Aa
Symptom question
Curious if any others have had simuIar symptoms. Any advice is greatle appreciated. There is some back ground info that may have some relivance to this. Putting in just in case.
Previous in Sept. thru Oct I had treatment for Kidney stone on right side that in a week turned to having rare kidney cysts (10) on same side. Then developed blood infection, probably from my pic. line in my arm for the IV. On IV atibiodics, Maxipine, Vancomiacin until first of Nov. Then felt good.
I started in Nov. with syncope and tachycardia, to which I brushed of on the previous issue but then to what I call "Brain Fart"(still in it but a bit better) to what I can only describe as severe full body hypersthenia. I have tried all the typical meds with not much luck. I have stayed off my pain meds. Hoping for alternative options to opiates, but losing hope. Meds on now> Betaseron, Neurontin, Clonapin, the just in case Bactrim, Robaxin, Seroquel, Provigil, Requip, I think that's it.
My reg. Docs have been unble to treat and my Neuro up and quit without a back up. Luckily though the syncope has stopped and my heart rate has gone back down.
Anyway after countless weeks of going through this nightmare I have a new neuro. I see him tomarrow. Yeah! I am so glad. It will be so nice to give my couch a break and oh yes, SLEEP!
Thanks,
Kelly
Previous in Sept. thru Oct I had treatment for Kidney stone on right side that in a week turned to having rare kidney cysts (10) on same side. Then developed blood infection, probably from my pic. line in my arm for the IV. On IV atibiodics, Maxipine, Vancomiacin until first of Nov. Then felt good.
I started in Nov. with syncope and tachycardia, to which I brushed of on the previous issue but then to what I call "Brain Fart"(still in it but a bit better) to what I can only describe as severe full body hypersthenia. I have tried all the typical meds with not much luck. I have stayed off my pain meds. Hoping for alternative options to opiates, but losing hope. Meds on now> Betaseron, Neurontin, Clonapin, the just in case Bactrim, Robaxin, Seroquel, Provigil, Requip, I think that's it.
My reg. Docs have been unble to treat and my Neuro up and quit without a back up. Luckily though the syncope has stopped and my heart rate has gone back down.
Anyway after countless weeks of going through this nightmare I have a new neuro. I see him tomarrow. Yeah! I am so glad. It will be so nice to give my couch a break and oh yes, SLEEP!
Thanks,
Kelly
Neuro appointment not much help at this time. Unfortunatly none of records were transfered except for records while in the hospital down here. He ran some labs. He is worried about infection and checked my thyroid and b-12. Every time I have an issue they always want to check my thyroid or hormone levels. Have had both tests at least 15 times in 2 years. Not sure why the keep checking it? Pulled me off betaseron until labs come back. He raised my Neurontin to 600mg x3 a day and then said see you in 3 months.
He also had an x-ray of my heart done. Could be due to prior blood infection and the issues I have had with my heart rate.
Again pain issue not addressed. Evan though I have prior authorization from my pain doc in Birmingham. Heck there is not a pain med I have not been on.
The capsicum patches do help.
Anyone not aware of capsicum from what I understand is an extract from a certain pepper plant. It blocks a certain signal. My husband always tells me the name but I forget it. Gee imagine that. It can burn like heck, but does fine on me as long as I apply it to affected area. Once you take the patch off wash area with glycerin soap. Other wise if water hits it BURNS! The cream version gets every where. They also have it is a liquid roll on that is ok. Just make sure if you touch the area or if someone else touches you to wash it off. Hence why I prefer the patch. The only place I have found it is at CVS.
Maybe I will get lucky and something shows up in my labs and they call me back. At this point I am about ready to switch to a witch doctor. LOL I am so frustrated I am about to cry.
Amyloo> Yes my heart rate has gotten better. Will acked up a bit but only if I get overly active, again another reason why the couch has become my best friend. Heart rate was 120+ bpm and when I stood up I would start to pass out.
The lidocaine IV did work the only problem I had is that I started to intermittent pressure pain were my chest bone is at. Once I stopped it went away. Other than that it was great. I went once a month and it would last 3 to 4 weeks. It is a very questionable treatment and not many places do it. UAB was the only place in Birmingham and only 1 doctor would do it. Just do your homework because there are some serious side effects. I was on it for a year.
Momzilla> Yes the cognitive issue has gotten a bit better. For those of you who read some of my previous post, lets just say not my best.
The biggest problem I have now is the severe over stimulation over entire body, ie hypersthenia. Painful and VERY irritating.
