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And here we go.....for the 4 or 5th time?

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    And here we go.....for the 4 or 5th time?

    So to get my backstory (it's definitely worth the read) you can go here. My story is in the 1st and updated in the 11th post.

    So...where do I start. Since my last post in Sept/Oct 2013 my MRI found ON in both eyes with my left eye being more severe which is why I thought it was the one I couldn't see out of. The ON left permanent damage, but the brain MRI was clear of lesions so no MS dx. The neuro-ophthamalogist was very kind and did a ton of research and decided that this was definitely lupus coming back and since I had not been on any medications that was what caused the big flare up.

    The N-O found me a new rheumatologist who I adore and because we could not get my immune system to settle down I took 6 months of Cytoxan infusions. After that I have been on 1500mg of CellCept for the last 4 years. For about two years following the chemotherapy I did well with minor hiccups, but the winter of 2017 I began to flare up again.

    We noticed my hearing would go in and out, my neuropathy in my hands and feet would get worse, and I was just getting pretty weak and sick. My hands and feet constantly hurt and the joints just ached. So in November of 2017 I was admitted to the hospital for IV steroids (I become suicidal if I take them so I won't take it ever again). February of 2018 I began Benlysta injectables and my rheumatologist has been getting more and more frustrated that my symptoms won't go away, but the level of immunosuppressives in my system is really high and my sedimintation rate is only a 4 (since I've started the injections).

    I've been struggly quite a bit lately with a variety of other symptoms such as: my hands tingling, my back hurting, the aching, useless hands, the headaches, the cognitive fog, AWFUL word recall, and overall I'm just struggling with exhaustion and processing what people are saying. This year I've also started to have a horrible walk that people regularly comment on. They say it looks like I'm walking waddled as my feet angle outward, but I'm not sure because I've never seen myself walk!

    Since my last big flare of 2013 I took up running in 2016. In October 2016 I ran only a few times and then I didn't run at all since 2017, but this spring I've begun again this spring since when I did run I was feeling the best I had in a long time. Well, running has been really hard this round. My legs always feel like lead and I thought nothing of it because I figured I was out of shape. I did notice that when I got tired I struggled to get my right leg to lift properly and oftentimes I'd trip. So I began to modify my runs to be a run/walk combo. Like I said, I thought I was out of shape. At this point though, I'm not sure what excuse to give it.

    Last week on 7/19 and 7/20, I noticed my eyes weren't acting right. I thought it was allergies and took my allergy and sinus medication. Then I went for a run on Saturday and while running I had Uhtoff's syndrome (which I hadn't for years) and I realized in that moment that my ON was coming back. I ignored it, as I'm known to do, but on my run Monday I lost my vision during the run in my left eye and my heart sank as I knew what it was. I called my rheumatologist and told her, she freaked out and rushed me in to the neuro-ophthamalogist again.

    Of course, the Neuro-opth confirmed it ON again. My rheumatologist and he are very, very upset because the medications I am on should NOT allow ANY inflammation get through and there is something definitely wrong with me. They are now telling me with 4 (or 5) bouts of ON, we need to get a brain and spinal MRI (I've never had a spinal MRI looking for lesions) but the neuro-opth won't order it because of insurance and that for the neurologist to do it. He orders a brain and orbit MRI. When I tell my rheumatologist she says neuro will take too long and orders a cervical, thoracic, and lumbar spine. So August 10th I will be getting my brain, orbits, and cervical, thoracic, and lumbar spine MRI'd (I'll be in and out of the machine from 1-6:15pm).

    I'm feeling all sorts of emotions right now, and I'm just worn out of never having a clear cut answer. I said this back in 2013, but.....after this continuing to happen for over 8+ years and with my lupus not being symptomatically typical I'm back to thinking it must be MS. Maybe MS and Lupus, maybe just MS, but either way...something is not right.

    #2
    Hi Ferrariangel

    Originally posted by Ferrariangel View Post
    I've been struggly quite a bit lately with a variety of other symptoms such as: my hands tingling, my back hurting, the aching, useless hands, the headaches, the cognitive fog, AWFUL word recall, and overall I'm just struggling with exhaustion and processing what people are saying. This year I've also started to have a horrible walk that people regularly comment on.
    Welcome back, but sorry to learn that you have been struggling.

    Originally posted by Ferrariangel View Post
    He orders a brain and orbit MRI. When I tell my rheumatologist she says neuro will take too long and orders a cervical, thoracic, and lumbar spine. So August 10th I will be getting my brain, orbits, and cervical, thoracic, and lumbar spine MRI'd (I'll be in and out of the machine from 1-6:15pm).
    Good luck - looks like it will be a very long day for you (I really don't think that I would be able to do that), but at least all MRI's will be done at one visit.

    Let's hope you will get some answers and symptom relief soon.

    Keep us updated, ok?

    Wishing you the best.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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