Aa
Overdosing on Meds...
Most of you know the situation that I have been in for the last few months in trying to discern what exactly is the cause of all the neuro-pathic pain I have been having as well as other symptoms that have been plagueing me. I went to see a new neuro and she came to the conclusion that my MS is in remission (has been since 1993 when diagnosed) and it was advised that my med dosage be lowered. I was on 1600mg of Neurotin/day and 1200mg of Tegretol/day with 1 extra strength Tylenol three times/day and 1 Advil 3 times/day. The advisable level of the anti-seizure meds should be between 25 and 50...my level which was obtained through a blood test was 51.
I have been on 1200mg/day Neurontin and 900mg/day Tegretol for one week. My speech has improved in that I am no longer speaking as though I am half asleep and the stuttering and slurring has improved. My balance has improved...I am not falling over in the shower and when I am walking across the living room floor! I have noticed that my vision has improved greatly...
However, I am having more pain in my head (paratrigeminal neuralgia) and more numbness in the opposite side of my face BUT, the pain in my legs has not increased, I have had no double vision (knock on wood) and the neuropathic pain in general has not changed.
SO WHAT DOES THIS ALL MEAN??? I believe that my last "Neurologist" was overdosing me on all of these meds! He should have been sending me for blood tests to regulate the level of these drugs on a regular basis and he did not send me for blood tests once!
I am feeling a whole lot better and I hope that this will continue and although we still don't know what is causing the neuropathic pain (if not MS) I am starting to feel like a new person! I have to repeat the blood tests next week to see what the drug level is but I have a feeling it is going to be good news.
My last neuro was really difficult to talk to and every time I would call and speak to his nurses they would say "well, there is lot's of room to increase your Tegretol for the pain so if it gets bad, just increase it by 100mg as you need it." Of course I would not listen to them, I didn't feel that it was right to increase the dosage without speaking to the dr. and I would just suffer through the pain. However, when I would see him and try to tell him that the pain was severe he would just increase my dosage and of course I would listen to him! He did try to put me on Lyrica but he started me at 75mg/3 times a day and what a reaction I had! Double blindness, jerking and twitching, hearing problems...when I told my new neuro about it she couldn't believe that he started me on such a heavy dose and she thinks that should I need it, Lyrica may be something we can use in the future but starting on a very small dose and working up.
Just goes to show you what a difference there is in Neurologists (not that you didn't know that) but to think that he was essentially MAKING ME SICK and rather than looking into the real reason for my speech problems and my balance problems, he just kept adding to the problem by increasing my dosages. He also kept saying to me under his breath when I asked what was causing these problems "it's an underlying symptom of your MS."
I just wanted to share this as I think it is something we should all keep in the back of our heads when we are given increases on our meds and new things start to happen that don't make sense. I think back and wonder about some of the other meds that I have taken including Topamax and Prednisone...were the doses too large and is that why I had such violent reactions to them? Makes ya kinda think doesn't it???
Rena705
I have been on 1200mg/day Neurontin and 900mg/day Tegretol for one week. My speech has improved in that I am no longer speaking as though I am half asleep and the stuttering and slurring has improved. My balance has improved...I am not falling over in the shower and when I am walking across the living room floor! I have noticed that my vision has improved greatly...
However, I am having more pain in my head (paratrigeminal neuralgia) and more numbness in the opposite side of my face BUT, the pain in my legs has not increased, I have had no double vision (knock on wood) and the neuropathic pain in general has not changed.
SO WHAT DOES THIS ALL MEAN??? I believe that my last "Neurologist" was overdosing me on all of these meds! He should have been sending me for blood tests to regulate the level of these drugs on a regular basis and he did not send me for blood tests once!
I am feeling a whole lot better and I hope that this will continue and although we still don't know what is causing the neuropathic pain (if not MS) I am starting to feel like a new person! I have to repeat the blood tests next week to see what the drug level is but I have a feeling it is going to be good news.
My last neuro was really difficult to talk to and every time I would call and speak to his nurses they would say "well, there is lot's of room to increase your Tegretol for the pain so if it gets bad, just increase it by 100mg as you need it." Of course I would not listen to them, I didn't feel that it was right to increase the dosage without speaking to the dr. and I would just suffer through the pain. However, when I would see him and try to tell him that the pain was severe he would just increase my dosage and of course I would listen to him! He did try to put me on Lyrica but he started me at 75mg/3 times a day and what a reaction I had! Double blindness, jerking and twitching, hearing problems...when I told my new neuro about it she couldn't believe that he started me on such a heavy dose and she thinks that should I need it, Lyrica may be something we can use in the future but starting on a very small dose and working up.
