3:30 am and so frustrated

[Joliona]

Hi all, am new here. I have been reading some of the posts and just need to vent. I am just so sick of being an anomaly... a medical mystery.... I have great docs and so supportive, but they are all specialists and my primary care doc just throws his hands up in the air about me. So, here is some of my story, since I'm in so much pain and took a percoset and they keep me awake but in zombie land, I hope this is understandable. I was diagnosed with MS in April of 2012. Then went to the MS center because the dx wasn't really clear (too few lesions, but many O-bands), and they confirmed it in July of 2012. Then over the next year I proceeded to have extreme bradychardia (slowing of my heart) and had an emergency pacemaker implant. During this procedure they found an aortic root aneurysm that appears stable, but unrelated to anything else. Then I had a blood clot in my arm. Then a couple months later a very large kidney stone that needed to be removed surgically. Then about 6 months ago I had a pulmonary embolism, then another huge kidney stone. Last month I started having some severe chest pain and was in the ER twice.... It's almost funny how my history freaks out the ER docs. All cardiac causes were ruled out and I was left with probably "MS hug" as a dx. My neuro agrees and wants to get an MRI of my t and c-spine. Well, guess what..... my MRI safe pacemaker is good to go for a brain MRI, but not for anything between the cervical and thoracic areas because they have to position me differently in the machine. I found one hospital radiology center that 'might' do it but since my cardio is not based at that hospital they have to get someone from cardio and from the pacemaker manufacturer to agree to monitor me during the MRI which because of the position may not yield "optimal" scans anyway. Just not sure it's worth it. Has anyone heard of PET scans being used to look for lesions? My research has shown a few hits on that.... but mostly on mice.
So tonight.... was feeling better the last three days then today got blasted again by chest pain and pressure radiating around to my back .... stabbing pain in my left calf (my right leg and hip is usually the culprit), numbness and heaviness in both arms and hands. My tongue is even numb. And I can't seem to completely empty my bladder. I should also let you know that my stress level outside of the physical is SO extremely high so my neuro is not surprised at new symptoms. And my cardio is thrilled that my heart looks really good.
I just needed to vent and hope for sleep to come... sometime before dawn.
Thanks for "listening"

[HVAC]

What helped me was going to a pain clinic. With MS there is nerve and muscle pain. Percocept really does not address either. It took a few months for them to get me on the right drugs for me. Each person reacts differently to pain medications there is not one that works with all MS patients.

Alex

[PastorDan]

You know better than I that such symptoms are probably nithing to dilly-dally around with.  I am sorry you are suffering so, and that I have no medical advice for you.  I will pray that you get relief and acvurate diagnosis, and soon.