Just had the worst relapse ever. Ended up in hospital for 3 days. Terrible nausea and couldn't walk without a cane. Very dizzy and off balance. Extremely tired and couldn't stay awake. Lost my appetite and lost 15 pounds in a week. Still no appetite. Never heard of this with MS. All this while getting steroids in hospital. New MRI showed 30 more active lesions in 9 months. I am trying to start tecfidera but insurance denied me. I have started to think about applying for social security disability.
Questions I have are
1. Experience with applying for ss disability
2. Experience with tecfidera
3. Is there something I can take for dizziness?
This was my worst relapse ever and it was hard. Now I don't know if I can come out of it to work again
Thanks for all suggestions or advice
Jenny
Written by
jkdavid99
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Oh Jenny, I am sorry for what you have just had to endure. I hope that the steroids help you get back to your normal or better. Praying for you, blessings Jimeka 🦋 🙏 🤗
Jenny, I’m so sorry to hear all this. Relapses are horrible! I’ve taken motion sickness meds when my relapses included severe dizziness and nausea! They worked pretty well.
So your insurance company denies the tecfideria but they’ll pay for an expensive hospital stay and MRIs??? Crazy!
Meanwhile, your MS progresses and you worry about your job and having to apply for disability. I’ve been there. Good luck Jenny! I’ll say a prayer!
jkdavid99 - Oh, Jenny! You are really being hit hard right now! So sorry to hear this. Don't give up - When you feel better appeal your insurance's decision and appeal it again. About SS Disability - I was approved the first time I tried. The instructions say it should only take minutes to complete the app. It took me weeks to be thorough. Also, it will ask you if you have asked to make concessions at work. I had asked for two - I had moved from the floor to the office and I had reduced my work week from 40 to 32 hours. Take care and feel better soon.
Jkdavid99, Jenny, first I want to say that I am so sorry you're having such a rough relapse and your Ms has gone Haywire on you. It is everyone's worst nightmare to have an MRI showing any activity level on the activity shown on yours. Go to your neurologist if they are not respectful and responding to your fears then find a second opinion now. I might suggest you call one eight hundred fight MS which is the national MS helpline. They'll give you a caseworker who will help you do everything from finding a new neurologist as close to you as possible that they call their Partners In Hope. These neurologist will never give up on you and are trained in the newest advances out there. With the disease and active lesions you are showing I would not try tecfidera because it's percentage of Effectiveness is lower than other Newark drugs out there. You might be a candidate to quickly get on tysabri which will hopefully put a halt or the brakes on your lesion activity. But there are other newer drugs out there that might benefit you and you need to be very forceful with your opinions of getting on the newest drugs that show the best results for stopping lesions since your disease so active in the past few months. Please don't mess around with trying drugs that have low percentage rates. You need help and you need help now. Second opinions are free and I sure would go after one ASAP and see what therapies or DMTs they might recommend for you.
As far as applying for Social Security disability I think that you certainly are showing extreme signs of disability and it's time to apply. Do you mind me asking you age? I went after Social Security at age 55 because at age 55 the requirements for disability had dropped again. It is a game the steak place with you and I was denied twice. The first was an actual joke to me as they interviewed me and then informed me they were finished and they quoted it wrong name to me. When I stated that that was not me they had the wrong person they said it didn't matter because the questions were pretty much very similar. What a joke our government has become for people who actually need their disability. I will end up jumping through hoops and didn't get disability until I hire a lawyer which of course then cost you additional money. My disability was then put off for another 9 months after the judge made his decision and it was absolutely horrible to try and make ends meet and wait for medical assistance I needed. The long story short again was I did receive it and it did help once I got approved and got through my wait peroid, feel free to contact me back and I'll go over more details with you as you need it. It's good to talk to you since I don't believe we spoken before. I wanted to make sure I welcomed you to this awesome chat room and look forward to speaking to you and the future. Fancy1959.
I'm so sorry you are going through this. Like someone else suggested, appeal your insurance's decision! I filed online for disability in 2008 and was approved the first time. It took me quite awhile to complete but I finally did it. My dizziness was REALLY bad when I completed my application so lots of breaks were needed and there was no way I could sit and talk to someone and try to remember everything in detail to tell them so I chose to do it online where I could take my time.
As for dizziness, I have tried meds for mine and it made it worse so I pretty much just deal with it when it arrives. It is better now than it used to be but it still there and sometimes I will have a bad day and have to take very easy throughout the day. It is usually better by evening time.
Hope you feel better soon jkdavid99 and that you get some good news from your insurance soon after you file an appeal.
Once I got my dr.to sign off on ss disability and of course contacted ss office, an agent is assigned to you,they will contact you and tell you what you need(tax returns,dr reports etc)and of course send everything cerified mail with return receipt.I was approved within 2 weeks. I was approved on Oct 1st and had a check in hand oct 15th. I had insurance at work and went out on Ltd and they told me I had to apply to ss. Disability has a scale of your condition and that's what determines how quickly you are approved. MS. is in the top 10 it"s almost automatic depending how easily you can your job. Good luck Jenny, when I was approved so quickly, I thought I am sicker than I thought! Pam
Thanks for the replies. I got my dr to sign 6 weeks of short term yesterday. I will need to do this every 6 weeks. Dr kind of acted like I would get better soon. I just dont really want to go back to trying to work when I feel so bad. I thought this would be easier than it is. I will take 6 more weeks off and see how I feel.
Jk, i am so sorry, u sure sound like it's really Progressed, might want to ask your Neuro. If u have Progressive Relapsing, whew! many Blessings to U! & go to the national multiple sclerosis association & print out the RFC form & ask them to help Fill out the disability application, I have received my SSDI in 10 months after sending in my Caregiver's, mental health therapist's & neuro's letters, it really helped. & show all your twrrible lesions & hospital stay too... I really think u'll get it! Keep us posted ok?💜💙❤💖👍😍---Bless U! ---Jazzyinco
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