Just goes to show you what a difference there is in Neurologists (not that you didn't know that) but to think that he was essentially MAKING ME SICK and rather than looking into the real reason for my speech problems and my balance problems, he just kept adding to the problem by increasing my dosages. He also kept saying to me under his breath when I asked what was causing these problems "it's an underlying symptom of your MS."
I just wanted to share this as I think it is something we should all keep in the back of our heads when we are given increases on our meds and new things start to happen that don't make sense. I think back and wonder about some of the other meds that I have taken including Topamax and Prednisone...were the doses too large and is that why I had such violent reactions to them? Makes ya kinda think doesn't it???
Rena705
Bumping this up for more than one reason.
The research says, as do many in the medical community that treating CIS with DMT's has proven success. Now, I might have stated that wrong, but the Dr you are seeing, is dismissing MS, basically, and only treating your symptoms and not the underlying issue. A mix of both, is so needed.
As Q states, she is not even consideing, or suggesting the neuropathic pain is a part of the underlying issue, which could very well be your MS.
Oh boy, this is going to be some appt., and I hope you get some answers.
And, please do tell how you plan on going about it, without disrespecting the Dr, as I am going to have to bring up the potty (lack of) issue and spasms back up to my Dr., along with info that it may be related to the MS when he says it's not a typical symptom.
I'm fresh out of water on this type of stuff, and think you could provide some assistance in this area with what you are going througs.
be well,
SL
The research says, as do many in the medical community that treating CIS with DMT's has proven success. Now, I might have stated that wrong, but the Dr you are seeing, is dismissing MS, basically, and only treating your symptoms and not the underlying issue. A mix of both, is so needed.
As Q states, she is not even consideing, or suggesting the neuropathic pain is a part of the underlying issue, which could very well be your MS.
Oh boy, this is going to be some appt., and I hope you get some answers.
And, please do tell how you plan on going about it, without disrespecting the Dr, as I am going to have to bring up the potty (lack of) issue and spasms back up to my Dr., along with info that it may be related to the MS when he says it's not a typical symptom.
I'm fresh out of water on this type of stuff, and think you could provide some assistance in this area with what you are going througs.
be well,
SL
I can only share what my neuro made of my new symptoms and no new MRI lesions. He believed me and not the MRI. He specficially said, "I don't see the lesion that's causing your Trigeminal neuralgia, it's just too small. but, that's a good thing. You don't want big lesions in your brain stem." So despite the stable MRI he is treating me for an ongoing relapse. Your neuro is a "lesion counter" and cannot see beyond that to the truth in the patient. Why in the world, when faced with a known problem that causes your symptoms, would she ignore it and try to find a second disorder? It is sloppy thinking.
Do you remember the post about the Consensus Statement or was it before you started posting here?
Quix
Do you remember the post about the Consensus Statement or was it before you started posting here?
Quix
She is not saying that MS doesn't cause neuropathic pain...she is saying that I am not in an MS relapse, it is not the MS that is causing the neuropathic pain. However, she does not know what is causing the pain and when I asked my g.p. if there was any indication as to what else may be causing this pain in the letter she received from my neuro, she shrugged her shoulders and said that "we will see what happens in the next month after we decrease your meds and take it from there."
I have an appointment on Feb. 6 with my g.p. so I am going to put her to the wall and find out what exactly she and the neuro are going to do next...anything or nothing. Time will tell I guess.
I have an appointment on Feb. 6 with my g.p. so I am going to put her to the wall and find out what exactly she and the neuro are going to do next...anything or nothing. Time will tell I guess.
You bring up a really important point that we forget all too often. New symptoms can be side effects of drugs. When you were talking about your slurred speech, I didn't think once about a possible med effect. Yet, early in my vertigo/seizure workup they had me toxic on phenobarbital and Dilantin and I was ataxic with slurred speech, and not thinking clearly. (I told my boss that "I'm not as think as you drunk I am." He looked concerned.)
A level of 51 would not necessarily be toxic for everyone. Some people require higher-than-recommended levels to control their whatevers. But, it should have been periodically checked and when it was at the upper limit, he should have asked SPECIFICALLY about side effects. Bigtime loser, needs to hear about his "oversight."
But, I am still very concerned about your neuro withholding DMDs based on old recommendations from the Canadian MS Consensus group. I know we already talked about this.
