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Need some BTDT advice, symptoms increasing past MRIs neg...
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jules1202 posted:
I feel like a frog swimming in a pot of water and the water is starting to boil at this point - I have been having significantly increasing health issues the past few years and seeing a bunch of different drs for the different issues usually hearing how they don't see these issues in someone in their 30's... It never occurred to me it could be MS until a few weeks ago after my neuro appointment. I see him for migraines and when he first started seeing me he gave me an MRI and when it came back clear he said "Good, I was really afraid you had MS" which I shrugged off b/c I have had 3 MRIs since age 24 (I am 37 now) because they were concerned about my neuro state and all came back fine (I have clonus in my ankles and hyper reflexes but wasn't having anything but joint/arthritis/migraine issues till recently).

Now apparently my reflexes are worse and whatever eye test they do with the light is worse because last migraine appointment dr was considering doing another MRI but when he asked about if anything had changed I was having a bad migraine and fatigue and thought question just was related to migraines so I didn't tell him about all my episodes of week long fatigue where I have to nap at work, the fact that my constipation is so bad I have been living off miralax for over a yr (per advice of gastro dr who had no idea why), and the fact that my bladder hasn't been working right at all for about 6 months (and bad episodes of vertigo) and a few times a month my right leg will just suddenly drag while I am walking. Also when I started going to see him I was having problems where the surface of my arms and left side of my face would go numb (thought it was migraine related) but now the last few weeks its started to be the right side of my face and my legs instead.
Per the advice of his nurse I have since sent him a letter explaining all these things I forgot to tell him (my brain is such mush lately I literally have to study my headache notes before I go in) but its been a week and I have yet to get any response.

Main question, anyone had a similiar experience with years of MRIs being clear and then something does show up. After 3 past MRIs that were all clear part of me feels like it will be another wasted test.

Thoughts? Thanks for reading my long rambling post if you made it thru!
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hackwriter responded:
Jules,

Have you had a spine MRI? Diagnostic testing for MS should always include the cervical MRI. I had no brain lesions on my first set of MRIs, but I did have two cervical lesions. If you haven't had a spine MRI, press your doc for one. Other tests for MS include evoked potentials and a lumbar puncture.

I imagine your doc is doing MRIs to rule out other conditions such as Chiari Malformation. That condition can affect bladder, bowel, balance, and legs since it involves the spinal cord. So can Multiple Sclerosis. This is a tricky one, several conditions can cause your symptoms. Migraine, like MS, is a diagnosis of exclusion. There is no one definitive test to diagnose it.

Among MS patients, it is possible to have clean MRIs for a long while before lesions begin to show. This is partly because of the limitations of MRI technology. We have gray matter damage as well as white matter, and the machines tend to be inadequate in picking up the gray matter damage, not to mention the smaller, scattered white matter scars. Doctors usually won't diagnose MS in the absence of brain or spine lesions.

I hear your frustration and totally understand the anxiety that accompanies a health mystery. The only advice I can give is to see another neuro for a second opinion. Better yet, find an MS specialist. It might ease your mind. Good luck.

Kim
 
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jules1202 replied to hackwriter's response:
Thank you for the information and the encouragement Kim.


Friday after I posted this I finally talked to my neurologist office and they are referring me to a Neuroscience Center at the Medical College of Ga for more testing (originally they suggested Emory which is closer but its not on the preferred provider list). So I am praying they can help me find some answers. Til last yr the progression of health issues was slower but this last year has been one issue after another with shorter good periods in between and I am struggling to keep up with work and my kids.


I know my first two MRIs were full MRIs because they included references to the degeneration in my spine but I am not sure about my last MRI a yr and a half ago.

Stupid question (sorry!) - when you say cervical MRI do you just mean the neck or the whole spine? I know my last MRI did at least include my neck because then they referenced the herniated disc and arthritis in my neck but made no reference to anything lower (quite depressing "how" I remember this stuff at 37 and worse that the original MRI showing degeneration in multiple disc in middle and lower back was at age 24 - I was in the military before that)
 
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hackwriter replied to jules1202's response:
Hi Jules,

Cervical refers to the neck only. Thoracic refers to the middle portion of the spine, Lumbar is the lower back, Sacral is at the bottom.

I also have a herniated neck disc, as well as an arthritic lumbar spine and bulging discs from top to bottom. Degenerative spine disease can cause many of the same symptoms as MS. My first set of MRIs showed the herniated neck disc--and there was a lesion in the same place. My neuro could not determine whether the lesion was MS-related or a result of nerve compression from the herniation. This contributed to the six-year delay in my MS diagnosis. A lumbar puncture positive for O-bands finally convinced him I had MS.

I hope you'll soon find some answers at MCG. And please do give us an update. I hope it isn't MS, but if it is, you'll find a big network of support here and elsewhere in cyberspace. All my best to you.

Kim
 
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jules1202 replied to hackwriter's response:
Thank you Kim, you have a great ability to break the complex down to simpler more understandable terms!

Right now I have a appointment at MCG for 24 July 14 (which is 3 months from today), ack! I was very discouraged when they said that is the first available but they said I can keep calling to see if something comes open sooner. I am hating the idea of just sitting on my hands in limbo for 3 more months especially since I have been developing so many new issues lately (which is what drove me to push for help). My right side of my face is almost constantly numb as is my right leg and I have had a bad problem with twitching leg muscles for a few weeks now that has increased slowly from just weird to downright painful last night.

My neurologist is going to call MCG and see if there is any way to get me in sooner. I am wondering if it could be something like a totally pinched nerve (possible??) that causing all this new numbness and stuff but I am not having any bad neck or back pain; most of my pain is in my face and my leg.

Thanks for listening to me ramble from the land of undiagnosed feeling slightly crazy limbo.
 
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hackwriter replied to jules1202's response:
Jules,

Have you asked your neuro about medications that might ease your pain and restless legs? You don't have to have any particular disease diagnosis to take such medications, and they could make you more comfortable while you're waiting to see the folks at MCG. Just a thought.

Kim
 
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jules1202 replied to hackwriter's response:
Thats sounds like a good idea! I am so used to being in pain between migraines and arthritis sometimes I just automatically cope with pain instead of seeking some help. Most of the time lately its minor, just lots of twitching. Its just been overall getting painful a few times in the evening the last few days and my darn rt leg is just numb enough to throw off my gait so my knee is hurting. Very minor in the big scheme of life.


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