Hi everybody!
Again, a call for all of you current or former Limbo-landers:
I am getting to the end of my rope physically and I am having such a hard time dealing with not being able to have any treatment for my "mystery disease" until I have a diagnosis!
I just seem to be getting worse and worse and my doctors are just shrugging shoulders and looking pensive.
I am in the care of a PCP a neurologist and rheumatologist. The rheumy is busting her chops for me (for which I am really grateful) but she keeps coming up empty handed.
Since my brain MRI (with and w/o contrast) and my c-spine mri (w/o only) are clean and the lumbar too everybody's in a quandary.
Meantime I feel like I am stuck in a never-ending Flare of Crappy-ness and medically speaking: nothing is happening. Nada.
Currently I am losing more and more ability to walk, (due to muscle weakness, balance issues and some spasticity) my right arm and foot have transitioned out of the reduced sensitivity/pin & needles numbness pain crap into a completely numb phase and sometimes I cant *gulp* pee properly. (this is also just mentioning the big stuff, I dont even wanna start on about all the bits and pieces of the little everyday annoyances, but I'm sure you all can imagine)
This whole thing has been going on since the middle of May and since I dont dare to hope for an answer to the big questions, apparently I dont get to any helpful meds or support either. My PCP is lovely but wants the specialists to take care of things, my rheumy is testing and testing and testing and the neurologist wants to "see how things unfold"
But things are unfolding and IT IS NOT FUN.
*for background: I have been in rheumatological treatment for the past 4 years for a rheumatic condition (severe joint pain, in flares) I now, apparently, never had. (according to my new rheumy)
Last year I developed the first obvious neurological symptoms which I dismissed (trouble walking and some slurred speech). A few curious experiences this past winter got my attention (hot patches on my skin, buzzing in my legs and balance issues) and then things got serious in May: I couldnt walk very well for a couple of days and then following the subsequent LP I suffered from strong spasticity and mind blowingly painful spasms in my and all kinds of other scary stuff.
I have been all over the place health-wise since then. I keep getting new symptoms.*
I guess what I want is some sort of treatment to help me move out of this. While I was being treated for the joint pain at least I received oral steroids. The dose was low and I really felt like if they had been higher I really could've have kicked the flare, but my dr. was very conservative and didnt want to up the dose too much.
I could really notice it sped up recovery time though, and I really could do with some of that now....as it stands I am not even getting baclofen for spasticity or at least a free kitten for being strong
What do I have to do to get treatment?!?!
(so I can stop whining?!)
Again, a call for all of you current or former Limbo-landers:
I am getting to the end of my rope physically and I am having such a hard time dealing with not being able to have any treatment for my "mystery disease" until I have a diagnosis!
I just seem to be getting worse and worse and my doctors are just shrugging shoulders and looking pensive.
I am in the care of a PCP a neurologist and rheumatologist. The rheumy is busting her chops for me (for which I am really grateful) but she keeps coming up empty handed.
Since my brain MRI (with and w/o contrast) and my c-spine mri (w/o only) are clean and the lumbar too everybody's in a quandary.
Meantime I feel like I am stuck in a never-ending Flare of Crappy-ness and medically speaking: nothing is happening. Nada.
Currently I am losing more and more ability to walk, (due to muscle weakness, balance issues and some spasticity) my right arm and foot have transitioned out of the reduced sensitivity/pin & needles numbness pain crap into a completely numb phase and sometimes I cant *gulp* pee properly. (this is also just mentioning the big stuff, I dont even wanna start on about all the bits and pieces of the little everyday annoyances, but I'm sure you all can imagine)
This whole thing has been going on since the middle of May and since I dont dare to hope for an answer to the big questions, apparently I dont get to any helpful meds or support either. My PCP is lovely but wants the specialists to take care of things, my rheumy is testing and testing and testing and the neurologist wants to "see how things unfold"
But things are unfolding and IT IS NOT FUN.
*for background: I have been in rheumatological treatment for the past 4 years for a rheumatic condition (severe joint pain, in flares) I now, apparently, never had. (according to my new rheumy)
Last year I developed the first obvious neurological symptoms which I dismissed (trouble walking and some slurred speech). A few curious experiences this past winter got my attention (hot patches on my skin, buzzing in my legs and balance issues) and then things got serious in May: I couldnt walk very well for a couple of days and then following the subsequent LP I suffered from strong spasticity and mind blowingly painful spasms in my and all kinds of other scary stuff.
I have been all over the place health-wise since then. I keep getting new symptoms.*
I guess what I want is some sort of treatment to help me move out of this. While I was being treated for the joint pain at least I received oral steroids. The dose was low and I really felt like if they had been higher I really could've have kicked the flare, but my dr. was very conservative and didnt want to up the dose too much.
I could really notice it sped up recovery time though, and I really could do with some of that now....as it stands I am not even getting baclofen for spasticity or at least a free kitten for being strong
What do I have to do to get treatment?!?!
(so I can stop whining?!)
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