But, Why is she maintaining that MS does not cause neuropathic pain?????? It is one of the main sources of pain in MS. That's what Trigeminal Neuralgia and, I gather PTN, is, for heavens sake! Neuropathic pain is a major deal in MS! Your lady neuro sounds like a closed-minded and not-to-well-informed dufus. A quote from my bible of MS, "Several distinct pain syndromes occur in MS patients. Some experience severe, lancinating (deep, stabbing) neuralgic pains in the limbs or elsewhere; others complain of more persistent, intolerable dysesthesias (inappropriate bad sensations) frequently with a burning quality." I have two cites for those quotes.
I don't think you are in good hands. Untreated MS for 4+ years is not a good thing!
Quix
A level of 51 would not necessarily be toxic for everyone. Some people require higher-than-recommended levels to control their whatevers. But, it should have been periodically checked and when it was at the upper limit, he should have asked SPECIFICALLY about side effects. Bigtime loser, needs to hear about his "oversight."
But, I am still very concerned about your neuro withholding DMDs based on old recommendations from the Canadian MS Consensus group. I know we already talked about this.
But, Why is she maintaining that MS does not cause neuropathic pain?????? It is one of the main sources of pain in MS. That's what Trigeminal Neuralgia and, I gather PTN, is, for heavens sake! Neuropathic pain is a major deal in MS! Your lady neuro sounds like a closed-minded and not-to-well-informed dufus. A quote from my bible of MS, "Several distinct pain syndromes occur in MS patients. Some experience severe, lancinating (deep, stabbing) neuralgic pains in the limbs or elsewhere; others complain of more persistent, intolerable dysesthesias (inappropriate bad sensations) frequently with a burning quality." I have two cites for those quotes.
I don't think you are in good hands. Untreated MS for 4+ years is not a good thing!
Quix
MAYBE WE SHOULD TAKE ALL THESE DEFECTIVE NEURO'S AND CATAPOLT A BALL INTO THE WOODS AND MAKE THEM FETCH IT,I BET NOT A DARN ONE WOULD HAVE THE SENSE YOUR DOG DOES TO FIND THERE WAY OUT.
YOUR POOR PUPPY!!!!!!!!!! HECK IT WOULD JUST BE A SNACK TO THE BEARS.
MY SON IS ALWAYS TELLING MY NEWFOUNDLANDS( WHICH I SEEM TO GET THE STUPID ONES) BELLE AND ABBY THAT HE IS GONNA TAKE THEM HUNTING AND HE'S COMING HOME ALONE.
HE JUST GETS HIS SHOT GUN OUT AND THEY RUN FOR COVER.YA EVER SEE A 140 POUND DOG TRY TO FIT UNDER A COUCH.I TOLD YA THEY AIN'T TO BRIGHT.
STICK TO YOUR GUNS(NO PUN INTENDED) WHEN YOU SEE YOU GP.
I'M NOT CLEAR ON WHY YOUR NEURO DOESN'T HAVE YOU ON A MS DRUG,DARN IT CAN PROGRESS REALLY QUICK.
TIME TO TAKE THEM TO THE WOODS.
THIS NEEDS TO ADDRESSED WITH YOUR GP ALSO!!!!
T-LYNN
YOUR POOR PUPPY!!!!!!!!!! HECK IT WOULD JUST BE A SNACK TO THE BEARS.
MY SON IS ALWAYS TELLING MY NEWFOUNDLANDS( WHICH I SEEM TO GET THE STUPID ONES) BELLE AND ABBY THAT HE IS GONNA TAKE THEM HUNTING AND HE'S COMING HOME ALONE.
HE JUST GETS HIS SHOT GUN OUT AND THEY RUN FOR COVER.YA EVER SEE A 140 POUND DOG TRY TO FIT UNDER A COUCH.I TOLD YA THEY AIN'T TO BRIGHT.
STICK TO YOUR GUNS(NO PUN INTENDED) WHEN YOU SEE YOU GP.
I'M NOT CLEAR ON WHY YOUR NEURO DOESN'T HAVE YOU ON A MS DRUG,DARN IT CAN PROGRESS REALLY QUICK.
TIME TO TAKE THEM TO THE WOODS.
THIS NEEDS TO ADDRESSED WITH YOUR GP ALSO!!!!
