Wow. This is a bit of a coincidence. I was just looking around for a spot to post a question, as I'm not completely sure of how to navigate yet. So, as I'm fumbling around I saw your post, and I was like, OH OK. Anyway, long story short, I have the same thing. I've had it for a while(since I was in the hosp w/pneum.). I guess I was hopeful it would go away, but it hasn't shown any signs of dissipating yet. I guess my fear is that it's neuro, and I don' t want to tell the doc....tests, etc.... I am truly so very sick of being stuck, poked, and prodded, and I am sure you and sooooo many know that feeling. I guess I am also just going through an emotional phase(in a flare)and every time I think of the doc telling me something else is wrong I think I will flip. I had an EEG abt 2 yrs. ago, and had some lesions on my brain, but nothing else was done so I assumed it wasn't serious.... I hear so many here talk of their symptoms with ease and confidence and I think to myself, "HOW" ? How do they do that? Ok, I've taken up enough space here and I do wish u the best of luck, I want to see how you progress, so keep us posted ok? Thank you for sharing....it just helps sometimes.
I see that although you have had a diagnosis for a couple of years you are fairly new to this site...Welcome.
I think we can all relate to the feeling of being overwhelmed when we are told that there may be something new...really how much is someone supposed to take? Our ability on most days to talk about our symptoms and discuss what it working for us and each other is in our strength as a group that understands that knowledge is power. Just by posting this you let Ms. P and so many others of us know that this may be more prevelant than we thought. I see my Rhuemy Monday and am going to ask her specifically about it as well as her husband, who is my Nuero. If there is something that let's me sleep without beating up my husband, it might be worth looking into.
This disease and so many others that seem to tag along with it is so very different from person to person, that although something may not apply to you, sometimes just letting someone that is having a bad day know that you are there can be very healing. I believe many would agree that this site is about accepting each of us exactly how we are, and we will accept you exactly how you are.
You will hear this often, but going to say it anyway - Listen to your body. If this particular issue is becoming problematic, please don't let it go.
As to starting a thread (asking a question, posting info) just go to the top of any thread and hit the ADD+ key and you are ready to rock 'n roll :).
So glad you are with us!
Hugs,
DeAnne
Angel312 said:
Wow. This is a bit of a coincidence. I was just looking around for a spot to post a question, as I'm not completely sure of how to navigate yet. So, as I'm fumbling around I saw your post, and I was like, OH OK. Anyway, long story short, I have the same thing. I've had it for a while(since I was in the hosp w/pneum.). I guess I was hopeful it would go away, but it hasn't shown any signs of dissipating yet. I guess my fear is that it's neuro, and I don' t want to tell the doc....tests, etc.... I am truly so very sick of being stuck, poked, and prodded, and I am sure you and sooooo many know that feeling. I guess I am also just going through an emotional phase(in a flare)and every time I think of the doc telling me something else is wrong I think I will flip. I had an EEG abt 2 yrs. ago, and had some lesions on my brain, but nothing else was done so I assumed it wasn't serious.... I hear so many here talk of their symptoms with ease and confidence and I think to myself, "HOW" ? How do they do that? Ok, I've taken up enough space here and I do wish u the best of luck, I want to see how you progress, so keep us posted ok? Thank you for sharing....it just helps sometimes.
Angel, it also helped me to join a local Lupus support group at my area Hospital. It really helped me to be able to fellowship directly with people like me with the same symtoms and they have guest speakers who gives us a wealth of info also.
You may try calling your local hospital and asking about joining an Lupus or a Auto Immune support group.
@ Jujubeee, I think that I will request an MRI on my brain just to make sure that I don't have any lesions on my brain. sometimes I get foggy minded and a bit dizzy, it would'nt hurt to check it out to be on the safe side, I need to put this expensive Insurance to good use anyway, lol.
I quite agree also get them to check your brain as lesions can be a serious issue sometimes :)
Ms. P said:
@ Jujubeee, I think that I will request an MRI on my brain just to make sure that I don't have any lesions on my brain. sometimes I get foggy minded and a bit dizzy, it would'nt hurt to check it out to be on the safe side, I need to put this expensive Insurance to good use anyway, lol.
Angel/Gail as been with the group for ages but her hands only permit so much typing and i really feel for her and she's one adorabe person to get to know.
She as spine trouble etc loads going on where lifting pillows takes forever and she as to permantley lie and when she is tested on anything she goes through such alot of pain....i just thought i'd let members know Gail's position and if she wants to say more then Gail will do so but she's s limited and such a great loving person she can only get on here when she's able to and that's for such a short time....my heart goes out to her and she knows it and what Lupus as pushed her way is terrible besides having OCPD like myself takes alot out of Gail but she is one member worth getting to know DeAnne.
