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  • panthek
    Sorry for the long story, but here goes! About 2 years ago, just after Christmas holidays, I started noticing it seemed like I was forgetting a word here or there...mostly names of acquaintances, occasionally objects. And it just seemed like I was having a really hard time concentrating...both reading dense material related to work, or following long work-related conversations, etc. By March, I had started getting very infrequent migraines. I had only had one migraine in my life before this, 13 years ago. That old migraine was a classic aura with headache, but these new ones were primarily just the aura, no headache. They happened maybe 8 times between March and August. I was also just plain tired, which is an unusual feeling for me. My husband would probably normally describe me as annoyingly energetic, but no longer!

    I didn't act on these symptoms until the summer as I wanted to make sure this wasn't all in my head. I set up an appt in July with a PCP...did lots of blood work, found nothing. I have had insomnia to varying degrees for about 10 years, so she chalked my symptoms up to sleep deprivation and sent me off. After several more weeks, I talked to my PCP again, as things weren't getting any better. I told her (and I've since told other doctors) that I don't think this is sleep-related...why would I have no ill-effects from insomnia for 10 years, then all of a sudden have issues? Doesn't make sense to me.

    PCP sent me for a brain MRI, no contrast. Called the next day to say everything was normal. However, when the report uploaded to the patient profile, it noted "mild diffuse cortical volume loss." This worried me, as I'm only 35 (34 at the time) and I didn't think at my age there should be enough volume loss, especially without a prior MRI to compare to, to notice. I asked PCP about this, and she didn't know the answer, so she referred me to a neurologist.

    At my neurology appt a few months later, she noted the MRI had abnormalities in the biparietal cortex, which she believes to be a developmental finding (i.e., not related to my memory/concentration issues). After doing a few memory tests, she thought I didn't have a memory issue as much as a 'slow retrieval' of the information. She sent me to a psychologist for a neuropsychological evaluation and also referred me to the sleep center to see if they can help with the insomnia, as the neurologist also believes that is the cause of my issues.

    The neuropsych eval noted issues in concentration (varied between 95th and 5th percentile of my age/education grouping, depending upon the test). Some other tests also came back lower than expected, but he felt they were all rooted in a lack of concentration. I have worked with the sleep center and ruled out sleep apnea, improved my insomnia somewhat based on cognitive therapy for insomnia (though I doubt it will ever fully resolve), and dropped the sleeping pill I used to take (trazodone). However, cognitive issues have not resolved.

    The sleep specialist is now sending me for a sleep study/MSLT, as she thinks it's possible I have a very mild form of narcolepsy (again, I don't think so). I have since switched PCP's, as my old one moved to a different practice. My new PCP agrees with me and doesn't think this is sleep related. His current thinking is some combo of depression/anxiety/ADD. While I do have a history of depression in my family, I don't feel sad at all (just frustrated because of the extreme brain fog with no answers!). I've also been told (by the psychologist) that ADD is unlikely given I never had issues in school (and I've had MANY years of school).

    Things got a little more interesting a couple weeks ago, when I got appendicitis and had emergency surgery. A few days after the surgery, I noticed (usually when I got up from bed in the morning) what felt like a warm, wet, burning feeling on my skin above my pelvis. At first, thought I pulled a stitch, but it was several inches from one of the incisions. This happened multiple times. The weird burning/wet/warm sensation has lessened dramatically, but I still feel a mild version of it every once in a while. It's possible there is a bit of nerve damage from the surgery, but if so, would have expected to feel that immediately after the surgery, not a few days later?

    In addition to the weird skin sensation, I've also noticed what I think is mild overactive bladder (i.e., feel like I have to go when I really don't, especially before bed) and the equivalent with the other direction (sorry, TMI!). Again, possibly related to the surgery, but why did it take several days to develop then?

    Another issue I've had lately is what I think is mild vertigo. In mid-November, I kept feeling like I was leaning a bit to the left. It was mild enough that it didn't cause balance issues or anything, but was distracting. This week, I have more of just a general swaying feeling. It's mild enough that I don't see things moving, but just have a general feeling of very slight movement. Makes it difficult to read more than a few lines at a time, ocassionally makes me a little dizzy when I first get up from sitting, etc. It's bothersome enough to cause mild nausea several days a week though.

    Any chance this is MS developing, maybe with surgery/nasty infection being an additional trigger of symptoms? My MRI 1.5 years ago didn't show any lesions, but that was only 6 months after I started noticing symptoms...maybe too early? Also not sure if a 'conventional' MRI is the best way to verify there are no lesions? Maybe the atrophy is not a developmental finding?

