So, I don't post much but I have a question that's driving me crazy. Literally, I feel like a hypochondriac! I just got my MRI results for my yearly MRI. And I SHOULD be thrilled. No new lesions since August of 2017. Good news, right? So then what is causing my cognitive decline, serious chronic headaches and most recently and fairly new to me - wicked eye pain...behind my eyeballs in my head? That's the best I can do w/ that explanation. My legs are getting weaker - thank goodness for my AFO's - and my emotions are so up and down. And the fatigue....no words...This is all in the last year. I've had my first SERIOUS pseudo-exacerbation last month from the heat - I won't go blueberry picking w/out my vest on EVER again. It was down right scary and embarrassing. And blah blah blah complain complain (that's how I feel). IF I don't have new lesions, why am I still continuously consistently feeling like I'm getting worse? Am I seriously crazy?????
No new lesions....?: So, I don't post much... - My MSAA Community
No new lesions....?
You’re not crazy. Old and inactive lesions can still cause issues later on or when stressed. Some new lesions might not be detected on the MRI. Have you had a chance to talk with your MD about the results and new complaints over the past year?
You’re not crazy!
Thank you 
Yes, I just saw her a few months ago. She started me Ampyra for my legs. I stopped it after 8 wks. I had every side effect possible! As bad as I felt before Ampyra and after, it was doubly worse while on it. My Mom actually moved in with me to help! I love my "Mommy"...I'm 47, married and raising my own children and my Mom is still my strongest and best support. She's awesome
Aww, I love that you’ve got a wonderful mom to help you and hat you are able to raise your kiddos 😍 Is there a plan for something else since Ampyra was a nightmare?
I am so wicked fortunate to have such an incredibly loving and supportive mom. We never went thru those teen yrs of "the battle of the wills". We've always been close. She calls me her Sunshine and she is my Closest & Best Friend. She keeps me in check, like a Mom should but she's my shoulder to lean on and my biggest supporter. She'd move yhe Earth for me and vice versa. Yes, we have our "moments" but who doesn't?
As far as the AMPYRA...thus wkend of shopping had me thinking that I think the Ampyra might have been working. My legs were SO fatigued after just walking thru the pharmacy and then walking into a Thrift store.
That being said, I felt so horrible being on the Ampyra. Physically and mentally/emotionally. So unless there an alternative to Ampyra, I'm good right now with what I'm working with. If y'all have heard of alternatives, please let me know. Physical therapy and exercises do not do anything but fatigue my legs further. Craziness. 😑
I don’t know of anything else for walking, but maybe someone else does.
I have read articles and had my neuro tell me as well that MRI’s dont show gray matter. Gray matter controls cognitive function - i am not a doctor so please dont take this as medical advice - but u may wanna check it out or ask ur neuro.
I have been having headaches - migraines- and mood issues so i had my pcp do a hormone panel. It all came back to estrogen issues. But i also had a complete hyst 8 years ago. So not sure of ur situation but it cud be other things unrelated to MS u may wanna see an eye doc and a pcp to see if there r other causes of ur distress.
And talk to ur neuro abot ur cog issues. My neuro made me feel so much better abot mine
Thank you That is very good info on the gray matter...I think I've actually read that somewhere but of course I don't remember fully, lol. I had my ovaries removed. One 10 yrs ago, which is when my first symptoms really kicked in, the other 5 yrs ago. I went downhill after that. I don't refute that there is some connection there. I did just get all my hormone levels checked, thyroid and other labs. Of course my Vit D was low, nothing new there. But everything else checked out okay. Apparently your uterus generates hormones (never knew) so I couldn't go on hormone replacements, back then, but they did put me on a super low dose B.C. pill to help w/ the hot flashes and transition through early onset menopause.
I've seen the speech/cognitive therapist a few times and also had the testing done w/ the Neuro Psych (can't remember what she was called) I thought I did fabulous. Finished an HOUR early. I've always tested well through school etc, so I was pretty confident. Apparently over confident, lol. I didn't do so well, lolol. She said cognitive and memory findings were consistent w/ an MS diagnosis. I was dumbfounded.
As far as the sharp pain behind my eyes....I can still see. And I hate going to doctors unnecessarily. Ironic I'd get a chronic illness (which I irrationally think I'm going to be told that they made an error in my DX at every visit!). I guess I'm just a head case at this point, literally! I know I have MS because all the testing points to it. I wear AFO's for heaven sake! But I fear I'm going to go in and have them say nope, you don't have MS and I'll be right back to square one 10 yrs ago.