Angel/Gail as been with the group for ages but her hands only permit so much typing and i really feel for her and she's one adorabe person to get to know.
She as spine trouble etc loads going on where lifting pillows takes forever and she as to permantley lie and when she is tested on anything she goes through such alot of pain....i just thought i'd let members know Gail's position and if she wants to say more then Gail will do so but she's s limited and such a great loving person she can only get on here when she's able to and that's for such a short time....my heart goes out to her and she knows it and what Lupus as pushed her way is terrible besides having OCPD like myself takes alot out of Gail but she is one member worth getting to know DeAnne.
If you get intouch with Gail you'll have to wait till she comes on like myself but her messages are always so loving and thoughtful :) xxx
whathappensinvegas said:
Terri
I look forward to it.
Thanks sweetie,
DeAnne
Tez_20 said:
Hello DeAnne,
Angel/Gail as been with the group for ages but her hands only permit so much typing and i really feel for her and she's one adorabe person to get to know.
She as spine trouble etc loads going on where lifting pillows takes forever and she as to permantley lie and when she is tested on anything she goes through such alot of pain....i just thought i'd let members know Gail's position and if she wants to say more then Gail will do so but she's s limited and such a great loving person she can only get on here when she's able to and that's for such a short time....my heart goes out to her and she knows it and what Lupus as pushed her way is terrible besides having OCPD like myself takes alot out of Gail but she is one member worth getting to know DeAnne.
Be VERY careful with Neurontin. I was on it many years ago because of a back injury and stopped taking it suddenly (I know, stupid, yeah) and had a grand mal seizure. If you do stop taking it, do it gradually.
Hugs,
DeAnne
TJ said:
I have the same thing. My Neuro started me on Neurontin last year. It has helped with the pain some (mostly at night) but I still have tremors. There are times when I do not notice them at all and then there are times when I can not hold a glass of water. Unfortunately, they have not told me what is causing it other than "nerve damage".
I totally agree with DeAnne...although i've never been on the drug, NEVER pull your body straight off a drug, you do it slowly as you can course more harm to your body besides consequencies and believe me i suffer from Grand mal seizures and they're not pleasant at the best of times.
I used to be on Tegretol and they said it was no good for my seizures as it's a quick release med so they moved me onto Tegretol release...t's a drug which releases slowly into the blood to control my seizures better they are great drugs and so is Keppra besides the other's i take.lol
It's not the same thing with how we suffer and it slow releasing it's working on our nervous system more besides he brain and controlling seizures...where as with normal Tegretol once swallowed and in our system it does a fast release and is'nt so controlling i used to have over 18 seizures daily on them and they needed to control them they swapped them and my seizures are better now.
Well at least he checks your liver as that's very important...mines working over drive to keep up with what i take...then the tumour on top...we're ticking time bombs mate. lol
I say Julie he sounds stubborn mate and if things get worse he should up them anyway to see if they help my neuro does...i'm on the highest amount for tegretol besides keppra except for one tablet on both and she tried me..christ my stomach did ache and feel sick/nausea i pulled myself off the extra tablets, my system finds it hard now taking extra.
NAUGHT NAUGHY Julie but i dow blame you mate not with what you go through daily and he sounds an idiot anyway...i see my neuro next week funny enough and she also suffers from an autoimmune disease but never told me which one but knows a fare deal about them when i've been speaking.
Takecare mate and enjoy your day best you can...hugs Terri :) xxxx
My neurologist told me that the jerking that I have when I lie still is called mono clonic movements. He put me on clonapram 0.5mg two pills before bed. It works.
Well lately the tremors during the day has gotten worse. It is crazy how bad I shake! So he added another clonapram in the morning. Hasn’t worked . Tires me out. Hard to write or paint details on my art pieces. Help …does anyone know what this is from? My doctor hasn’t done anything to see what’s causing it.
Nuerontin did less than nothing for me, but the Nuerosurgeon that did the first surgery on my back, cutting through skin, muscle, spinal sheath and then cutting the ruptured disc, put me on Tylenol 3 if you can believe it. When I told him the Nerontin didn't work, he said I was just looking for drugs. Really! Heaven forbid the procedure didn't work! And when the discs rupture again I ended up in the hospital with my BP through the roof from pain. I was in a brace and had to fly my aunt in to tend to me as I had no one. After she left ( I was still in the brace) I drove myself to the hospital. He just threw up his hand and sent me to pain management. It saved my life. This is why I believe that uncontrolled pain should be seen by an expert in that field. The Neurosurgeon was supposed to be and expert in his field, but really?...Tylenol 3. Kids take that for a tooth filling.