T-LYNN
YOU ARE HILARIOUS HONEY!!! HA HA HA WE HAVE ALWAYS THREATENED OUR LITTLE DOG THAT IF SHE DOESN'T BEHAVE WE ARE GOING TO TAKE HER TO THE EDGE OF THE FOREST AND SET HER FREE...WE ACTUALLY TRIED, SORT OF, AND SHE KEEPS FINDING HER WAY BACK...I KEEP TELLING MY HUSBAND TO THROW THE BALL FARTHER!!!
YOU ARE RIGHT THOUGH, I AM GOING TO TAKE MY GP TO THE WALL AND ASK ABOUT THE MRI AND WHAT THE NEURO SAYS IN HER REPORT AND IF THERE IS NOTHING IN HER REPORT ABOUT IT I WILL ASK HER TO SEND A LETTER ASKING WHY THERE IS NO INFORMATION ABOUT THE MRI.
I KNOW THAT THE MRI I HAD IN NOVEMBER HAD LESIONS INDICATIVE OF MS BUT I DON'T KNOW IF THIS ONE HAS CHANGED SINCE THE LAST ONE I HAD THAT THIS NEW NEURO ORDERED. THIS MRI I HAD IN NOVEMBER AND IT WAS ORDERED BY THE OLD NEURO AND HE HAD HIS NURSE CALL ME TO SAY THAT THE MRI DID SHOW THAT I HAD MS.
TIME WILL TELL I GUESS AND I WILL LET YOU KNOW WHAT THE SCOOP IS WHEN I KNOW...IN THE MEANTIME, I WON'T VENTURE INTO THE FOREST IF THERE ARE ANY BIRDS AROUND OK? HA HA
LOTS OF HUGS,
RENA705
YOU ARE RIGHT THOUGH, I AM GOING TO TAKE MY GP TO THE WALL AND ASK ABOUT THE MRI AND WHAT THE NEURO SAYS IN HER REPORT AND IF THERE IS NOTHING IN HER REPORT ABOUT IT I WILL ASK HER TO SEND A LETTER ASKING WHY THERE IS NO INFORMATION ABOUT THE MRI.
I KNOW THAT THE MRI I HAD IN NOVEMBER HAD LESIONS INDICATIVE OF MS BUT I DON'T KNOW IF THIS ONE HAS CHANGED SINCE THE LAST ONE I HAD THAT THIS NEW NEURO ORDERED. THIS MRI I HAD IN NOVEMBER AND IT WAS ORDERED BY THE OLD NEURO AND HE HAD HIS NURSE CALL ME TO SAY THAT THE MRI DID SHOW THAT I HAD MS.
TIME WILL TELL I GUESS AND I WILL LET YOU KNOW WHAT THE SCOOP IS WHEN I KNOW...IN THE MEANTIME, I WON'T VENTURE INTO THE FOREST IF THERE ARE ANY BIRDS AROUND OK? HA HA
LOTS OF HUGS,
RENA705
YOUR A VERY STRONG PERSON YOU WILL DO JUST FINE GOING OUT FOR A WHILE
IF MS IS IN THE BACK OF YOUR MIND,DEFINATLY PERSUE IT.DON'T LET THIS NEURO JERK YOU AROUND.ONE RELAPSE IN MY BOOK IS TO DARN MANY.
ON FEB.6TH ASK YOUR GP WHAT YOUR NEURO STATED ABOUT YOUR LAST NEURO VISIT AND INQUIRE ON THE MRI REPORT.YOU NEED TO BE IMFORMED ABOUT YOUR RESULTS.
YOU DON'T WANNA HAVE AN ATTACK AND BELEIVE ITS MED WITHDRAWL AND IT BE MS.WHEN WE TAKE FROM OUR BODIES WHAT THEY ARE A CUSTOME TO,IT CAN TRIGGER SYMPTOMS.
IF YA GO TO THE EDGE OF THE WOODS DON'T USE BREAD CRUMBS FOR A PATH TO GET BACK HOME,BIRDS ARE HUNGRY THIS TIME A YEAR.(JUST FOOD FOR THOUGHT) OR THE LITTLE BIRDIES.
T-LYNN
IF MS IS IN THE BACK OF YOUR MIND,DEFINATLY PERSUE IT.DON'T LET THIS NEURO JERK YOU AROUND.ONE RELAPSE IN MY BOOK IS TO DARN MANY.
ON FEB.6TH ASK YOUR GP WHAT YOUR NEURO STATED ABOUT YOUR LAST NEURO VISIT AND INQUIRE ON THE MRI REPORT.YOU NEED TO BE IMFORMED ABOUT YOUR RESULTS.