Oh, by the way does anyone else have the issue where your body puts off extreme heat but yet you are not running a temp. You will sweat like heck. My Hubby says he feels like he is sleeping next to a furnace. Have had this issue for years. Yes Hormone test have been done a lot. Come back neg. My prior Neuro called it thermo deregulation. Never been able to find that term on web. Ok this is way long. Thanks everyone for the support. Hope I am able to do the same.
He also had an x-ray of my heart done. Could be due to prior blood infection and the issues I have had with my heart rate.
Again pain issue not addressed. Evan though I have prior authorization from my pain doc in Birmingham. Heck there is not a pain med I have not been on.
The capsicum patches do help.
Anyone not aware of capsicum from what I understand is an extract from a certain pepper plant. It blocks a certain signal. My husband always tells me the name but I forget it. Gee imagine that. It can burn like heck, but does fine on me as long as I apply it to affected area. Once you take the patch off wash area with glycerin soap. Other wise if water hits it BURNS! The cream version gets every where. They also have it is a liquid roll on that is ok. Just make sure if you touch the area or if someone else touches you to wash it off. Hence why I prefer the patch. The only place I have found it is at CVS.
Maybe I will get lucky and something shows up in my labs and they call me back. At this point I am about ready to switch to a witch doctor. LOL I am so frustrated I am about to cry.
Amyloo> Yes my heart rate has gotten better. Will acked up a bit but only if I get overly active, again another reason why the couch has become my best friend. Heart rate was 120+ bpm and when I stood up I would start to pass out.
The lidocaine IV did work the only problem I had is that I started to intermittent pressure pain were my chest bone is at. Once I stopped it went away. Other than that it was great. I went once a month and it would last 3 to 4 weeks. It is a very questionable treatment and not many places do it. UAB was the only place in Birmingham and only 1 doctor would do it. Just do your homework because there are some serious side effects. I was on it for a year.
Momzilla> Yes the cognitive issue has gotten a bit better. For those of you who read some of my previous post, lets just say not my best.
The biggest problem I have now is the severe over stimulation over entire body, ie hypersthenia. Painful and VERY irritating.
Oh, by the way does anyone else have the issue where your body puts off extreme heat but yet you are not running a temp. You will sweat like heck. My Hubby says he feels like he is sleeping next to a furnace. Have had this issue for years. Yes Hormone test have been done a lot. Come back neg. My prior Neuro called it thermo deregulation. Never been able to find that term on web. Ok this is way long. Thanks everyone for the support. Hope I am able to do the same.
Hey~ You sound a LOT better than you did a few weeks ago. Cognitively. Do you find this has improved for some reason for you, or am I reading it wrong?
I certainly hope you're as good as you sound. And I hope you get the answersyou need!
Feel well!
Momzilla*
I certainly hope you're as good as you sound. And I hope you get the answersyou need!
Feel well!
Momzilla*
Oops, forgot to ask you about heart rate. Is your heart beating fast? Is it all the time or just intermitant? Hope I am not pounding you with questions; I have just recently begun having times where my heart is pounding (an hour or so) and then it will subside. Thanks, Amy
Hi, I read this post and would like to know about the lidocaine IV. I have heard it mentioned on a fibromyalgia site; did you not care for it because of side affects? Did it work at all? I am truly getting desparate for pain relief. Thanks, Amy
Bink is my hubby and is a surgery intern. I have some medical back ground plus huddy's input. Most of it comes from my own research.
I am also involved in many areas with the MS society. Because of that I keep up as much as I can on the latest info.
The say knowledge is power. Of course mine is trying to take a vacation.
Yes, there is a chance that Progressive phase is an issue. I try not to read to much in it or else I might freak out. Will find out more today.
Yeah the pain clinic thing has been an issue of will. I tried to be strong but enough is enough.
I hope I can get the right words out of my mouth today.
Thanks for the info last night. You helped back up what we were also thinking.
No I don't feel like your talking down. In fact this has been the first site were I feel like everyone is on there toes and has really educated themselves.
By the way my name is Kelly. I will try to do my profile as soon as I am able to.
Any thanks again to everyone. I need to go get ready. Wish me luck! LOL
I am also involved in many areas with the MS society. Because of that I keep up as much as I can on the latest info.
The say knowledge is power. Of course mine is trying to take a vacation.
Yes, there is a chance that Progressive phase is an issue. I try not to read to much in it or else I might freak out. Will find out more today.
Yeah the pain clinic thing has been an issue of will. I tried to be strong but enough is enough.
I hope I can get the right words out of my mouth today.
Thanks for the info last night. You helped back up what we were also thinking.
