Aa
Don't know where else to look....LONG
Hello :) I am a 39 y/o female with a long history of issues in my hands, starting 10 1/2 years ago after the birth of my first son. Dx'd with carpal tunnel, dealt with it for a few years then had CT release. Seemed better for a bit, but still having problems. Had an MRI of my neck showing a herniation and bone spur so I had C5-C6 discectomy and fusion. Overall symptoms seemed improved but they still flared up from time to time...had to learn to do more things w/my left hand like vacuum, brush dog, etc, can't hold computer mouse...anything with pressure to the base of my palm would leave me with nerve tingles, pains, icy sensations, etc, bouncing around my fingers and wrist and arm.
It all flared up really badly after the birth of my second son, but has died down in the past couple of years, enough so that when I do get a bad spell I'm taken off guard. However, I am not having problems in the other hand, I've assumed it's b/c I abuse it now to give the right hand a rest ;) In the meantime, I've started having some odd sensations in my feet, a toe will go numb, or I'll get a 'jiggly' feeling on my outer ankle, etc. I get some twitches that last several days and are visible to other people, I had one in my abdomen that lasted over a week and OMG it was so frustrating. My vision seems to be deteriorating, but I've always chalked that up to age. I've never needed glasses but now I just can't see some small print and a lot of things look sort of blurry, and my morning visual fog seems to take longer to clear.
The WORST thing, though, is not something I'd have ever thought to be neuro in nature, I get spells of high blood pressure and pounding heart rate, sometimes it will speed up as fast as 150's, and come in swells, I get nauseous with these events, my hands and feet sweat, then I get the shakes and chills. I do not feel impending doom, I've been told it's anxiety, etc etc. First episode was right after son's birth 4 years ago, then nothing for 1 1/2 years, then not again for 2 years, then 6 months, then 1 1/2 months, now it seems as if there's something going on daily.
I have been tested for pheochromocytoma, so far all negative including CT of abdomen. Neck injury/post surgery seems pretty stable although there are a couple of bulging discs. All other bloodwork including thyroid and autoimmune panels are normal. I have had ST changes with some of these 'spells' (caught on a Holter monitor) but a stress test during which I got my HR up to 180 was 'normal' as was my echo.
So I was referred to a neuro and he flat out said he did not think it was anxiety, my reflexes were hyper, he still thinks it's some sore of neuroendocrine tumor but he's doing all the other tests as well...EMG/NCV, EEG, MRI of brain. He's also ordered and octreotide scan. EMG/NCV showed some mild peripheral neuropathy in my arms, and apparently in my legs as well. I did the EEG (20 min, use of strobe for a short period, rest in dark quiet) and the next day I got a call to schedule a 72hr one. WTF? I asked why and was told if I wanted to discuss the results of the EEG, I needed an appt. So I have no idea if he found something and wants to investigate further or if he found NOTHING and wants to look harder. I have not scheduled it yet, I'm going to try and get some answers first. I've not heard back on the MRI.
The past few days haven't been too bad, but I'm noticing that whenever I start moving a lot (like making beds, doing laundry) my heart starts pounding and I get jittery like I've had 10 cups of coffee. Worse spells have been happening in the shower, total fast heartbeat, I start breathing heavier in an attempt to slow it down (I think, I don't really feel short of breath LOL) and it's ironic b/c sometimes I think the shower will help me feel better as a distraction and a way to warm up from the cold shaking that comes on. Arrgghhhh. It's getting exhausting...bp jumping around from a normal of 120/70, up to 170/100, or a recent rarity dropping to 95/49. I'm on meds to keep my HR slow and now meds for BP and I think when the 'surge' isn't happening, the meds have me too low.
It's a long shot, but could my brain be sending bad signals to my adrenals? I have no hope that the scan tomorrow will find anything useful. I'm so tired of telling my boys that 'Mommy doesn't feel well'.
It all flared up really badly after the birth of my second son, but has died down in the past couple of years, enough so that when I do get a bad spell I'm taken off guard. However, I am not having problems in the other hand, I've assumed it's b/c I abuse it now to give the right hand a rest ;) In the meantime, I've started having some odd sensations in my feet, a toe will go numb, or I'll get a 'jiggly' feeling on my outer ankle, etc. I get some twitches that last several days and are visible to other people, I had one in my abdomen that lasted over a week and OMG it was so frustrating. My vision seems to be deteriorating, but I've always chalked that up to age. I've never needed glasses but now I just can't see some small print and a lot of things look sort of blurry, and my morning visual fog seems to take longer to clear.
The WORST thing, though, is not something I'd have ever thought to be neuro in nature, I get spells of high blood pressure and pounding heart rate, sometimes it will speed up as fast as 150's, and come in swells, I get nauseous with these events, my hands and feet sweat, then I get the shakes and chills. I do not feel impending doom, I've been told it's anxiety, etc etc. First episode was right after son's birth 4 years ago, then nothing for 1 1/2 years, then not again for 2 years, then 6 months, then 1 1/2 months, now it seems as if there's something going on daily.