YOU DON'T WANNA HAVE AN ATTACK AND BELEIVE ITS MED WITHDRAWL AND IT BE MS.WHEN WE TAKE FROM OUR BODIES WHAT THEY ARE A CUSTOME TO,IT CAN TRIGGER SYMPTOMS.
IF YA GO TO THE EDGE OF THE WOODS DON'T USE BREAD CRUMBS FOR A PATH TO GET BACK HOME,BIRDS ARE HUNGRY THIS TIME A YEAR.(JUST FOOD FOR THOUGHT) OR THE LITTLE BIRDIES.
T-LYNN
You are such a sweetheart! Thanks for your support and I agree that you have to look at what these dr.s are giving you cause like we said, they are only human and they do make mistakes!
Thanks again for your support honey and I will let you know how things are going...I am a little worried that since I have not left the house for over a week, I may be having a false sense of strength...have to go out for a bit tomorrow so that will tell me if I really am getting stronger or not...wish me luck!
Lots of Hugs,
Rena705
Thanks again for your support honey and I will let you know how things are going...I am a little worried that since I have not left the house for over a week, I may be having a false sense of strength...have to go out for a bit tomorrow so that will tell me if I really am getting stronger or not...wish me luck!
Lots of Hugs,
Rena705
Hey Honey...never too many questions my dear! I don't think they are going to address the MS, the new neuro says that it is not active and she feels that I have not had a relapse so I guess that is that!
What sort of tests would they use to confirm and MS remission? I have had the in office neuro exam and an MRI which she really didn't comment on.
She feels that I have to have like 2-3 relapses and she doesn't think I have had any so that in her mind excludes me from the DMD's completely even though I told her that I am on a insurance plan that will cover the DMD's regardless. She is just not going to budge on that I don't think.
I have an appointment with my g.p. (pcp) on Feb. 6th to so that she can see if my symptoms have improved but after that I don't know what the heck is going on...my neuro has said that if I have any problems I am to see my g.p. (pcp) and she will relate any problems to the neuro...gee, I wonder why I feel like I am being led to the edge of the forest and told to run free...I don't think they are going to do anything to help me do you?
The DMD's by the way have nothing to do with the seizures, I have not had a seizure for about 11 years!
Rena705
What sort of tests would they use to confirm and MS remission? I have had the in office neuro exam and an MRI which she really didn't comment on.
She feels that I have to have like 2-3 relapses and she doesn't think I have had any so that in her mind excludes me from the DMD's completely even though I told her that I am on a insurance plan that will cover the DMD's regardless. She is just not going to budge on that I don't think.
I have an appointment with my g.p. (pcp) on Feb. 6th to so that she can see if my symptoms have improved but after that I don't know what the heck is going on...my neuro has said that if I have any problems I am to see my g.p. (pcp) and she will relate any problems to the neuro...gee, I wonder why I feel like I am being led to the edge of the forest and told to run free...I don't think they are going to do anything to help me do you?
The DMD's by the way have nothing to do with the seizures, I have not had a seizure for about 11 years!
Rena705
I CHECK ALL MY MEDS PRESCRIBED BY MY DRS ON LINE TO CHECK FOR INTERACTIONS.
NOT ALL MEDS ARE COMPATIBLE FOR AN EXAMPLE
( ZANAFLEX AND CIPRO ) TAKEN TOGETHER CAN CAUSE A COMA LIKE SEDATION
INFO THAT MY GP AND PHARMACY DID NOT HAVE A FEW YEARS BACK.I FOUND IT ON THE NET.
OUR DRS ARE ONLY HUMAN,BUT WE REALLY NEED TO BE MORE PRO-ACTIVE IN OUR CARE AND CHOICES OF MEDS.
WHAT WORKS FOR ONE MAY NOT WORK FOR ALL.
RENA I AM SO GLAD THAT YOU ARE FEELING BETTER,I HOPE YOUR PROGRESION CONTINUE'S TO IMPROVE.
T
NOT ALL MEDS ARE COMPATIBLE FOR AN EXAMPLE
( ZANAFLEX AND CIPRO ) TAKEN TOGETHER CAN CAUSE A COMA LIKE SEDATION
INFO THAT MY GP AND PHARMACY DID NOT HAVE A FEW YEARS BACK.I FOUND IT ON THE NET.
OUR DRS ARE ONLY HUMAN,BUT WE REALLY NEED TO BE MORE PRO-ACTIVE IN OUR CARE AND CHOICES OF MEDS.
WHAT WORKS FOR ONE MAY NOT WORK FOR ALL.
