What's next?
Posted: Mon Oct 03, 2016 10:50 am
Hi all,
I'm going to try to make this as abbreviated as possible (although I'm sure you're all well aware of how long of a process all this is lol) But I'll try to just hit the hilights.
PCP ordered a brain MRI (with and w/o contrast) and referred me to a neuro because PCP had concerns of MS due to increased frequency and severity of neurological symptoms which he felt mirrored a lot of MS symptoms. (I was only sent to the neuro after the PCP did a lot of labs, then sent me to a Rheumatologist for a thorough work up. And she was incredibly, incredibly thorough. But everything kept coming back normal, but my symptoms kept rolling in.
**Little history--I have random, week long periods, of almost debilitating facial neuralgias. Normally it's occiptial, but have had trigeminal as well. They would occur years apart, first time happening at about 16-17 years old. I've also had very mild wide spread parasthesias, weakness, numbness/tingling, nerve pain just randomly throughout my body throughout adolescence and my 20's. They were very mild and not constant.
I had an "attack" of facial neuralgia last November that sent me in to my PCP after a few days because it was the worst it's ever been. Accord to the Dr., the nerves that appeared to be involved were occipital, trigeminal and glossopharyngeal. All at the same time, it was terrible. Since that point, I had symptoms coming and going for about 3-4 months. I had a tendency to get dizzy pretty easily and off balance very easily and I was always so tired that it physically hurt, but those were the only constant symptoms. The others would come and go over those few months, it just felt like it was always something. Urinary issues, limb weakness, numbness, tingling, pain, etc.**
So that original MRI that was ordered last year showed one small T2 hyperintense white matter lesion. (subcortical maybe?) (sorry if my terminology isn't quite right. That was almost a year ago and I don't have the report in front of me. Due to it only being one lesion, and a small one at that, my neurologist didn't think it was MS related so she didn't want to do any further testing for MS. She, at first, wanted to order a slew of bloodwork to rule out B12 deficiency, thyroid issues, other vitamin deficiencies, etc--but those had just been completed with the rheumatologist and were all normal, so I had those labs sent to her. So, since she didn't believe it was MS, her next step was a Nerve conduction study and EMG (ouch!) to rule out peripheral neuropathy, disc disease, etc---well, there was one muscle that had an "abnormal interference pattern" for the EMG, but she deemed it a normal test.
I've not seen her since then. Just because everything was coming back normal and I didn't want anymore testing done. And more importantly, the majority of the symptoms had alleviated by that point. Most of the tingling, numbness, etc I can handle (except for those facial neuralgias; Thank goodness they occur infrequently bc those are terrible) but the worst part really is the fatigue that comes on with all those symptoms. I get so tired that it physically hurts and takes everything I've got just to do basic tasks. It's like a terrible hangover too, when I don't even drink. and it's so obvious when that fatigue starts to ease up. So since it was all seemingly better I chose to take a "watch and wait" approach. Hoping it was just a fluke.
So I go several months relatively symptoms free. (still getting the symptoms some, but infrequently and much milder). Then toward the end of summer that old familiar fatigue starts to set in, then urinary symptoms, then neuralgias (in some new areas this time), did get some more occipital neuralgia (3 episodes within like 2 months). All 3 were pretty mild and short lived; about 24 hours each. But the 3rd occasion occurred in a new area. I typically get it on the right side, on the back of my head shooting up toward the top of my head. This time it occurred on my left forehead, wrapping around my eye and then my eye actually ached with a nerve pain. that's new. I also get a slew of other symptoms, but the basics are listed above lol
All that to say, I see my neurologist this week. I made the appointment a few months back when the symptoms first started showing up again. She mentioned a while back that if I ever had an "exacerbation" of symptoms that she would consider a spinal MRI. I'm hoping that she does another brain MRI to check for any changes and an spinal MRI too. I would feel much better if she could more thoroughly (hopefully) rule it out and get down to what's going on.
And I'm wondering, in addition to the MRIs (if she orders it), what are some additional tests/lab work y'all would suggest that she might not be looking for? I'm sure she'll repeat all the B12, vitamin D and all that. (i had thorough thyroid panel, so I doubt she redoes that). I'm just trying to be prepared for the appointment. Feels like I get rushed so much while in there that it's hard to even think.
