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  • Incredibly discouraged for the first time since diagnosis

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    Old 06-29-2019, 07:57 AM   #1
    firemom31
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    Incredibly discouraged for the first time since diagnosis

    I was diagnosed with RRMS 4 years ago and started on Copaxone right away. I had 8 brain lesions at that time. Each MRI since has been stable. I have had some decline in function, but not enough to concern me much. About 6 months ago I started having severe joint pain and stiffness, increased muscle spasms, to the point where I was crying out in my sleep and waking my husband. My neuro sent me to rheumatology. Cutting to the end result, 2 weeks ago I was diagnosed with rheumatoid arthritis with multiple organ involvement. I had my annual MRI last week and it shows over 20 lesions, so the MS is no longer stable. I'm trying to adjust to a new disease with new meds that have terrible side effects, and now I have to try to start a new MS meds that won't interact with my RA meds and deal with those new side effects. I'm already struggling to work full time, I have to make it 3 more years to have my retirement benefits, but 5 years to get Medicare. I'm terrified. If I cant work I cant get medical care (at least not the quality of care I have now). Ok, done venting, thanks for reading.

     
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    Old 06-29-2019, 03:17 PM   #2
    MSJayhawk
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    Re: Incredibly discouraged for the first time since diagnosis

    Firemom31,
    Let not your heart be troubled. RA is an autoimmune illness like MS. I would encourage you to seek disability now rather than stressing over the illness. 20 lesions are simply that, 20 lesions. A lesion may or may not be noticeable. I had to wait to get on Medicare which is not fun nor easy, but it was necessary for me because COBRA would certainly have left me destitute.

    I met a lady from AZ who was from FL. She said the desert climate had eliminated her RA pains. She was returning to FL for hospice care for her father and did not relish the impending pain. Perhaps you should look at a change in location. For me, knowing my triggers has helped. I have PPMS but no RA. I cannot speak to the RA, but there are boards here which you can reach out to.

    Some of the symptoms you are experiencing can be MS related due to 6our RA pain.

    As to the number of lesions, do not worry about the number. Many of the lesions in the brain often re-wire, that is, your body will isolate and bypass the damage. This does not happen always, but often. My own MRI is difficult for the MS Specialist to see anything because of the massive amount of lesions. With contrast she can see any current active lesions, otherwise it looks like Swiss cheese. Yet I continue to plod along.

    Learn your body’s red flags and learn to stop when needed. This can often mean the need for disability. Insurance wise a major medical policy might be affordable it is not easy waiting for Medicare, but for me, there was a clear weight lifted off me when I took disability. It was literally 2 years for me to feel better and then I had other problems. After 5 years I wanted to work again, but my MS Specialist would not approve it. I was angry until a week later when I crashed again. I was happy to be blessed with her disapproval because it set my path straight again.

    There are many things to keep me busy nowadays and time to rest as needed.

    Again, let not your heart be troubled. You are not alone
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    Old 06-29-2019, 03:53 PM   #3
    firemom31
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    Re: Incredibly discouraged for the first time since diagnosis

    I had the opportunity it to buy both short and long term disability insurance, which I did, thankfully. My biggest concern is health insurance. I know I wont be able to afford it once my vacation pay, sick pay, and employer disability run out. None of the specialists and very few PCPs take Medicaid here, so the excellent medical care I now receive will be no more. I feel stuck between a rock and a hard place. I'm barely getting through the day now. I know I am certainly not alone in this, but I don't think there's any good answer either. I'm going to ask for a handicap parking placard, and take it one day at a time.

    Last edited by Administrator; 06-29-2019 at 10:04 PM.

     
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    Old 06-30-2019, 07:03 AM   #4
    MSJayhawk
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    Re: Incredibly discouraged for the first time since diagnosis

    Firemom31, no, there is no good answer. There is certainly a gap. My doctor is attached to the state university medical school and Medicaid and other programs are readily available. In Arizona I went to the Mayo Clinic. I would certainly encourage you to have a discussion with your doctor. You might come away with help.

    A disabled placard really makes a difference for me. The nearer the store entrance the more likely I will make it some days. I wish I could tell you it will all be peaches and cream, but it will not. I would encourage you to prioritize your treatment. My MS has no treatment, so that is an easy decision for me. Because RA can be more of a threat, I would encourage you to make that your priority and do your best with the MS.

