[clarkstar]

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...

[clarkstar]

wow thats a long post lol

[Lynn]

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

[Kitty]

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.

[Snoopy]

Originally Posted by clarkstar

i had asked about getting on lyrica but he said i could not take it with gabapentin- is this true?

Yes, it's true.

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

[SallyC]

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.

[tkrik]

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.

[clarkstar]

In the hospital for a few days getting steroids

[tkrik]

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.

[clarkstar]

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