerysm and also has alzheimers, and my mother has trouble walking like i do, along with dementia, since a stroke when she was hospitalized, in 2005, i think.

anyway, just felt like sharing in a place where i know many if not all of you share the same troubles. ill let u now how the steroids, and avonex work out...

p.s. im glad im off the oxy, as my dependency on the painkiller was worse then the pain, although the last couple months the pain levels are worse then ever... :o

wow thats a long post lol

Hi Clark

I am so sorry that you are facing such terrible symptoms at the moment. It makes me realise just how fortunate I have been, over so many years. I hope that you have someone that you can share this load with - too hard to go it all alone.

Yeah, this is a great place to share - hope you get lots of support and that your pain levels are manageable at the moment.

Lyn

xx

I'm really sorry you're going through so much - and basically alone. I hope the social worker can advise you as to what assistance is out there that you can take advantage of.

I can relate to your feelings about your family. My sister was just here visiting and I still don't think she "gets it". Like you, I try to put on a brave face just because I don't want to burden others with my struggles. Plus, there really isn't much they could do anyway. But it would be nice just to have someone acknowledge that I'm not always "OK".

I tried to explain to them that much of the time I can feel my disability more than they can see it. Not sure if she understood that. She tries but unless they can experience a day in our shoes they'll never fully understand what it's like.

It worries me that you're having to go up and down stairs just to get to your apartment. Stairs are not something I can navigate anymore. I hope you can manage to find a place that's handicap accessible. Let us know how the meeting with the social worker goes. :hug:

Yes, it's true.

Lyrica is a newer version of Neurontin (Gabapentin). For that reason you cannot take both.

So sorry for you exacerbation.:( I am glad that you are covered
by Medicare now and can receive the Care and meds you need.

I wish you good luck with Avonex. It has been very helpful to
some. I'm so glad that you have your Sister's love if not her
understanding of your disease.

Hope that your flare and pain lessen soon. Hang in there, we
do understand.:hug:

I'm so sorry you are having a tough time. I hope the social worker and nurse are able to help you in getting your needs met such as an apartment that doesn't require steps to get in and out of it. Additionally, does Michigan have some sort of Section 8 housing that you can get?

Check with your dr. about acthar gel. It may be an option for you. I'm not sure if it can be used with diabetics but it may be a better option that IVSM.

I hope you start feeling better soon.:hug::grouphug:

In the hospital for a few days getting steroids

Good luck with your IVSM and your hospital stay. I hope they can keep your blood sugar under control. Hang in there Clark! Please check in when you can and let us know how you are doing. Saying some prayers for you.:hug::hug:

Well I have had 5 bags ivsm my blood sugar skyrocketed to 365 this evening and for some reason my pupils are very dilated . Some strength may be returning , but not much aNd not for long. Neuro doc said I'd prolly behere for 4 days and probably go to rehab center

try to keep your sodium intake to under 2500 mg while on IVSM...once you are back on your feet, you might consider medical cannabis for some of your sxs.

Thanks. Yeah I have been trying to save money to get mmj card in mi

I'm glad you were in the hospital for your IVSM so they can keep an eye on your blood sugar. I hope that you start seeing some improvements soon.:hug::hug:

Just reading that made me feel pain.

You were DXed only three years ago and you have gone downhill this much? MS is friggin stupid.

It's been about a year and a half for me, but I feel fine as of now. My biggest fear right now is the possibility MS will just go all to hell in me and next year possibly....I would become very disabled from it.

I hate the unpredictibility

Hang in there, bro...

You make me love my family all the more. Thank you. I wish you luck. Is there a local MS society that can hook you up with any resources.

update:
i have been in rehab center for the last 9 days, and i am a little stronger.
currently done with the steroids, i had some oral steroids in the last week but no more currently scheduled

was hoping to get released soon but they are keeping me as long as they can, scheduled for a june 12 release. i will be going to my sisters home while we try to get a room in low income disabled housing, and will be taking my nephews room, so i am ok with spending the extra time in rehab. i guess...

still trying to get my avonex script started, some communication issues with my neuro doc and msactive source

thx for the advice and well wishes it really helps to communicate with people who know what its like :grouphug:

Clark, that's a long time in rehab, but if you're ok with it, it's all
good. It looks like they want to keep you until your insurance
runs out.:rolleyes: Some insurance only allows so many rehab days
per year, so be careful, as you may need it again before the
year is out.

So glad your Sis is there for you. Let us know how it goes
for you.:hug:

The latest Is I am not really recovering from my phys therapy and my neuro ordered me back to hospital for more Iv steroids. I am In a quandary though; if I leave the nursing home/ rehab center I may not be able to come back. I only got in because my neice works there. Also I'm not convinced the steroids really helped me at all. I could use some advice/ guidance please

Why can't you get the IVSM in the nursing home/rehab center? People get them at home all the time.

I Guess because I have diabetes. Anyhow I'm iin the er now
Waiting on steroids I guess

Good luck Clark. hope it works this time.:hug:

i have been transferred to henry ford hospital in detroit for eval of possible cervical myelopathy by a neurosurgeon. and a more thorough investigation of my ms. my neuro here in michigan has not been able to get my az records from st Josephs, not sure why but i plan to call them today. the steroids have helped, but i have not continued them so far at the new hospital...