    You are not alone.
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    Old 06-30-2019, 08:01 AM   #5
    firemom31
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    Re: Incredibly discouraged for the first time since diagnosis

    Thank you, your words are always informative and encouraging. I appreciate you.

     
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    Old 06-30-2019, 09:13 AM   #6
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    Re: Incredibly discouraged for the first time since diagnosis

    Firemom, I feel your pain. I have been dx for 15 years now...and for the most part have been incredibly stable. Over the past year and a half, I have dealt with insane stress due to my father declining with Parkinson's Disease and passing last month. All the sudden every symptom imaginable flared. I work 3 jobs- and lately its been impossible to keep up with.

    Talk to your neuro. They may have ideas for you which you have not thought of yet. Also, ask if there is a disability case worker or nurse at your local hospital; you would be surprised what is out there that is not advertised.

    Stay strong. Remember, most of the time MS symptoms come and go- as do RA symptoms. My mom has RA.

    Youll have good months and bad weeks- but the good ones WILL outnumber the bad ones. Allot of it is mind over matter...and you really need to focus on the good and not the bad.

    Hugs.
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    Old 07-01-2019, 04:14 PM   #7
    firemom31
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    Re: Incredibly discouraged for the first time since diagnosis

    Saw my neuro today, and I am going to be starting Ocrevus as soon as we jump through all th he necessary hoops. Kind of scared, and kind of excited. I think it's the best choice, under the circumstances.

     
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    Old 07-01-2019, 04:20 PM   #8
    firemom31
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    Re: Incredibly discouraged for the first time since diagnosis

    I am a huge proponent of mind over matter. It is what allows me to continue working when I can barely walk some days. Once we give in, the disease wins. No worries, I will fight with everything I have and wear a smile while I do it. This is the only place i ever let my fears and tears be public, because i know you all understand. Thanks for being there.

     
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    Old 07-12-2019, 09:39 AM   #9
    firemom31
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    Re: Incredibly discouraged for the first time since diagnosis

    And now I've tested positive for the JC virus...

     
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    Old 07-12-2019, 07:54 PM   #10
    MSNik
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    Re: Incredibly discouraged for the first time since diagnosis

    Firemom, 75% of the world tests positive for the JC virus... it is alive and well in many of our bodies; it means nothing. I had the JC Virus and still took Tysabri, they simply monitor you more closely and more often.

    The number of lesions you have is still very low. I have over 100 lesions and 5 large "black holes" in my brain. I am a college professor who also works as a marketing specialist. I have no "visible" disability; although with the hot weather we have been having (its been in the 90s with high humidity) I have felt awful.

    Keep up the positive mind over matter attitude. You had a shock with this new news- but none of it is fatal and all of it is just "one more thing to deal with". You'll deal with this like you deal with everything else. I am a few years younger than you and have 8 more years to go before I can retire and trust me- I feel your concern every day; praying Ill make it and not have to file.

    Dont give up until you have to. Trust your doctors and take care of yourself.
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    Old 07-13-2019, 03:15 AM   #11
    firemom31
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    Re: Incredibly discouraged for the first time since diagnosis

    Thank you, I just need to get past these rapis fire punches and make a new game plan with my doc.

     
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    Old 07-13-2019, 11:08 PM   #12
    MSJayhawk
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    Re: Incredibly discouraged for the first time since diagnosis

    Firemom31, when I last saw my MRI with my MS Specialist, she said thank God there is contrast because your brain is like Swiss cheese. There were too many lesions to count.

    As to JC, welcome to the majority. If your doctor monitors you and you learn the signs to watch for if you are doing meds, then you should be fine. You just need to weigh the risks.

    Be strong, you can do this.
    __________________
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    MS onset circa 1977
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    Eternally blessed and eternally optimistic!<><

     
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    Old 07-14-2019, 01:40 AM   #13
    firemom31
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    Re: Incredibly discouraged for the first time since diagnosis

    Thanks, I appreciate the words of encouragement. My doc already said none of the infusion drugs and we will discuss options when I see him. I think it's a bit challenging because of the RA meds. I've had a lot of time to think today, and I'm going to talk to my doc about what kind of MS I really have. I've never had a remission since I was diagnosed, and now this progression in lesions and symptoms. I know that the number of lesion don't matter per se, but the sudden progression seems worrisome. I'd rather know exactly what I'm dealing with.

     
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