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My DX story
Hi All, just in the mood to post my DX story today...here goes :)
My Mother was diagnosed with M.S. in 2000 after battling with many bouts of attacks and no Doctor being any the wiser as to her true condition. It was not until she went numb from the waist down for 6 wks that an MRI was finally ordered and M.S. was confirmed. Upon her diagnosis, she was explaining to me what her main symptoms were - fatigue, numbness, and tingling. Seeing as how I had the same exact symptoms a lot of the time, I thought it would be a good idea to let my Neuro know what had happened. She thought it was a good idea to order an MRI.
The MRI showed many lesions "suggestive" of M.S. I was then told that in order to be dx with MS that I would need either an attack to happen, or for my C.S.F. to conffirm the diagnosis. I decided to have a spinal tap, and the results confirmed the MRI diagnosis. The Neurologist then started me on Copaxone. I took Copaxone for approximately 4 months before I got tired of giving myself a shot every day and spoke to an M.S. specialist who prescribed me with Rebif. I took Rebif for about another 3 months when my health plan changed. My new Neurologist would not prescribe me any D.M.D.s because I did not truly meet the diagnostic crtieria for M.S. at the time. He said that I would need to have at least one definitive exacerbation.
I have since had my first exacerbation in the form of ON and just finished a 6 day course of oral Solu-Medrol at home. The course of Solu-Medrol was initially supposed to be for 3 days, but there was no improvement of my condition, so the Doc decided to prescribe 3 more days worth. When I asked the Doctor about beginning D.M.D.s again, she said that I would need to discuss it with my Neurologist. I did so, and my Neurologist booked me an appointment for the end of this month. I asked if we could push the appointment up so that I could begin taking medication sooner rather than later, but according to him, it would do absolutely no good for me to begin taking D.M.D.s two weeks sooner...even in the middle of an exacerbation.
Can anybody guess what health insurance provider I use? :)
My Mother was diagnosed with M.S. in 2000 after battling with many bouts of attacks and no Doctor being any the wiser as to her true condition. It was not until she went numb from the waist down for 6 wks that an MRI was finally ordered and M.S. was confirmed. Upon her diagnosis, she was explaining to me what her main symptoms were - fatigue, numbness, and tingling. Seeing as how I had the same exact symptoms a lot of the time, I thought it would be a good idea to let my Neuro know what had happened. She thought it was a good idea to order an MRI.
The MRI showed many lesions "suggestive" of M.S. I was then told that in order to be dx with MS that I would need either an attack to happen, or for my C.S.F. to conffirm the diagnosis. I decided to have a spinal tap, and the results confirmed the MRI diagnosis. The Neurologist then started me on Copaxone. I took Copaxone for approximately 4 months before I got tired of giving myself a shot every day and spoke to an M.S. specialist who prescribed me with Rebif. I took Rebif for about another 3 months when my health plan changed. My new Neurologist would not prescribe me any D.M.D.s because I did not truly meet the diagnostic crtieria for M.S. at the time. He said that I would need to have at least one definitive exacerbation.
I have since had my first exacerbation in the form of ON and just finished a 6 day course of oral Solu-Medrol at home. The course of Solu-Medrol was initially supposed to be for 3 days, but there was no improvement of my condition, so the Doc decided to prescribe 3 more days worth. When I asked the Doctor about beginning D.M.D.s again, she said that I would need to discuss it with my Neurologist. I did so, and my Neurologist booked me an appointment for the end of this month. I asked if we could push the appointment up so that I could begin taking medication sooner rather than later, but according to him, it would do absolutely no good for me to begin taking D.M.D.s two weeks sooner...even in the middle of an exacerbation.
Can anybody guess what health insurance provider I use? :)
Hi again Willow :)
I'm not doctor, but I think it's probably a good idea to stop as well if you are taking Prednisone tablets. I believe that Prednisone was the focus of the Optic Neuritis Treatment Trial, and it's low doses of oral Prednisone that the study claims causes Optic Neuritis to recur with more frequency. I do not understand why he would tell you that High dose Solu-Medrol isn't great for ON. My Neuro, an M.S. Specialist, and my Eye Doctor all disagree; although it is not uncommon for Medical opinons to vary widely.