RENA I AM SO GLAD THAT YOU ARE FEELING BETTER,I HOPE YOUR PROGRESION CONTINUE'S TO IMPROVE.
T
Oh yea, that's right, it all clicked when you said, the Dr would see you if you didn't see the other. . .I'm remembering. . . . I'm remembering - durn brain.
Okay, so, you are feeling a bit better with this adjustment, but are they going to do to address MS, even thought you have the other dx? I'm sorry if you've already discussed, and this would be repetative. I can pull up the old posts, and give myself a refresher, but I'm just being lazy I suppose.
With their use of MS remission, did they use tests to confirm that. Or, are they going on only symptoms?
It's just ashame that you've not been on meds for MS all these years. Is it something they are reluctant to do due to the grand mal seizures, or is this Neuro not in agreement?
Nice to see you back on, sorry if I'm asking too many questions,
be well,
SL
Okay, so, you are feeling a bit better with this adjustment, but are they going to do to address MS, even thought you have the other dx? I'm sorry if you've already discussed, and this would be repetative. I can pull up the old posts, and give myself a refresher, but I'm just being lazy I suppose.
With their use of MS remission, did they use tests to confirm that. Or, are they going on only symptoms?
It's just ashame that you've not been on meds for MS all these years. Is it something they are reluctant to do due to the grand mal seizures, or is this Neuro not in agreement?
Nice to see you back on, sorry if I'm asking too many questions,
be well,
SL
Well I think you are in luck db cause my old neuro has very little hair and I would say that he is in at least his 60's????
I am SO HAPPY that it doesn't appear to be the same guy and you should be ok!
T-lynn, I hope that my post brings some of this to light for a lot of people...we just take for granted that whatever our trusted doctor gives us is going to help us and not hurt us...HOWEVER, PLEASE ENSURE THAT YOU ARE PAYING ATTENTION!
We tend to put our whole lives into the hands of our physicians and face it, they are only human too! They do make mistakes, they do get lazy, they do tend to start to look around in a daze if they are not sure and that is when you need to pay attention!
It all comes back to being proactive in your own healthcare...I am proving to not be a good example of that and I will be the first to admit it. However, this does not mean that I have not tried...it is decidedly difficult to get involved when you are sick...I believe that if we could all find someone to be our brain and our voice at times like this we would all be a lot better off!
Rena705
I am SO HAPPY that it doesn't appear to be the same guy and you should be ok!
T-lynn, I hope that my post brings some of this to light for a lot of people...we just take for granted that whatever our trusted doctor gives us is going to help us and not hurt us...HOWEVER, PLEASE ENSURE THAT YOU ARE PAYING ATTENTION!
We tend to put our whole lives into the hands of our physicians and face it, they are only human too! They do make mistakes, they do get lazy, they do tend to start to look around in a daze if they are not sure and that is when you need to pay attention!
It all comes back to being proactive in your own healthcare...I am proving to not be a good example of that and I will be the first to admit it. However, this does not mean that I have not tried...it is decidedly difficult to get involved when you are sick...I believe that if we could all find someone to be our brain and our voice at times like this we would all be a lot better off!
Rena705
READING YOUR STORY BROKE MY HEART.IT DEFINATLY SEEMS AS IF YOUR OLD NEURO HAD BEEN OVER MEDICATING YOU.
WITH NEURONTIN,DRS WILL SAY THAT A SAFE DOSEAGE CAN BE 3000MGS A DAY.BUT THATS NOT EVERYONE AND NOT EVERYONE CAN TOLERATE THAT DOSEAGE.
YOUR OTHER MED I'M NOT FAMILIAR WITH.
I HAVE DAYS THAT I WONDER IF MY NEURO IS OVER MEDICATING ME,BUT MY MEDS EXCEPT FOR THE BACLOFEN ARE ALL LOW DOSES AND HAVE NOT BEEN RAISED IN 2 YEARS,EXCEPT THE NEURONTIN HAS JUST BEEN ADDED FOR NEUROPATHIC RIGHT TORSAL NERVE PAIN AND RIGHT SIDED FACE PAIN.BUT THATS 600 MGS A DAY.
I AM SO HAPPY THAT SOME OF YOUR SYMPTOMS HAVE SUBSIDED,MANY OF US DON'T REALIZE THAT MEDS CAN LEAVE RESIDUAL SIDE EFFECTS AND ITS ALWAYS GOOD TO RESEARCH THE SIDE EFFECTS AS TO MANY OF THESE EFFECTS CAN MIMIC MS.