I have been tested for pheochromocytoma, so far all negative including CT of abdomen. Neck injury/post surgery seems pretty stable although there are a couple of bulging discs. All other bloodwork including thyroid and autoimmune panels are normal. I have had ST changes with some of these 'spells' (caught on a Holter monitor) but a stress test during which I got my HR up to 180 was 'normal' as was my echo.
So I was referred to a neuro and he flat out said he did not think it was anxiety, my reflexes were hyper, he still thinks it's some sore of neuroendocrine tumor but he's doing all the other tests as well...EMG/NCV, EEG, MRI of brain. He's also ordered and octreotide scan. EMG/NCV showed some mild peripheral neuropathy in my arms, and apparently in my legs as well. I did the EEG (20 min, use of strobe for a short period, rest in dark quiet) and the next day I got a call to schedule a 72hr one. WTF? I asked why and was told if I wanted to discuss the results of the EEG, I needed an appt. So I have no idea if he found something and wants to investigate further or if he found NOTHING and wants to look harder. I have not scheduled it yet, I'm going to try and get some answers first. I've not heard back on the MRI.
The past few days haven't been too bad, but I'm noticing that whenever I start moving a lot (like making beds, doing laundry) my heart starts pounding and I get jittery like I've had 10 cups of coffee. Worse spells have been happening in the shower, total fast heartbeat, I start breathing heavier in an attempt to slow it down (I think, I don't really feel short of breath LOL) and it's ironic b/c sometimes I think the shower will help me feel better as a distraction and a way to warm up from the cold shaking that comes on. Arrgghhhh. It's getting exhausting...bp jumping around from a normal of 120/70, up to 170/100, or a recent rarity dropping to 95/49. I'm on meds to keep my HR slow and now meds for BP and I think when the 'surge' isn't happening, the meds have me too low.
It's a long shot, but could my brain be sending bad signals to my adrenals? I have no hope that the scan tomorrow will find anything useful. I'm so tired of telling my boys that 'Mommy doesn't feel well'.
Hello :) I wore an event monitor back when the second episode happened, a couple of years ago. It showed a lot of nothing LOL.
I'm meeting w/the endo today, to hopefully get the results of the octreoscan, and I need to make a f/u with the neuro once I get the answers from that. I have had CT of the C-spine b/c of the neck issue, but not with contrast. Been feeling ok for the most part the past several days, although when I get active ie. vacuuming, laundry, I start to feel jittery like I have too much adrenaline or I've hooked myself up to a caffeine drip. I don't drink much caffeine, so I don't know if it's just another part of my alien or what :)
I'm meeting w/the endo today, to hopefully get the results of the octreoscan, and I need to make a f/u with the neuro once I get the answers from that. I have had CT of the C-spine b/c of the neck issue, but not with contrast. Been feeling ok for the most part the past several days, although when I get active ie. vacuuming, laundry, I start to feel jittery like I have too much adrenaline or I've hooked myself up to a caffeine drip. I don't drink much caffeine, so I don't know if it's just another part of my alien or what :)
Hi, and Welcome!
You have quite an interesting story, here. I'm curious about your MRI. With hyperreflexia, I probably would have ordered a MRI of your T-Spine and C-Spine as well. Just sayin'.
Even with a couple of cardiac workups, have you ever worn an event monitor? They're like a holter monitor that you wear for 15-30 days. Instead of recording your heart rhythm constantly, it will record your rhythm when you have an event as you describe, and you can send your recording by phone to be printed and sent to your cardiologist. Autonomic dysfunction can be pretty scary. I get it too.
That's cool that you did so well with your stress echo. I've been an echocardiographer for 31 years ;-)
Keep us posted!
You have quite an interesting story, here. I'm curious about your MRI. With hyperreflexia, I probably would have ordered a MRI of your T-Spine and C-Spine as well. Just sayin'.
Even with a couple of cardiac workups, have you ever worn an event monitor? They're like a holter monitor that you wear for 15-30 days. Instead of recording your heart rhythm constantly, it will record your rhythm when you have an event as you describe, and you can send your recording by phone to be printed and sent to your cardiologist. Autonomic dysfunction can be pretty scary. I get it too.
That's cool that you did so well with your stress echo. I've been an echocardiographer for 31 years ;-)
Keep us posted!
Just thought I'd update here :) I had the octreotide scan and there WAS an area of focal uptake that MIGHT indicate a carcinoid or neuroendocrine tumor. But they weren't sure, maybe I'm just full of radioactive sh*t hahaha. It was in the area of the cecum/right colon. They even brought me in the next day to see if it moved, which it did, but only slightly (IMO) so now I'm waiting on the official word, I have an endo appt on Monday.
I got an all-clear on my brain MRI but I still need to f/u with the neuro to see what the deal was with the EEG. I've just been too busy on my other appts and then my 10 yr old threw me a curve ball and now we're taking him to a ped. cardiologist for slow/irregular heart rate issues.
I think I'm ready for the white room with soft padded walls and a snug jacket mwahahahahaha.