Maybe this is why I don't speak up much on here.....I can't say anything in less than 1000 words! Thank you so much for the info and sorry for the babbling!!! 
Its not babbling no worries! Its good to get this stuff out of ur system. And get feedback.
The eye doc may see something that was missed elsewhere. Its amazing what they can see! I have most of my lesions on my occipital lobe so it effects my vision and they can actually see them! Its so weird! The pain behind ur eye cud be something they will notice and can help fix.
Cassielynn71, it's Fancy1959. Have you spoke to your neurologist yet about what you think are your worsening symptoms and increasing disability? If not you need to give them a call immediately. We are not doctors here and we can only give you similar experiences and what we've done but this calls for your neurologist involvement. Believe me they want to know what's going on with their patients in you are the best Advocate you have for your health! Make yourself up a login you Journal each and every symptom is getting worse for you so you do not forget to discuss everything with your doctor. Ask the same questions to him that you asked of us. We all have bad days and when we overdo it on a certain day be it by heat like your blackberry-picking episode or simply doing too much. I know when I do silly things like this I tend to pay for it sometimes for the next couple of days or maybe even a whole week until my body levels out and says it's okay and I'll come back to normal again. Or should I say it will come back to my MS normal again. I hope this helps. And please let us know as soon as you find out more from your doctor what's going on.
Thanks@Fancy1959 I do have a follow up in October. If anything drastic happens like I lose vision in an eye or I get the total numbness or can't walk, I assure you I will call IMMEDIATELY. And as disorganized as I am, last week I downloaded a symptom tracker FINALLY. Because yes, I always forget something when I see her. Shocking, I know, lol. I just really want to make sure I'm suppose to feel crappy, lol. Fatigue is the worst...which I do know is fairly normal. I seriously expected to have some progression on my MRI and when nothing showed I questioned my mental stability. I promise you I am sane...I think, lol. Sigh......I just want to wake up one morning feeling refreshed and happy and full of energy like the good ol' days
If u lay in bed wen u wake up and keep ur eyes closed and cuddle with a pet, husband or pillow (i prefer to cuddle my dog - my man is not a cuddler) u can hold on to that “i am still me” feeling for awhile. It puts me in a better mood for the rest of the day even wen my symptoms are all whacky. 😁😁💜💜
I love the warm cozy happy feeling your suggestion conjures in my head. Thank you for that! Tomorrow is my "sleep in" past 4:30am day and that is exactly what I'm going to do. My hubby sleeps in another room since he's a wicked insomniac and HAS to have a TV on. That and the our 4.5 yr old little girl sleeps w/ me along w/ our two doggies, lol....There simply isn't room for him!
My man has to have the tv on to sleep and snores horribly so i feel ya. We have separate rooms as well. My furbabies r better to sleep with 🐾🐾🐕🐕
Agreed!!!!
No, you aren't crazy. No new lesions does NOT mean your disease won't progress. That is what it does. All forms of MS progress it's just that some types never go into remission. That is the type I have. I also have had any new lesions in over a year, but my walking is getting worse. I wish you the best and deal with your brain fog by going to lumosity.com and playing the brain games on there. Your mind needs a workout just like your body.
That does make me feel a little more sane. And YES! I do the Luminosity too!!! The brain therapy lady (drew a blank on what she is!) told me about that and I also do word scramble games, Sudoku, and Spider Solitaire. Also timed Mah Jong (spelling?). And I've learned that I need about an hour of quiet time to do these in bed before we go to sleep. If I don't get that hour of peace my anxiety is no Bueno!
I have been dx w/ relapsing remitting and I've been on Copaxone for exactly 2 years now. It's only been 2 yrs and 2 mos since my formal dx. However as it is for almost all of us my symptoms and run of visits to specialists started almost a decade before that. It's crazy because I can't tell if I'm actually getting worse or just more aware now that I know what I have. Even though I still feel like I don't have it....Again, yes I know I SOUND crazy so imagine how I FEEL! Lolol. My neuro suggested an MS support group. I said I have one....here. I see the articles discussing the stages one may go through after the initial dx...One of them is denial. I feel like I have two brains, one that accepts and one that refuses to believe and they are in a constant heated battle....Sigh.....someday they'll declare a truce
Another factor in cognitive issues is brain atrophy—the MS brain shrinks at a faster rate than non-MS brains do. This can be seen on MRIs but, at least so far, I haven’t seen it mentioned in my MRI report; it was my very sharp NP who pointed it out.