Kenny
I'm not doctor, but I think it's probably a good idea to stop as well if you are taking Prednisone tablets. I believe that Prednisone was the focus of the Optic Neuritis Treatment Trial, and it's low doses of oral Prednisone that the study claims causes Optic Neuritis to recur with more frequency. I do not understand why he would tell you that High dose Solu-Medrol isn't great for ON. My Neuro, an M.S. Specialist, and my Eye Doctor all disagree; although it is not uncommon for Medical opinons to vary widely.
Kenny
My neuro told me today that Solu-Medrol wasn't great for ON and he only gave me a short burst of steroids for the pain but after reading Quix's post, I'm stopping it. Isn't a severe bout, just precautionary because of the stress I'm under with my husband's being in cardiac rehab in a facility.
Erin Brokovich around?
Erin Brokovich around?
Question about my recent trip to the ER with Trigeminal Neuralgia and being ignored for 4 hours:
I realize that the pain was short lived, so I'm not sure if this would legally qualify as "pain and suffering". All I want is my copay back...I don't feel that I should have paid for that displeasure. I filed a complaint, and the person I filed the complaint with told me "without telling me" that there was pretty much no way I was getting my copay back because of the form we signed when we arrived at the E.R.
My only option left is arbitration which I would have to pay for half the costs of if I were to lose....doesn't seem worth it for a $100 copay. I'm wondering if anybody thinks I could stand to gain more for 4 hours of pain and suffering.
Additional info: My blood pressure upon entering the ER was 180/90 (my normal BP is around 135/80)...obviously I was in distress and a Medical Professional should have realized that the elevated BP coupled with me crying and unable to speak meant that something more than mere "dental pain" was going on.
I realize that the pain was short lived, so I'm not sure if this would legally qualify as "pain and suffering". All I want is my copay back...I don't feel that I should have paid for that displeasure. I filed a complaint, and the person I filed the complaint with told me "without telling me" that there was pretty much no way I was getting my copay back because of the form we signed when we arrived at the E.R.
My only option left is arbitration which I would have to pay for half the costs of if I were to lose....doesn't seem worth it for a $100 copay. I'm wondering if anybody thinks I could stand to gain more for 4 hours of pain and suffering.
Additional info: My blood pressure upon entering the ER was 180/90 (my normal BP is around 135/80)...obviously I was in distress and a Medical Professional should have realized that the elevated BP coupled with me crying and unable to speak meant that something more than mere "dental pain" was going on.
Thanks a ton Sharon, I appreciate the info. I just found out from my Neuro today that in addition to Optic Neuritis, I had INTERNUCLEAR OPHTHALMOPLEGIA (ONI) hence the Nystagma. Another poster was curious as to why I was diagnosed with ON when I had Nystagma. Nystagma does not normally accompany ON.
Also, as to steroids, I believe you are correct in that they are used primarily to lessen symptoms and the length of time that person has symptoms with each attack. They do not have any effect on disease progression, as you stated.
Also, according to my Neuro, the ONTT did not include high dose steroids. The ONTT was based on oral prednisone given at 1mg/kg of body weight. He says that high dose steroids, oral or otherwise do not increase the recurrence of relapses.
Thanks,
Kenny
Also, as to steroids, I believe you are correct in that they are used primarily to lessen symptoms and the length of time that person has symptoms with each attack. They do not have any effect on disease progression, as you stated.
Also, according to my Neuro, the ONTT did not include high dose steroids. The ONTT was based on oral prednisone given at 1mg/kg of body weight. He says that high dose steroids, oral or otherwise do not increase the recurrence of relapses.
Thanks,
Kenny
Sorry forgot to mention that after 1st attack and MRI (no lumbar puncture) and a diagnosis of probable MS I was started on Copaxone, even before 2nd attack. My neurologist as a general rule of thumb will not see me until 4 weeks after IV steriods - It remains active in the system for that long apparently so evaluation of recovery cannot be accurate after steroids.
I have ON 3 times this year..... First right eye, 5 weeks later left eye (giving a definte diagnosis) i.e. Positive MRI suggestive of MS and 2 actue attacks at least 30 days apart. and again right eye 3 weeks ago.
I think neurologists need to look and possibly develop a more modern approach to a definative diagnosis. I feel so sorry for limbolanders who wait and wait for another attack to confirm this big question: IS it or ISNT it?????? Its unfair psychologically.