THANK YOU FOR POSTING THIS AS HOPEFULLY IT CAN HELP ALL OF US RESEARCH OUR MEDS AND WHAT REACTIONS THEY CAN CAUSE.
T-LYNN
WITH NEURONTIN,DRS WILL SAY THAT A SAFE DOSEAGE CAN BE 3000MGS A DAY.BUT THATS NOT EVERYONE AND NOT EVERYONE CAN TOLERATE THAT DOSEAGE.
YOUR OTHER MED I'M NOT FAMILIAR WITH.
I HAVE DAYS THAT I WONDER IF MY NEURO IS OVER MEDICATING ME,BUT MY MEDS EXCEPT FOR THE BACLOFEN ARE ALL LOW DOSES AND HAVE NOT BEEN RAISED IN 2 YEARS,EXCEPT THE NEURONTIN HAS JUST BEEN ADDED FOR NEUROPATHIC RIGHT TORSAL NERVE PAIN AND RIGHT SIDED FACE PAIN.BUT THATS 600 MGS A DAY.
I AM SO HAPPY THAT SOME OF YOUR SYMPTOMS HAVE SUBSIDED,MANY OF US DON'T REALIZE THAT MEDS CAN LEAVE RESIDUAL SIDE EFFECTS AND ITS ALWAYS GOOD TO RESEARCH THE SIDE EFFECTS AS TO MANY OF THESE EFFECTS CAN MIMIC MS.
THANK YOU FOR POSTING THIS AS HOPEFULLY IT CAN HELP ALL OF US RESEARCH OUR MEDS AND WHAT REACTIONS THEY CAN CAUSE.
T-LYNN
As I started reading your reply I got nervous!! I thought, maybe this is the same guy, esp. when you said that yours is great at research, as I have heard the same about the guy I'm seeing. But I'm thinking that this cannot be the person, as mine only became a MD in 1996. By any chance was your doctor still a resident in 1993 when you first saw him? If not, I think I'm safe. My guy is still pretty young, if I were to guess, maybe late 30's? If you think we are talking about the same person, please let me know!
I found conversation a bit stilted with him; he seems pretty reserved, but knowledgeable. I noticed he had a couple of plaques on his wall saying "professor of the year" so hopefully that means if his students like him, he is good with people. I have only met with him once, so time will tell if this will be a good dr/patient experience.
I'm hoping that what with his being a newer neurologist, I won't suffer for any lack of experience on his part. And experience is no guarantee of being a good doctor....as looks like may have unfortunately been the case with the guy you were seeing. I hope things go much better for you with the new doc.
db1
I found conversation a bit stilted with him; he seems pretty reserved, but knowledgeable. I noticed he had a couple of plaques on his wall saying "professor of the year" so hopefully that means if his students like him, he is good with people. I have only met with him once, so time will tell if this will be a good dr/patient experience.
I'm hoping that what with his being a newer neurologist, I won't suffer for any lack of experience on his part. And experience is no guarantee of being a good doctor....as looks like may have unfortunately been the case with the guy you were seeing. I hope things go much better for you with the new doc.
db1
Hey honey...I was only treated with Tegretol back in 1993 because I presented with Grand Mal seizures prior to my diagnosis of MS. I have been on 400mg/daily of Tegretol since 1993 until this last year when he "neuro" upped the dose to 1200mg/day.
I was under the care of the "old neuro" (we'll call him dr. A.)when I was first diagnosed in 1993 but I didn't like him then so I changed to the "new neuro" (we'll call her Dr. B.) until last February. I had a severe attack of the Paratrigeminal Neuralgia and I couldn't get in to see Dr. B. so my pcp sent me back to Dr. A. at the University Hospital. He diagnosed me with the Paratrigeminal Neuralgia and agreed to treat me "as long as I didn't see any other physician about it." I still don't know why he would say something stupid like that!
So he supposedly "treated" me until I was able to get back in to see Dr. B who was quite upset that I had gone to see Dr. A. I explained to Dr. B. that I had to get help at the time for my severe pain and I couldn't get in to see her so what choice did I have? She agreed to see me again but I had to start over as a new patient like she had never seen me before.
I have had a he** of a year, ridiculous treatment by drs, lost my job, sick all the time and I am so tired of it all...and the worst part is, I still haven't had any answers as to what the cause is for my neuropathic pain, double vision etc. etc. etc.
I wish I could quit this **** the way my employer had me quit my job!