Thank you Clark.

Regarding IVSM, I find that they help me while I am getting them. In fact, I am Wonder Woman while I am on them. Then I crash and have every symptom I started with after they stop.

Gradually then, things get better over weeks- like 6 weeks.

I am unclear whether you are on Medicare or Medicaid or if you are dual.

I hope you get better housing (if you have any option- ask for air-conditioning).

Sorry I was so late to your thread. Be well.
ANN

Good Lord Clark...prayers and hugs as you travel this challenging road...know that we're pulling for you.
Don't forget to use all available resources at the hospital, especially patient advocate. You need to keep on top of how many days you're allowed in hospital, etc., and also to keep you up to date on all that's going on.:grouphug::grouphug:

well it has been an up and down battle. i was released from henry ford hospital around june 4th back to the nursing home/rehab center. i had been referred there after my mri of my neck showed possible disc slippage pressing on my spinal cord and my neuro wanted me evaluated for surgery. new mri's showed the discs were not impinging on the spinal cord, the ms had caused lesion there, as i suspected. i got 4 days or so of ivsm followed by oral steroids. i was able to make arrangements to move out of my apt thanks to my sister and her husband, who cleared it out for me.
my niece told me my dad had had an "incident" when he realized my car was at my sisters. he had known i was in the rehab center, had even visited me once or twice with my sister, who was caring for him- but he had Alzheimers so sometimes he would get overly upset and obsessed about certain subjects- i had not called him while i was in the hospital so as not to worry him, but i called him june 6th after my niece told me- it was the last time i talked to him- he died the morning of june 8th in his sleep. it had been expected since last october, but unexpected at the same time since he didnt seem overly ill- he had aortic arch aneurysm which apparently started leaking a couple days earlier. i thank god he didnt suffer, as we had been prepared for the worst- a bloody, painful experience. my sister said when she found him, his arms were folded behind his head and his feet were crossed, after seeing him sleeping on his side an hour earlier, i left the nursing home and sat with him awhile, and proceeded to spend the next 6 days out for large portions of each day and was doing well amidst my grief. i was leaving for his internment and pt said i must come back afterwards or medicare would kick me out.
i came back after pushing my walker thru thick grass and uneven terrain and had some brutal therapy that really wiped me out. the next day my legs were were worse, and so on, another relapse had started. i fell using the bathroom that sunday evening- nothing broken but some nasty bruising and a wrenched back- and by tuesday i could barely stand even with my walker.

i'll continue this later...

I am so very sorry to hear about your Dad, Clarkstar. Even when it's expected it's still a shock. I'm glad to hear that you and he had contact before he left.

I hope your condition improves. I'm surprised they wanted you to continue with the PT after coming back from your Dad's services. Seems like they could have given you at least one night to get some rest after all that overexertion. Mental stress can be just as debilitating as physical stress. I really hope you get a break and feel better.

Wish there was something I could do instead of just say "hope you feel better" but please just know that you're in my thoughts and prayers and I really do hope things start to improve for you.

:hug:

Bless you Clark. I'm so sorry for your loss. :hug::hug:. Love and
prayers for you.

Because I have MS and the fatigue factor, the PTers let me
rest between exercises and to have some meals in bed, so
that I could rest between sessions. That did help a lot.

See if you can explain your fatigue factor and cut you a
little slack.

i was just getting started on these pt people. the week since my dads burial i had gotten worse every day, no matter what i did. i had a "care conference" on the following friday which was laughable, they were saying i was doing much better and would be going home on the 25th.my neuro was on vacation but his office said to go the er for ivsm on the 24th once i got there, it took several hours to get the ivsm, then my neuro's partner said to send me back to the nursing home and i could continue on oral steroids, which was contrary to what my neuro had wanted to do the 2 previous times. but whatever, so when i got back to the nursing home i could barely move my legs at all, i needed an aide to lift my legs into bed :( i was supposed to go home on tuesday, so i complained to the therapist that i was in no shape to go home at all. she said they would keep me another week. then here comes the phys therapy manager, who i had mentioned to the therapist that the care conference sounded like a bunch of bs to me. this lady proceeded to tell me that they werent going to "fix" me and i would be in a wheelchair soon no matter what. she also said i should see a psychiatrist or psychologist, cant remember which. she seemed a little perturbed that i did not agree that i was ready to go home.

i did walking therapy all week, just short walks which i could go about 20 feet before having to sit and rest. on friday i had the slave driver pt lady again. she acted liek i hadnt done anything all week and that why i was so much worse than the previous week. she said she'd had many patients with ms before and they all responded well- disregarding that i had done everything asked of me with a smile and been working my butt off to try to get better, only to keep backsliding. i didnt even bother trying to argue with these numbskulls. now i am due to get out in 3 days, to go to my sisters house, where the plan was for me to stay while waiting to get disabled access apartment, not have her be my damn nurse. i am at a loss what to do here, i am not ready to go home, i cannot care for myself, and the therapy mgr kept saying i didnt need 100 oercent care. i guarantee i cannot get into my sisters home unless i am in a wheelchair with a couple strong guys pushing it. i cannot walk her ramp with my walker as its pretty steep and i could not stop to rest on it.

well anyway rant over. this sucks~!

i really miss my dad too, he was a great guy :(

Was anyone there with you during this conference? Is there anyone who could be your advocate besides yourself?