There are some new advances in brain scanning that will probably take a few years to become standard practice, but they involve computer programs that can pick up very minor changes in MR images—things a radiologist can’t see but that would indicate changes in the brain.
Oh, another brain game app that I like is Peak. Anything we can do to keep our brains active is a good thing. I’ve been told to try learning new skills, too.
You got the brain doctor’s name right in an earlier comment—neuropsychologist. 🙂
I get the ridiculous headache 🤕 with the pain behind my eye also. Don’t know what causes this . No you are not crazy.
I'm sorry you get the pain behind the eyes Babslover and cassielynn71, I get the same thing behind both eyes and it shoots to the eye! I was DX'd in 2012 but had this before in the right eye with vision trouble since 2004 but Providence st Vincent's Portland, OR couldn't DX a bee sting! The last MRI I had there, my in 2017, my Optic nerves are trashed! That is from years of neglected, undiagnosed Optic Neuritis!
Again, I'm sorry, it can also be temporal lobe lesions.
KJMac
Temporal lobe lesions? Do they show in the mri's?
They can but not but not always! Depends on the person too, I don't show many lesions for my disability. I have Chronic fatigue, pain and most all symptoms, I think I was DX'd with RRMS 1. So I could be put on medications 2. Be put on their Tecfidera trial when it came out. A prior MS Neuro thought I had PPMS, I left her because she wasn't getting any testing done/scheduling!
cassielynn71 Welcome to the club! No, you are not a hypochondriac. You do not have an overactive imagination. Your perception of your reality is accurate. I was diagnosed in 2010 with lesions on my brain and spinal cord...and no new lesions since then. But the damage done by optic neuritis has continued, my gait is more and more impaired, every symptom and pseudo exacerbation that I've ever experienced occurs more frequently. But because they are almost always fleeting, never lasting long enough to be observed by a doctor, they have been dismissed, leaving me feeling as if I am crazy.
Yesterday I saw my PCP for a knee problem that has plagued me for more than two weeks. I tried to explain to her that the weakness, stiffness and/or pain will disappear for hours at a time (I take nothing for pain, not even aspirin) only to return for a half hour in the middle of the night, then disappear again. She tried to tell me it is osteo arthritis and I tried to tell her that this has happened every once in a while since my 20s ( just not for such a long period of up and down). The last time this happened, before MS was diagnosed, was in 2003. My doctor then sent me to PT to strengthen the knee; the PT said my knee was strong and didn't need strengthening. I've had arthritis in one knee for almost 60 years without knowing it? I do have osteo arthritis in my cervical vertebrae and in all the fingers of both hands. I am never without compromised range of motion in those affected joints. I know what osteoarthritis feels like. Why can no one trust me that this is different? In two years I will be 80...now, I ponder how I will manage then. You are not alone.
Could the knee pain be MS?
Lilith08 I think so, but my PCP is skeptical. I wasn't able to see my new neuro. I spoke yesterday with a nurse in the MS clinic and when this happens again, they made a note to see me at the onset.
That’s my guess, too. PCP and regular PT are unlikely to be familiar with the ins and outs of ms.
I’ve had mysterious pains that I now think were MS-related. For a few months my hips and thighs ached at night and I swore I needed a new mattress. Fortunately I don’t have the money to buy new beds willy-nilly because the pains went away and I’ve not had them for at least 3-4 years!
Back to PT—over the years I’ve been to regular PT for mysterious “injuries”. Lots of strengthening suggestions, naturally. Last fall I saw an MS PT for spasticity and now that I know about sloooow, gentle stretching, I believe a lot of my earlier issues were tied up in spasticity that I didn’t know I had.
Oh my goodness goatgal , first, let me start by saying THANK YOU! And second, I am so sorry and totally understand when doctors second guess or brush of your knowledge of your own body! It's so frustrating. I currently have two pairs of glasses. Old script and new script. New script worked great for abt 3 wks. Then BAM! I can't see out of them. I wear my old script now. Again. Told my neuro and she seemed all bewildered. Like "huh, that's strange". Really? Whatever. So yah, Dr's can suck sometimes. Lol. Thanks for making me feel sane😊
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