All of my optic neurits was treated with IV steriods. I think the idea of steriods is to dampen the symptoms but play no significant role in the outcome of eventual recovery - I could be wrong. But of note I had no pain with 1st two episodes just blurred vision. The most recent was painful upon movement.... on Day 2 pain was gone but vision is not great in right eye . . . . . time will tell.......
All the best,
Sharon
I think neurologists need to look and possibly develop a more modern approach to a definative diagnosis. I feel so sorry for limbolanders who wait and wait for another attack to confirm this big question: IS it or ISNT it?????? Its unfair psychologically.
All of my optic neurits was treated with IV steriods. I think the idea of steriods is to dampen the symptoms but play no significant role in the outcome of eventual recovery - I could be wrong. But of note I had no pain with 1st two episodes just blurred vision. The most recent was painful upon movement.... on Day 2 pain was gone but vision is not great in right eye . . . . . time will tell.......
All the best,
Sharon
Update:
My legs are still pretty wonky. My Neuro thinks it is motor related and there is also some spasticity. My diagnosis is "official" today since this is the first time I have actually been able to see my Neuro since my exacerbation began and I will begin taking Rebif tomorrow. I spoke with an M.S. specialist, and he agrees that I should not have been taken off of therapy. I asked my Neuro today why he took me off of Rebif to begin with, and he managed to stammer a very brief apology. His "Medical reason" was that I did not yet meet the diagnostic criteria for M.S.
My legs are still pretty wonky. My Neuro thinks it is motor related and there is also some spasticity. My diagnosis is "official" today since this is the first time I have actually been able to see my Neuro since my exacerbation began and I will begin taking Rebif tomorrow. I spoke with an M.S. specialist, and he agrees that I should not have been taken off of therapy. I asked my Neuro today why he took me off of Rebif to begin with, and he managed to stammer a very brief apology. His "Medical reason" was that I did not yet meet the diagnostic criteria for M.S.
Update:
Today, my legs are so heavy, it feels as if they are made of lead. When I try to walk, I am barely able to lift my legs high enough to take about a 12 inch step. At least the cramping has stopped...or at least I can't feel it anyway. I have an appointment with my Neuro on Wednesday. I'd like to hear him say that this symptom isn't M.S. related like he has with all of my other symptoms in the past, lol.
Today, my legs are so heavy, it feels as if they are made of lead. When I try to walk, I am barely able to lift my legs high enough to take about a 12 inch step. At least the cramping has stopped...or at least I can't feel it anyway. I have an appointment with my Neuro on Wednesday. I'd like to hear him say that this symptom isn't M.S. related like he has with all of my other symptoms in the past, lol.
Thanks for letting me know about Tegretol. I haven't started taking it yet since the pain hasn't returned since it was prescribed. Also, the "oral" solu-medrol that I took wasn't initially created to be taken orally. I was told by the pharmacist and my Dr. both that this was the IV formula. It was necessary for me to press a plunger at the top of the vial which would release liquid at the top of the vial (for dilution) into the powdery solution at the bottom of the vial. I then needed to take a fairly long needle, stick it in throught the top of the plunger and draw in the medicine.
I was then instructed to squirt this in OJ or grapefruit juice. I opted for the grapefruit. I am also learning that this may have been a mistake, although I haven't seen anything specificially with solu-medrol and grapefruit juice, I know that I cannot take Tegretol with grapefruit juice and there are other medications that shouldn't be taken w/ grapefruit either according to several members here and others that I've spoken with.
Thanks all for your comments, hopefully this will all be over soon.
I was then instructed to squirt this in OJ or grapefruit juice. I opted for the grapefruit. I am also learning that this may have been a mistake, although I haven't seen anything specificially with solu-medrol and grapefruit juice, I know that I cannot take Tegretol with grapefruit juice and there are other medications that shouldn't be taken w/ grapefruit either according to several members here and others that I've spoken with.
Thanks all for your comments, hopefully this will all be over soon.
COMMUNITY LEADER
Hi, i've been looking for the research study but so far its hiding from me, i'll come across it just cant seem to get my hands on it at the mo, i found this though....
