Hi all, I'm new to this board. I'm sort of in limbo right now and I appreciate any and all input! A little bit of background on me: I'm 26, dx with Lupus at 16 (but basically in remission for about 6 years) and I've had chronic migraines for years that have been getting worse over the last few. About a year or so ago I started getting severe pains behind my left eye, tingling on top of my head, and I started dropping things much more than usual--I broke about 10 dishes in a less-than 2 month period. I had other symptoms including:
-Difficulty swallowing certain foods, like rice
-Feeling like I'm stumbling over my tongue when I talk
-One side of my face drooping for a few hours
Things improved for a while, except for the eye pain, which continued to happen at least 1-2 times per week, and then a few months ago other things started popping up:
-I would get ideas or images of things confused in my mind
-I drove past my own house several times, even while I was looking for it
-Felt cold water dripping on the back of my leg--nothing was there
-Had trouble with zippers
-Frequent urination
-Low-grade fevers in the afternoon for about a week and a half
-Electric feeling on the back of next and head (not down my spine)
-Overwhelming fatigue
So I finally got an MRI w/o contrast and they found ambiguous lesions. The exact language is "There are few scattered foci of T2 FLAIR hyperintensity mainly in the parietal and occipital white matter, which are nonspecific in etiology". I have chronic migraines, so they could be caused by that. But mixed with all of my other symptoms my neurologist thinks something else is going on. He, unfortunately, is moving. So I am currently waiting for a referral to a new doctor who I then have to present my "case" to, and my old neuro said to demand a lumbar puncture if one isn't ordered immediately, and then I'll have to wait for approval for that etc.
Anyway, I guess my question is just what do you think? I haven't had the big red flag full-limb-going-numb or can't-walk symptoms. And I keep writing things off in my head as maybe I was just being extra clumsy those weeks (I'm not the most graceful person)...and of course I'm tired and forgetful, I have two kids. Everyone with kids is tired and forgetful. But then the fevers, and the water drops. I don't know what to think at this point and it's frustrating having to wait so long for answers.
"Ambiguous" MRI, waiting for lumbar puncture
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wobblyandcurious
- Newbie
- Posts: 4
- Joined: Mon Mar 02, 2015 4:03 pm
Re: "Ambiguous" MRI, waiting for lumbar puncture
I just wanted to reply and lend encouragement. I'm so sorry you are going through this. Although most of my symptoms are different than yours, I related very much to your post. Hang in there! You are not alone.
Have you considered whether this could be a lupus flare? I only mention that because I know that many of your symptoms can be possibly attributed to lupus, and individual experiences with lupus can vary quite a bit. Perhaps it is manifesting in a different way than you experienced before? What do you think? Autoimmune diseases like to travel in packs, unfortunately. I have one autoimmune diagnosis and am in the ambiguous boat with you regarding MS. But perhaps this is your primary AI, lupus, making itself known again?
In terms of things you can do to give yourself a bit of peace of mind and empower yourself between doctor's visits and the uncomfortable state of waiting for answers (been there for four years now!), I recommend investigating some of the dietary and lifestyle changes that many on these boards and elsewhere have undertaken. Diet has been a huge factor for me and has helped me significantly with my brain fog and energy levels--and I find when those two items are decently managed, I can handle some of the other aspects of my mystery condition (MS?) better. Look into the Paleo Autoimmune Protocol, especially. In interacting with people in that community, I've encountered a lot of folks with MS and lupus, and many have experienced positive changes on the protocol. There are other options, too, if you are up to researching and finding what works best for you! I only endorse this specific diet plan because it's the one I've tried. It is only recently that I began to understand how much my diet—the necessary nutrients (or lack thereof) that fuel my body—impacted how I was feeling and thinking.
I hope this was helpful. I am new to the ThisIsMS community, but there are a lot of really knowledgeable folks on here, and some of them may be able to offer more specific guidance. May you find the information that helps you move forward!
Have you considered whether this could be a lupus flare? I only mention that because I know that many of your symptoms can be possibly attributed to lupus, and individual experiences with lupus can vary quite a bit. Perhaps it is manifesting in a different way than you experienced before? What do you think? Autoimmune diseases like to travel in packs, unfortunately. I have one autoimmune diagnosis and am in the ambiguous boat with you regarding MS. But perhaps this is your primary AI, lupus, making itself known again?
In terms of things you can do to give yourself a bit of peace of mind and empower yourself between doctor's visits and the uncomfortable state of waiting for answers (been there for four years now!), I recommend investigating some of the dietary and lifestyle changes that many on these boards and elsewhere have undertaken. Diet has been a huge factor for me and has helped me significantly with my brain fog and energy levels--and I find when those two items are decently managed, I can handle some of the other aspects of my mystery condition (MS?) better. Look into the Paleo Autoimmune Protocol, especially. In interacting with people in that community, I've encountered a lot of folks with MS and lupus, and many have experienced positive changes on the protocol. There are other options, too, if you are up to researching and finding what works best for you! I only endorse this specific diet plan because it's the one I've tried. It is only recently that I began to understand how much my diet—the necessary nutrients (or lack thereof) that fuel my body—impacted how I was feeling and thinking.
I hope this was helpful. I am new to the ThisIsMS community, but there are a lot of really knowledgeable folks on here, and some of them may be able to offer more specific guidance. May you find the information that helps you move forward!