I got an all-clear on my brain MRI but I still need to f/u with the neuro to see what the deal was with the EEG. I've just been too busy on my other appts and then my 10 yr old threw me a curve ball and now we're taking him to a ped. cardiologist for slow/irregular heart rate issues.
I think I'm ready for the white room with soft padded walls and a snug jacket mwahahahahaha.
Thanks for reading and replying. I do not know that the neuro is thinking MS, I only came here b/c a friend who had been dx'd with MS (who was actually my PT for a while) said she was surprised I didn't have MS in my medical history combined with all the other weirdness. She is the one who urged me to yet again seek new opinions and ultimately got the ball rolling. She was seeing the same neuro as well, and I did really like him although I thought he was a bit overly aggressive with the EMG needle LOL
I'm pretty sure I don't have WPW, I've had multiple EKGs during tachy events and I've had more than my share of cardiac workups. I keep getting told 'it's not your heart'.
I am not doing the EEG yet, the octreoscan takes 2 days to complete, then the endo wants me to do a 3 hr gtt (I had gestational diabetes so she's being extra thorough on that front) to make sure I don't have some reactional hypoglycemia or something. But basically she's just waiting to get the octreoscan results. So this week is pretty booked and honestly I have fairly thick hair that tends to frizz and I'm not looking forward to 3 days of goop and glue and itching and arrrgghhh. I can't stand to not wash my hair LOL
Of note, I am noticing a pattern of more exacerbated HR issues when I'm in the shower, also once when I took a hot bath. Don't know if it's the exertion or the hot water but something's making it all worse. And then I get all twitchy with the adrenalin release.
Btw, I am taking Cardizem ER 180mg for HR and just added Lisinopril 10mg for bp. I'm still going over 100 HR with any kind of exertion, although finally my bp seems to be staying more normal during the 'episodes', maybe related to the recent addition of the lisinopril. I think my body is just trying to make me crazy.
I'm pretty sure I don't have WPW, I've had multiple EKGs during tachy events and I've had more than my share of cardiac workups. I keep getting told 'it's not your heart'.
I am not doing the EEG yet, the octreoscan takes 2 days to complete, then the endo wants me to do a 3 hr gtt (I had gestational diabetes so she's being extra thorough on that front) to make sure I don't have some reactional hypoglycemia or something. But basically she's just waiting to get the octreoscan results. So this week is pretty booked and honestly I have fairly thick hair that tends to frizz and I'm not looking forward to 3 days of goop and glue and itching and arrrgghhh. I can't stand to not wash my hair LOL
Of note, I am noticing a pattern of more exacerbated HR issues when I'm in the shower, also once when I took a hot bath. Don't know if it's the exertion or the hot water but something's making it all worse. And then I get all twitchy with the adrenalin release.
Btw, I am taking Cardizem ER 180mg for HR and just added Lisinopril 10mg for bp. I'm still going over 100 HR with any kind of exertion, although finally my bp seems to be staying more normal during the 'episodes', maybe related to the recent addition of the lisinopril. I think my body is just trying to make me crazy.
A more common cause for the heart rate issue might be something like Wolff-Parkinson-White syndrome. This is notoriously hard to diagnose. The "J Wave" can really only be seen during a tachycardia event and usually only on the chest leads.
There are some neurological conditions that lead to "autonomic dysfunction." Rather than the brain speeding the heart up, there can be issues where the brain fails to control rapid heart rate by suppressing the action of the vagus nerve.
Bob
There are some neurological conditions that lead to "autonomic dysfunction." Rather than the brain speeding the heart up, there can be issues where the brain fails to control rapid heart rate by suppressing the action of the vagus nerve.
Bob
Good morning, alienimplant-
First off, let me say welcome to the forum yet I am sorry that you have found your way here. I love your user name and can very well relate to it completely.
I am so sorry that you are experiencing the things you are. I can truly understand the fears and frustrations with not having answers to the things that your body are doing. I am sorry that I cannot share any advice or understanding with some of the symptoms that you are having.
I will say that it sounds like you have found a pretty good neuro and that means you have made it past your first hurdle with flying colors. If you spend any time here you will find that this is not something that happens with a lot of people, myself included. Your neuro seems to be pretty thorough in trying to help you figure out what is going on. If you haven't yet scheduled that 72 hour EEG, I would push you to go ahead and schedule it now. Whether your neuro sees something or wants to look further, he feels the test is necessary and you very well may get some answers with it. I know it is so hard to wait for answers and with neuro issues it seems that we have to always wait longer. But, maybe you can schedule the test and them make a neuro appointment for a couple of days later and get some answers for both EEG's. Heck, you might get lucky and he will have the results for your MRI as well.
Are you suspecting MS? Has your doctor mentioned it as a possibility for your symptoms? It is purely my own opinion, but your symptoms do not sound like MS to me. Maybe someone else will respond here with a different opinion though.
Again, welcome to our wonderful little corner on the web. You have found a group of incredibly compassionate and knowledgeable folks here. I am sure that others will be reading and responding to you soon. I just wanted to step up and tell you you are not alone. No matter what the outcome of your tests reveal, we are here for you.
Hugs to you,
Addi
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