Corticosteroids for multiple sclerosis
Examples
Generic Name Brand Name
dexamethasone
methylprednisolone Depo-Medrol, Solu-Medrol
prednisone
How It Works
Methylprednisolone, prednisone, and dexamethasone are corticosteroids. These medications shorten multiple sclerosis (MS) attacks by reducing inflammation on the brain and spinal cord.
A high dosage of methylprednisolone may be given through a vein (intravenous, or IV) daily for 3 to 5 days during an MS attack. Prednisone or methylprednisolone may then be given by mouth for several days after the IV treatment.
Why It Is Used
Corticosteroids may be used to treat sudden, severe (acute) MS attacks and acute optic neuritis.
How Well It Works
Treatment with corticosteroids may reduce the symptoms of MS attacks and help you recover more quickly.1 There is no convincing evidence that corticosteroids can reduce the progression of MS.
For people who have attacks of optic neuritis, IV methylprednisolone seems to be the best treatment.
Treatment with oral prednisone alone may increase the risk of another attack of optic neuritis.2
The side effects that may occur with prolonged corticosteroid use can be a problem for people who have frequent MS attacks and need repeated treatment with corticosteroids.
Intravenous (IV) corticosteroids may work faster and have fewer side effects than oral steroids alone. Treatment with IV methylprednisolone may be followed by treatment with oral prednisone or oral methylprednisolone. Toward the end of the treatment, increasingly lower doses are used so that the body can recover its own ability to produce natural corticosteroid hormones.
Corticosteroid treatment does not work for everyone. In some people who have severe or frequent attacks, corticosteroids are effective at first, but become less helpful after repeated use.
*********
Sorry your having a hard time!! :-(
Cheers.......JJ
Corticosteroids for multiple sclerosis
Examples
Generic Name Brand Name
dexamethasone
methylprednisolone Depo-Medrol, Solu-Medrol
prednisone
How It Works
Methylprednisolone, prednisone, and dexamethasone are corticosteroids. These medications shorten multiple sclerosis (MS) attacks by reducing inflammation on the brain and spinal cord.
A high dosage of methylprednisolone may be given through a vein (intravenous, or IV) daily for 3 to 5 days during an MS attack. Prednisone or methylprednisolone may then be given by mouth for several days after the IV treatment.
Why It Is Used
Corticosteroids may be used to treat sudden, severe (acute) MS attacks and acute optic neuritis.
How Well It Works
Treatment with corticosteroids may reduce the symptoms of MS attacks and help you recover more quickly.1 There is no convincing evidence that corticosteroids can reduce the progression of MS.
For people who have attacks of optic neuritis, IV methylprednisolone seems to be the best treatment.
Treatment with oral prednisone alone may increase the risk of another attack of optic neuritis.2
The side effects that may occur with prolonged corticosteroid use can be a problem for people who have frequent MS attacks and need repeated treatment with corticosteroids.
Intravenous (IV) corticosteroids may work faster and have fewer side effects than oral steroids alone. Treatment with IV methylprednisolone may be followed by treatment with oral prednisone or oral methylprednisolone. Toward the end of the treatment, increasingly lower doses are used so that the body can recover its own ability to produce natural corticosteroid hormones.
Corticosteroid treatment does not work for everyone. In some people who have severe or frequent attacks, corticosteroids are effective at first, but become less helpful after repeated use.
*********
Sorry your having a hard time!! :-(
Cheers.......JJ
I learned something new today. There is an oral Solu-Medrol. It is a lot less expensive than when given by IV.
Sorry to hear about the Kaiser ER experience. Too many person in the medical field are ignorant on the subject of MS.
I am "bumping" your message up because I think (not sure) that Tegretol should be taken daily to keep away the TN pain. Perhaps when this flare calms down a bit you can decide to taper off of it.
Others here have a lot of firsthand experience with TN. I've never had it but I hope someone else will jump in with what they know.
I've never heard of "oral IV-Solumedrol." I will look on the net but I have a hunch they are feeding you a bunch of bull. An IV drug bypasses the gastrointestinal system so even if the med is the same you lose the benefit of taking it intravenously.
Hope you get to feeling better soon. It is not unusual to feel worse immediately after having a course of Medrol.
Anyone else?
I am "bumping" your message up because I think (not sure) that Tegretol should be taken daily to keep away the TN pain. Perhaps when this flare calms down a bit you can decide to taper off of it.