It sounds like this nursing facility is probably coming up on the maximum number of days they can keep you in their care and wants your records to show that you're ready to be released when, in fact, you aren't. I might be wrong but that's just what it sounds like. It sounds very frustrating and I hope things can be worked out for your benefit.

no and once i started saying that everything they were saying would have been true a week earlier but was not the dang social worker slipped right out of the room:mad:

How are things going today, Clark? I wish there was someone who could be a watchdog and a voice for you. Don't get me wrong.....I know you're speaking up when you can. I know it's hard to question things after the fact. I just hate it when someone else acts like they know what's best for you while you're trying to tell them that YOU know what works and what doesn't work for you.

True and it's good for the rehab hosp to know that a fam.
member is interested in your rehab and your well being.:rolleyes:

Clark-

First I am sorry that you lost your dad. It is good that you spoke w him.

I am so sorry for the way you are being treated. Is there an Ombudsman for the disabled or for nursing home patients or, depending on your age, the elderly in Ohio? In fact if you can find any of these, call them. They can lead you to the person that may be able to help you.

Best to you,
ANN

This is fm Disability Rights Ohio. It isn't exactly what you need but it says that if you don't know if they can help or not to "call us anyway" and they will see if they can find who can help you.


Need Our Help?

"If you think that your legal rights have been violated because of a disability, Disability Rights Ohio may be able to help. If you think you have been abused or neglected, discriminated against, denied services or been unable to access public facilities, you should contact our Intake Department. If you are not sure whether we can help, contact us anyway. If we can't help, we'll try to connect you with someone who can. Disability Rights Ohio does not charge its clients for services.

Disability Rights Ohio Intake Department

If a person with a disability needs help from Disability Rights Ohio, the person with the disability, or the parents of a child with a disability, can contact Disability Rights Ohio. Other people can submit a request for help on behalf of a person with a disability. For those requests, Disability Rights Ohio will contact the person with a disability for direction. Read more about eligibility for Disability Rights Ohio services."

Intake hours are weekdays (except holidays) from 9 a.m. to 4 p.m.

Voice: 614-466-7264 or 1-800-282-9181 (toll-free in Ohio only)

I hope this helps.
ANN

update
 

well i was discharged on july 2. i went straight to my neuro for follow up. he said my ms seemed to be "progressive" at this point and wanted me to go to henry ford hospital's ms clinic and start back on tysabri. he said he had a patient progressing like me and he sent her to henry ford and did not hear from her again, he seemed to think that was good lol. he also showed me the mri image that sent me there in the first place where it was clear the disc was into the spinal cord, so i'm confused about that part... anyway i did not want to go into the hospital immediately so his office got me an appt on the 16th- he had suggested i go there to the er...

well when i got to my sisters house they were not ready for me, didnt even have a bed in my bedroom. i had to sleep on the couch. that night i got stuck on the toilet, peed myself trying to get to the toilet in the middle of the night- same thing happened the next night too. just too far to walk when walking so slow...

im settled in pretty nice now, and ordered a strap to help lift my legs into bed, dont need it too often now, which is nice.

i have 2 home health care companies fighting over me lol and ill be trying to get help to get a scooter to get around. i was at my pcp last tuesday for one week follow up and he asked if i wanted to go on suboxone, i misunderstood and thought he thought i was having withdrawals but i want to try it now, as i have fairly bad pain in my legs and feet.

i had a potty chair put in my room so no more accidents, and am avoiding overeating because i hate the cleanup etc of that thing. also keeping my blood sugar in line. i am getting stronger, not every day, but every couple days, as long as i dont overdo the pt. after mondays pt i was beat the rest of the day and tuesday was rough too from that. on wednesday i explained to the pt guy that we have to go lighter as the pt girl from the home advised me. she said it took her some time to realize it but i had to be really careful to not overdo it and cause a setback...also im hoping to get 3 days of pt instead of the 2 days/week theyt scheduled me for.

overall im feeling better and hope to be walking a bit more soon, quality fishing weather is slipping away ;)

So glad to hear that you are home and getting settled. Any
improvements are always a good thing, no matter how small.:)

Keep up the good work and feeling better.:hug:

I'm glad you're home now, Clark. I hope things go smoothly for you and you get the help you need and deserve without too much hoopla.

Anything that makes your life easier is a good thing so don't be hesitant to ask for things that will help you. The bedside potty chair is a Godsend at 2 AM when you know there's no chance of making it to the bathroom. I'm glad you're speaking up about the PT, too. If it's too much or too grueling then it's not going to help.....and only you know what works best for you.

I really hope you get some good fishing in soon! :)