    I'm going crazy trying to find the cause of this brain fog..getting really concerned about my future employment if this trajectory continues :( I feel like there are not that many true diseases that cause cognitive issues (neurologist assured me I don't have dementia), but MS is definitely on the list...I just don't really have many of the typical symptoms...
  • lillivonshtupp
    I empathize with your frustration, it’s scary to have changes & not knowing what’s causing it. Multiple Sclerosis means “many scars” so the good news is that MRI was clean of spots so you’re symptoms are not caused by spot development. You do not have MS. The most unnerving & frustrating thing about MS is no 2 cases are alike. There’s no 1st this happens 2nd this and 3rd that. Every case is so different & No one can tell you what to expect next. Which is why I avoid looking too much online; it’s anxiety causing & every case is different so it freaks me out more then it helps me. 

    I do have a question: did your blood work include a Lyme Disease test? I have no idea what part of the country u reside but it might be worth testing for Lyme. The “Symptom picture” is identical. In fact when my body first went haywire i got a Lyme test b/c for 3 years I only had 1 spot so they couldn’t diagnose MS b/c “multiple sclerosis” means more then 1. “You have to get worse” is never fun to hear from a doctor. But my GP was open minded & gave me a Lyme test & it was positive. I treated Lyme, which is painful b/c u get worse before you get better, until I couldn’t take anymore. I was stable for 7 years after that. So I think many, not all, but many cases of MS are caused by Lyme. It’s only recently I’ve read that Doctors are making that connection. Also they’re finding Mountain Deertick in the western half of the country, so it’s no longer an East Coast disease.

    long story longer, I don’t know what’s causing your discomfort but going by the MRI it is not MS.  Which is good news! Not knowing what it is isn’t fun and I’m sorry, but at least it’s not scars on your brain that won’t go away. 

    Whatever it is, stress makes all conditions worse. Yoga is wonderful the body and can help with balance, coordination & ease aches & whatnot. Diet can effect more then you think, you might have a food allergy. Gluten sensitivity can cause many of your symptoms. A friend was damn near crippled by gluten, cut it out of her life & she’s feeling amazing. Did you blood work look for food allergies? Might be worth exploring. Eating a clean diet can do absolute wonders & I recommend it to everyone!

    Best of Luck!

  • panthek
    Thanks for your thoughts! I did actually ask my doctor for a Lyme test (even though it was very unlikely as I live in OK)...negative. I don't really eat gluten, and haven't for years, just because I feel better without it. I haven't considered food allergies though.
  • ErinNicole
    I want to encourage you to keep pursuing a diagnosis until you really get a clear one. It took over 2 years and multiple MRI’s as well as sooo many blood test and a lumbar puncture.

    And... don’t just look into MS. My mother and best friend both have some of the same symptoms as me, but my mother has fibromyalgia and my best friend has lupus.

    i hope you get clarity soon
  • panthek
    Thanks, definitely looking and thinking about other potential fits. Other autoimmune diseases are definitely on my radar.
  • anywhereoutofthisworld
    I might suggest to you to request a brain MRI with contrast as well as blood work to rule out Lymes disease.
  • panthek
    We did rule out Lyme's with bloodwork.

    Am actually possibly having a new symptom yesterday/today? When I was at the gym yesterday, doing weights, about halfway through, my hand/wrist started tingling. I wasn't sore and definitely hadn't injured myself. At first, I thought maybe it was carpal tunnel. When I had shoulder surgery a few years ago, they had me do nerve conduction tests, and I believe they did say I had mild carpal tunnel (although it is asymptomatic so far). However, when I looked up carpal tunnel, the numbness supposedly is on the palm side and in the first 3.5 fingers. This tingling numbness is on the back/dorsal side of my hand/wrist on the thumb side, sometimes pushing up through half of my forearm. Possibly also the end of my pointer finger. It's very on-and-off though. If it is intermittent, is that typical of MS?

    Seems more like the radial nerve, but can't think of any way I would have injured it in the gym (or anywhere else). There is no pain, just some numbness and tingling. Don't think I have lost any noticeable strength with it either.
  • maria1
    panthek, if you take the thumb of the right hand and put pressure on the muscle just below the elbow of the left arm do you feel tightness in the muscle? And of course the right arm, if yes then it probably is ms, spasms that never go away and just get tighter if you do anything. The more i do the worse it gets and the only relief I get is from topical hemp oil and hemp oil gummy bears.
  • panthek
    Not sure, but don't think my arm is spasming to cause the numbness. It's actually less evident today, so who knows!
  • maria1
    Have xrays been taken? I learned I also have arthritis in my hands maybe it is just growing pains, giggle.