It sounds like you have something that I have been fighting and should be able to get answers after the second half of the nerve test. II am seeing the Nuero because if there is one thing I have learned it's that you see the doctor that is right for the problem.
I am happy that you have foud something that works for you...that is rare and even more rare is getting a firm diagnosis. Good for you. Keep on fighting the good fight.
xxx.
DeAnne
jujubeee said:
I used to be on neurontin (also tried lyrica, elavil and I'm still on cymbalta) for nerve pain. I was up to a million mg a day (well not a million...about 8000mg or something ridiculous) . It stopped working for me many years ago.
I am now on tegetrol for trigeminal neuralgia and multiple cranial neuropathies. It is a much better medication. It is an anti-seizure med.
Most drugs require a taper down. It's different for everyone..prednisone requires one because it replaces your natural ability to produce a hormone. Doctors should know better.
HUGS...keep us updated on your test results :) Love Julie
Is it just be or do Nuerosurgeons this they are Gods? They are absolutely the worst.
jujubeee said:
Oh yeah Terri, you mean Trileptol! I wanted it but my neuro said its basically the same thing so I should stay on the tegretol. lol Of course he knows BEST since he is the King of the Neurologists, hahaha... He tried to take me off it when he did labs to check my liver, which turned out fine, but my platelets run very high (instead of low) I had to tell him it was the lupus and he called my rheumie who told him to go ahead and let me have it. When he wouldn't increase it last month during a terrible tn attack I got a bit annoyed and called his emergency number after hours until he got tired of me calling and said OH go ahead, for goodness sakes.
I can bet you if HE had a tn attack from all 3 branches that pull his neck into an utterly nightmarish position and HE felt like someone was pulling his teeth out through HIS face..he'd feel differently, lol.
ps I'm not afraid to ask for what I need obviously. I'm already on pain pills. The tegretol helps though..and during the worst of attacks I'd do just about anything anyway..if you think I really waited for HIS devine permission to take the extra tegretol..well lets just say I didn't and wouldn't. haha
Terri (double R, one I, one wonderful lady) I love you!!! Julie
Your doctor's as'nt done nothing knowing that it's to do with the CNS which causes many issues with our bodies if we have diseases connected or not but i do know it can be irritating besides embarrassing all according to who's around you.
This link below explains about Tremors and the med your neuro as you on is also mentioned for helping them besides others.
My neurologist told me that the jerking that I have when I lie still is called mono clonic movements. He put me on clonapram 0.5mg two pills before bed. It works. Well lately the tremors during the day has gotten worse. It is crazy how bad I shake! So he added another clonapram in the morning. Hasn't worked . Tires me out. Hard to write or paint details on my art pieces. Help ...does anyone know what this is from? My doctor hasn't done anything to see what's causing it.
I went and saw my neuro yesterday and discussed how my hearing used to blank off just watching the tele and those was seizures at the time but now it's turned to having a right noise go through my head and i was still alert otherwise but ste was'nt sure if it was a Temporal lobe seizures as it took a while for me to hear right and respond back....she told me that my brain is having shut down episodes now.
With everything i've gone through concerning my brain i'm surprised the marbles have'nt gone altogether but aparentley it's the neurons in the brain causing it.
My EEG's i've had have shown me having epilepsy but mainly the ones where you sleep having the EEG...now i'd have thought your right side would have been showing it being more active because when your brains slowing that's when cells are'nt so active.
I am pleased you have no brain lesions like myself and your MRI is clear like mine but i've been told several times by the neuro and in the TIA unit they're surprised there's no fractures to the skull because my head carries 7 scars besides a bald patch at the back and on the right side at the front there's a scare with a lump....julie it's a wonder i've got any teeth with how i've knocked them up and had them done.
Well putting you on meds for seizures you must have it because i know otherwise no doctor can afford to put a patient on epilepsy drugs if they have'nt got them...as the drugs alone can trigger seizures.
Love Terri :)
jujubeee said:
My neuro said my abnormal EEG showing slowing on the left side of my brain is causing seizures. Even this isn't 100% proof that lupus is damaging my central nervous system. I have no brain lesions, and a clear MRI. I am prone to extreme nerve problems, I have multisystem nerve entrapment syndrome.
He thinks I am having seizures and I am on anti-convulsants.