Rena705
I was under the care of the "old neuro" (we'll call him dr. A.)when I was first diagnosed in 1993 but I didn't like him then so I changed to the "new neuro" (we'll call her Dr. B.) until last February. I had a severe attack of the Paratrigeminal Neuralgia and I couldn't get in to see Dr. B. so my pcp sent me back to Dr. A. at the University Hospital. He diagnosed me with the Paratrigeminal Neuralgia and agreed to treat me "as long as I didn't see any other physician about it." I still don't know why he would say something stupid like that!
So he supposedly "treated" me until I was able to get back in to see Dr. B who was quite upset that I had gone to see Dr. A. I explained to Dr. B. that I had to get help at the time for my severe pain and I couldn't get in to see her so what choice did I have? She agreed to see me again but I had to start over as a new patient like she had never seen me before.
I have had a he** of a year, ridiculous treatment by drs, lost my job, sick all the time and I am so tired of it all...and the worst part is, I still haven't had any answers as to what the cause is for my neuropathic pain, double vision etc. etc. etc.
I wish I could quit this **** the way my employer had me quit my job!
Rena705
My Gawd I hope you are not seeing who I WAS seeing! It was at the MS Clinic in the U of A and we are not supposed to mention names but if this guy is hard to talk to and asks, "so what can I do for you today?" at the begining of every appointment, you should try to get in with someone else.
I was diagnosed by this guy in 1993 by way of an MRI and a LP that he did himself and he asked me at my last appointment in November if I had been previously diagnosed with MS! He did a CT Scan in March of last year and always called it an MRI and did not perform an MRI until November when I developed severe vertical double vision! At that time he was searching through my file looking for something and I asked him what he was looking for and he said "the report from your last MRI". I responded with, what good will that do, the last MRI I had done by you was in 1993!!! I have heard that this guy is great at doing research but he has no skills when it comes to dealing with MS patients let alone people generally.
I really, really hope that you have been seeing someone else...in my opinion, the neuro I am talking about is possibly dealing with early onset dementia...he has no idea what is going on and is really not that interested!
Good luck back at you honey and I will be praying that you have someone else...you can look at all my past posts and I don't pray for anything! This is worth praying for!
Rena705
I was diagnosed by this guy in 1993 by way of an MRI and a LP that he did himself and he asked me at my last appointment in November if I had been previously diagnosed with MS! He did a CT Scan in March of last year and always called it an MRI and did not perform an MRI until November when I developed severe vertical double vision! At that time he was searching through my file looking for something and I asked him what he was looking for and he said "the report from your last MRI". I responded with, what good will that do, the last MRI I had done by you was in 1993!!! I have heard that this guy is great at doing research but he has no skills when it comes to dealing with MS patients let alone people generally.
I really, really hope that you have been seeing someone else...in my opinion, the neuro I am talking about is possibly dealing with early onset dementia...he has no idea what is going on and is really not that interested!
Good luck back at you honey and I will be praying that you have someone else...you can look at all my past posts and I don't pray for anything! This is worth praying for!
Rena705
Rena - OMG, this is just unreal.
How long was the other treating you? And, remind me/us, did this other Neuro treat you with and of the ABCR meds back in 93 when you were 1st dx'd?
I'm am happy that this new mix of dosing has provided you with symptom relief! THAT is the best news of all!
You liked her huh? Awesome! So glad you've gotten someone new who listens.
SL
How long was the other treating you? And, remind me/us, did this other Neuro treat you with and of the ABCR meds back in 93 when you were 1st dx'd?
I'm am happy that this new mix of dosing has provided you with symptom relief! THAT is the best news of all!
You liked her huh? Awesome! So glad you've gotten someone new who listens.
SL
Rena, sorry to hear about your ordeal.
MS is new to me and I am very concerned about overmedication. I'm having some sensory symptoms and exploring treatment for this, but at the same time am reluctant to begin anything that may make things worse in the long run.
I notice you are in Edmonton and wondered whether your previous neurologist practices at the MS clinic at University Hospital? This is where I'm being seen. I'm happy with my neurologist so far but don't have much experience with him. Hoping this is a different guy than yours!
Good luck.
db1
MS is new to me and I am very concerned about overmedication. I'm having some sensory symptoms and exploring treatment for this, but at the same time am reluctant to begin anything that may make things worse in the long run.
I notice you are in Edmonton and wondered whether your previous neurologist practices at the MS clinic at University Hospital? This is where I'm being seen. I'm happy with my neurologist so far but don't have much experience with him. Hoping this is a different guy than yours!
Good luck.
db1
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
