Last reply 3 months ago
Had a bad week

I’ve had a pretty bad week. I have no income while I wait to see if I’m approved for disability, so that makes this worse. My hand me down wheelchair seat busted and the foot rests have been gone for a while. So I’ve been trying to find a way to get a new one, and then my situation got worse last night. Someone drove by and swiped the side of my parked car. They didn’t leave any info so now I’m scrambling to get that fixed. I started a fundraiser and I’m trying to get the word out. Please help me, even if it’s just to share or say a prayer for me. Thanks
https://www.gofundme.com/allie039s-transportation-fix

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grandma
3 months ago

@babbles89 we’re so lucky to live in the uk, but we do gave a postcode lottery (your zip code equivalent) but as a general rule we can get wheelchair repairs quite quickly, and charities tend to step in if we really struggling. Do you have any charity involvement in the USA?, will neighbours help, does your equivalent of the MS society offer any help. Been through the no money situation last Christmas when I was totally without funds apart from my basic benefit when our famous government took all my disability money away when their assessor deemed me ‘not disabled enough’ to warrant my payments which I had had for 25 years at the highest level! Work that one out, had it all returned 6 was later (it turns out it was their mistake) but having no money for 6 was was no joke. I gave an electric wheelchair, a through lift (don’t do stairs any more) a huge ramp at the front if the house, all good clues but the government is trying to save money and we’re a soft target, they hope we won’t appeal and will crawl in a corner and die quietly. I have found making as much noise as possible helps, get your equivalent of Your MP involved, get the local papers involved, anyone and everything you can think of I’m 62 and have found, as one of our Shift gurus says, it’s the squeaky wheel that gets the oil🥊😍


mlgilber1
3 months ago

Hey @babbles89!

I’m so sorry to hear you’ve had a rough week. I see that you were diagnosed this year and I was too. I had a rough summer and couple of months after. I also live in Arizona in Scottsdale and am currently unemployed waiting to see if I get approved for disability. Do you have any insurance or are you on AHCCCS? They’re pretty good about covering things. I have ahcccs and they covered my walker this summer when I was in the hospital and needed one. I will keep you in my thoughts and prayers.


babbles89
3 months ago

I have AHCCCS coverage now, but I didn’t before. I think my main problem right now is that my doctor’s aren’t fully listening to what I’m saying. I told my neuro that I was having random issues with my memory and cognitive function and she brushed it off, saying that I’m too young and moved on to something else. So far, they prescribed a cane, but that was a year ago and it’s gotten worse. I really don’t know what to do at this point, which is why I started my go fund me account and I’m trying to post it anywhere I can think of.


mlgilber1
3 months ago

@babbles89 Do you see a neurologist or MS specialist? It took a couple doctors before finding a good one. None of my doctors took it very seriously when I mentioned I was numb and tingly from the waist down, but eventually my primary sent me to a neurologist who did all the nerve testing and brain MRI. My symptoms had gotten so much worse by that point too. I was having urinary retention, felt super high and drunk all the time, and my vision went blurry in both eyes for a couple months straight. The testing all came back good and the MRI was only without contrast and I didn’t know you were supposed to have it with and without. He kept telling me it was anxiety which I knew was wrong because I used to have severe anxiety which had gone away completely since I felt heavily sedated all the time. 2 days after receiving the news everything was good I went to the ER because I was now numb from the chest down. Luckily the doctor there immediately knew something was wrong and had suspected MS. I was admitted, had all the tests done including the lumbar, and was finally diagnosed. I decided to switch to see the neuro that had treated me at the hospital because she accepted AHCCCS. She was good and took her time with me, but a month later and after being on a dmt I had a bad relapse and couldn’t move or feel my leg and had many more symptoms. She flat out told me it was aggressive and she didn’t have much experience with those kinds of cases so she referred me to a MS specialist at Barrows Neurological Institue. It was going to take 3 months to be seen so she referred me to another specialist and asked me which dmt that had a bit more aggressive of an approach did I want so she could at least get it started because she didn’t want me to wait. I got into Barrows within a week though because they have a cancellation wait list. Now I see a wonderful MS specialist who really takes his take and have a MS nurse. It’s also nice because they do labs there as well as my infusions since it’s part of a hospital. They accept that coverage and I’d suggest getting on the wait list if you’re not completely happy with your neurologist. Someone else I know was on the wait list this year, but was seen within 3 days and another guy I met thru this site is also seen at Barrows. I really do wish you the best of luck and hope things get better soon. I know what it’s like not having funds and especially at the holiday time. I have a son and haven’t done any Christmas shopping yet. Luckily he’s a sweet boy and is very understanding so he won’t get upset if it’s not like the ones he’s had in the past. Happy Holidays!


babbles89
3 months ago

I have a neurologist, the one that initially diagnosed me but he kinda acts like he still doesn’t believe me when I talk about my symptoms. I’ve been considering contacting barrow, but I have been really nervous about it. I think I will call them.

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