Thank you in advance!
I'm going to try to make this as abbreviated as possible (although I'm sure you're all well aware of how long of a process all this is lol) But I'll try to just hit the hilights.
PCP ordered a brain MRI (with and w/o contrast) and referred me to a neuro because PCP had concerns of MS due to increased frequency and severity of neurological symptoms which he felt mirrored a lot of MS symptoms. (I was only sent to the neuro after the PCP did a lot of labs, then sent me to a Rheumatologist for a thorough work up. And she was incredibly, incredibly thorough. But everything kept coming back normal, but my symptoms kept rolling in.
**Little history--I have random, week long periods, of almost debilitating facial neuralgias. Normally it's occiptial, but have had trigeminal as well. They would occur years apart, first time happening at about 16-17 years old. I've also had very mild wide spread parasthesias, weakness, numbness/tingling, nerve pain just randomly throughout my body throughout adolescence and my 20's. They were very mild and not constant.
I had an "attack" of facial neuralgia last November that sent me in to my PCP after a few days because it was the worst it's ever been. Accord to the Dr., the nerves that appeared to be involved were occipital, trigeminal and glossopharyngeal. All at the same time, it was terrible. Since that point, I had symptoms coming and going for about 3-4 months. I had a tendency to get dizzy pretty easily and off balance very easily and I was always so tired that it physically hurt, but those were the only constant symptoms. The others would come and go over those few months, it just felt like it was always something. Urinary issues, limb weakness, numbness, tingling, pain, etc.**
So that original MRI that was ordered last year showed one small T2 hyperintense white matter lesion. (subcortical maybe?) (sorry if my terminology isn't quite right. That was almost a year ago and I don't have the report in front of me. Due to it only being one lesion, and a small one at that, my neurologist didn't think it was MS related so she didn't want to do any further testing for MS. She, at first, wanted to order a slew of bloodwork to rule out B12 deficiency, thyroid issues, other vitamin deficiencies, etc--but those had just been completed with the rheumatologist and were all normal, so I had those labs sent to her. So, since she didn't believe it was MS, her next step was a Nerve conduction study and EMG (ouch!) to rule out peripheral neuropathy, disc disease, etc---well, there was one muscle that had an "abnormal interference pattern" for the EMG, but she deemed it a normal test.
I've not seen her since then. Just because everything was coming back normal and I didn't want anymore testing done. And more importantly, the majority of the symptoms had alleviated by that point. Most of the tingling, numbness, etc I can handle (except for those facial neuralgias; Thank goodness they occur infrequently bc those are terrible) but the worst part really is the fatigue that comes on with all those symptoms. I get so tired that it physically hurts and takes everything I've got just to do basic tasks. It's like a terrible hangover too, when I don't even drink. and it's so obvious when that fatigue starts to ease up. So since it was all seemingly better I chose to take a "watch and wait" approach. Hoping it was just a fluke.
So I go several months relatively symptoms free. (still getting the symptoms some, but infrequently and much milder). Then toward the end of summer that old familiar fatigue starts to set in, then urinary symptoms, then neuralgias (in some new areas this time), did get some more occipital neuralgia (3 episodes within like 2 months). All 3 were pretty mild and short lived; about 24 hours each. But the 3rd occasion occurred in a new area. I typically get it on the right side, on the back of my head shooting up toward the top of my head. This time it occurred on my left forehead, wrapping around my eye and then my eye actually ached with a nerve pain. that's new. I also get a slew of other symptoms, but the basics are listed above lol
All that to say, I see my neurologist this week. I made the appointment a few months back when the symptoms first started showing up again. She mentioned a while back that if I ever had an "exacerbation" of symptoms that she would consider a spinal MRI. I'm hoping that she does another brain MRI to check for any changes and an spinal MRI too. I would feel much better if she could more thoroughly (hopefully) rule it out and get down to what's going on.
And I'm wondering, in addition to the MRIs (if she orders it), what are some additional tests/lab work y'all would suggest that she might not be looking for? I'm sure she'll repeat all the B12, vitamin D and all that. (i had thorough thyroid panel, so I doubt she redoes that). I'm just trying to be prepared for the appointment. Feels like I get rushed so much while in there that it's hard to even think.
Thank you in advance!