Pain, tingling and fatigue

Posted by cmccaffe81 @cmccaffe81, Apr 22 12:48pm

Hi I have been to so many doctors/specialists for almost two years trying to find answers for my tingling, fatigue and pain. PCP, chiropractor, spine doctor, two rheumatologists, neurosurgeon, neurologist. Two years ago i had our last child after multiple miscarriages and then IVF, along with a difficult pregnancy and birth. Two months later i got horrible spasm like chest pain in the middle of the night while i was up feeding the baby. It was so bad i called 911, they took me in to get checked but my heart was fine. (I had preeclampsia with that last pregnancy so they did an overnight observation) i had had pains like that in the past but they did not last as long. After this issue i started having tingling in my mid back off and on when im doing an activity where im slightly leaning but also using my hands. i also developed more neck pain then usual and pain in my arms around my elbows (not necessarily my elbow joint) and also a face rash . I went to a chiropractor that didnt really help. My dermatologist checked my ANA which was a low positive titer and he said prob not lupus, rheumatologists also said not lupus because the rash didnt go in the folds of my nose. Next i went to the spine dr after my first MRI, he gave me a steroid shot to the beck, it helped my neck some and my arms tremendously however the tingling in my back actually flared from it. Once it wore off it all came back. I mostly feel the pain in my arms when i’m using them and my hands in conjunction, like carrying bags, lifting 8lb dumbells, using a shovel, drinking from cups etc. i’ve had two episodes of tingling in my hands early in the morning out of nowhere and one episode of finger fasculations on my non dominant hand. I had tingling in my feet a few times and my calves but that has stopped. My right leg buckles frequently way more than in he past. I’ve had tingling and numbness in my left thigh for years. Ive had issues using utensils at times when eating or shredding meat, my hands cramp up along the pinky sides on both hands. I can not text or write for long periods like more than 5-10min (been years for this but never saught a doctors opinion) I also have difficulty chewing certain things, my jaw muscles get tight.
I went to a neurosurgeon to see if he could fix my neck hoping that was the cause of my issues but he said my neck wasnt bad enough, but when looking at my MRI he said a white area on my spinal cord and thought maybe i had MS or something and sent me to a neurologist. Neurologist was not helpful at all, did not check my brain or order any additional testing. He saw my second mri which didn’t show the white area on my cord and wouldnt look at the original at all! His answer was treat my symptoms with no diagnosis like it was fibro but that it wasnt fibro…oh i also had a normal emg of my arms and left leg. Im at a loss and want to give up any hope of figuring this out. Has anyone has this experience? Sorry its all over the place I was trying to think of everything at once, I know i’ve missed some details.

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Yes in my journey i saw a spine doctor he wouldnt say that that was def my root issue because the mri report said mild stenosis. I also saw a neuro surgeon who wouldnt touch me, said there was not enough damage for surgery at that point. And yes i do have all of those issues 😕. Ive seen so many doctors and no one has given me any reason for anything yet

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@dlydailyhope

@cmccaffe81
Your MRI looks like you have some compression of your spinal cord around C2-C3. Do you have any pain, numbness, weakness in head, shoulders, neck, arms, hands or difficulty walking, with handwriting, dropping things, or controlling your bladder? The reason I ask is I was diagnosed with cervical spondylitic myelopathy at C5-C6 and had ACDF surgery to decompress my spinal cord. My spinal cord was being flattened due to spinal stenosis and degenerative disc disease and caused many symptoms below the spinal cord compression. Myelopathy is injury to your spinal cord. You should see an orthopedic spine specialist/surgeon for their opinion if you haven’t already. It is a serious issue that can cause paralysis if not addressed.

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I replied but i dont think it tagged you

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@cmccaffe81

Yes in my journey i saw a spine doctor he wouldnt say that that was def my root issue because the mri report said mild stenosis. I also saw a neuro surgeon who wouldnt touch me, said there was not enough damage for surgery at that point. And yes i do have all of those issues 😕. Ive seen so many doctors and no one has given me any reason for anything yet

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@cmccaffe81
It sounds like your symptoms need to be heard by a spine specialist who cares to listen and looks beyond the MRI alone. Did you get contrast with your MRI? I had to “fire” my neurologist and saw multiple spine specialists and a neurosurgeon who dismissed my symptoms and ignored my MRI which showed spinal cord flattening. I almost gave up but thank God I went to a 4th spine specialist who I found online with many high ratings from patients who went to him. The day I first met with him, he had me walk which showed my imbalance, tested reflexes and listened to all of my symptoms (was especially locked into and interested in my feeling like I was wearing cement boots when I walked, lost control of my bladder, had handwriting/fine motor skill decline, was dropping things I picked up, etc.) and immediately diagnosed me with cervical myelopathy. I finally felt validated for all of my suffering! He wanted to do surgery ASAP to stop the damage to my spinal cord and stabilize it because if I fell I could have been paralyzed. I was able to regain control of my bladder, the cement boot feeling was gone and my dropping things/handwriting improved. Don’t give up advocating for yourself!

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