No I don't feel like your talking down. In fact this has been the first site were I feel like everyone is on there toes and has really educated themselves.
By the way my name is Kelly. I will try to do my profile as soon as I am able to.
Any thanks again to everyone. I need to go get ready. Wish me luck! LOL
Do you have a name of your own - or something we can call you? Bink is a doctor? So you have a great source of info.
In general we are disapproving of shrinking brains and black holes. Do they think you are entering a progressive phase?
A 5 month wait for a Pain Clinic (Hello!!! It's for pain now, not pain anticipated in the future! Sheeesh!) is ridiculous!
I hope I have not talked down to you. I never know the medical background or level of the people I respond to.
Quix
In general we are disapproving of shrinking brains and black holes. Do they think you are entering a progressive phase?
A 5 month wait for a Pain Clinic (Hello!!! It's for pain now, not pain anticipated in the future! Sheeesh!) is ridiculous!
I hope I have not talked down to you. I never know the medical background or level of the people I respond to.
Quix
Quix,
Yes, I was dx in 99 with RRMS. It took me 9 years to get dx. Since my last MRI and my prior progression my last Neuro made subtle mentions that my MS status is changing. What ever that means. I guess they did not like the brain shrinkage and black holes.
My husband and I both have thought that is a possibility. I made an appointment in Sept. with a pain med clinic and is not until Feb. They really make you wait. I hope they don't make me do the lidocaine IV thing again. I hated it.
When my husband was excepted at a different hospital I had to get all new specialist.
He has been able to pull some strings. The other doctors he works with are great! I got a new neuro quicker because of them. I will keep you posted. I have to get this fixed.
Yes, I was dx in 99 with RRMS. It took me 9 years to get dx. Since my last MRI and my prior progression my last Neuro made subtle mentions that my MS status is changing. What ever that means. I guess they did not like the brain shrinkage and black holes.
My husband and I both have thought that is a possibility. I made an appointment in Sept. with a pain med clinic and is not until Feb. They really make you wait. I hope they don't make me do the lidocaine IV thing again. I hated it.
When my husband was excepted at a different hospital I had to get all new specialist.
He has been able to pull some strings. The other doctors he works with are great! I got a new neuro quicker because of them. I will keep you posted. I have to get this fixed.
You have to tell us about the new neuro. It is an adventure we all want to hear about. Make him listen to you. Have you read our thread on the "Care and Handling of a Neurologist?"
It almost sounds like after the sepsis from the PIC line that you developed a "central pain syndrome." Another possibility is that the infection casued a severe relapse (You are diagnosed with MS, no?) and the hypersthenia is part of that. Any infection will set off the immune system which then triggers a relapse. Even a milder one like a cold or UTI, much more so with something like sepsis.
Sometimes with a central pain syndrome you need a Pain Expert to help. It may take large doses of pain meds to bring it under control and reset the body's pain sensitivity, but I am definitely not an expert in the field of pain Management.
Ahhh, David, you're but an amateur! Don't you realize that you are talking with the woman that holds the World's Indoor Endurance Reclining Championship Title - 3 years running! An minor imprint on your bum....Hah!! My entire backside is shaped like my Lay-Z-Boy recliner. Not only do I spend my days in it when I'm not at the computer, but I sleep in it as well and have for the last two+ years. It's the only way to keep my back out of spasm.
Quix
Sometimes with a central pain syndrome you need a Pain Expert to help. It may take large doses of pain meds to bring it under control and reset the body's pain sensitivity, but I am definitely not an expert in the field of pain Management.
Ahhh, David, you're but an amateur! Don't you realize that you are talking with the woman that holds the World's Indoor Endurance Reclining Championship Title - 3 years running! An minor imprint on your bum....Hah!! My entire backside is shaped like my Lay-Z-Boy recliner. Not only do I spend my days in it when I'm not at the computer, but I sleep in it as well and have for the last two+ years. It's the only way to keep my back out of spasm.
Quix
I hope I am doing this right. Thanks. I hope the new Neuro helps to. I want my life back. The couch now has a permanent imprint of my bum. That is so sad. Of course as you say all I can do is laugh. I have become my own comedy routine. They say it takes more muscle to frown than to smile. You got to save you strength, right. :-)
Hi Kelly, sorry to hear you are having a rough time shall we say at the moment and i hope your new neuro will be able to be of help to you, sorry i cant help you out on this but im sure someone may be of help to ya
hope the current situation improves for you Kelly, take care,
David.
hope the current situation improves for you Kelly, take care,
David.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