Others here have a lot of firsthand experience with TN. I've never had it but I hope someone else will jump in with what they know.
I've never heard of "oral IV-Solumedrol." I will look on the net but I have a hunch they are feeding you a bunch of bull. An IV drug bypasses the gastrointestinal system so even if the med is the same you lose the benefit of taking it intravenously.
Hope you get to feeling better soon. It is not unusual to feel worse immediately after having a course of Medrol.
Anyone else?
Update on Exacerbation:
Wow, I've heard that the first exacerbation is usually the worst, but this is ridiculous!
The Optic Neuritis all but disappeared on day 12. Once the Optic Neuritis started getting better, I started feeling extremely weak in both legs - the calves and thighs. So weak that I could hardly walk. I had not experienced symptoms with my legs previously.
About 4 days later, I began to experience a burning sensation in one of my teeth. I tried to dismiss it as too much sugar and brushed my teeth. Once I brushed my teeth, the pain spread to 4 of my other teeth. About 20 minutes later, the pain moved to the corner of my jaw and stayed there for about 5 minutes. The pain then rapidly traveled up my jawline and settled just above and toward the front of my right ear. At this point, the pain was a 10 on a scale of 10 and all I could was pull my hair and cry. This pain lasted about 1-2 minutes and then went back to the corner of my jaw. For the next 4 hours, the pain would move to the spot near my ear and spike to a 10 again.
During this time, my wife had called the advice nurse and a doctor. The doctor prescribed percocet for the pain - like that was going to do anything. After 4 hours, I decided enough was enough and my wife and I headed to the Emergency Room.
My wife explained to the Triage nurse that I have M.S. and that I am having an exacerbation of other symptoms. We also mentioned that we thought the condition might be Trigeminal Neuralgia. The triage nurse categorized the pain as "dental pain" and sent me to the minor trauma ward. Keep in mind, that I was in tears almost the entire time the triage nurse was "examining" me.
After 3 more hours of waiting in the E.R. the pain all but stopped. I decided to see the doctor there for giggles anyway. The Dr. stated that there was no way that dental pain could be a symptom of Trigeminal Neuralgia. Apparently he does not know much about the condition. At any rate, I eventually convinced him to call my Neuro and the neuro prescribed Tegretol over the phone.
Thank God, the pain has not come back yet, and I'm hoping it does not. I am truly afraid to eat, thinking that chewing may trigger another attack.
At any rate, I just needed to share :)
Kenny
Wow, I've heard that the first exacerbation is usually the worst, but this is ridiculous!
The Optic Neuritis all but disappeared on day 12. Once the Optic Neuritis started getting better, I started feeling extremely weak in both legs - the calves and thighs. So weak that I could hardly walk. I had not experienced symptoms with my legs previously.
About 4 days later, I began to experience a burning sensation in one of my teeth. I tried to dismiss it as too much sugar and brushed my teeth. Once I brushed my teeth, the pain spread to 4 of my other teeth. About 20 minutes later, the pain moved to the corner of my jaw and stayed there for about 5 minutes. The pain then rapidly traveled up my jawline and settled just above and toward the front of my right ear. At this point, the pain was a 10 on a scale of 10 and all I could was pull my hair and cry. This pain lasted about 1-2 minutes and then went back to the corner of my jaw. For the next 4 hours, the pain would move to the spot near my ear and spike to a 10 again.
During this time, my wife had called the advice nurse and a doctor. The doctor prescribed percocet for the pain - like that was going to do anything. After 4 hours, I decided enough was enough and my wife and I headed to the Emergency Room.
My wife explained to the Triage nurse that I have M.S. and that I am having an exacerbation of other symptoms. We also mentioned that we thought the condition might be Trigeminal Neuralgia. The triage nurse categorized the pain as "dental pain" and sent me to the minor trauma ward. Keep in mind, that I was in tears almost the entire time the triage nurse was "examining" me.
After 3 more hours of waiting in the E.R. the pain all but stopped. I decided to see the doctor there for giggles anyway. The Dr. stated that there was no way that dental pain could be a symptom of Trigeminal Neuralgia. Apparently he does not know much about the condition. At any rate, I eventually convinced him to call my Neuro and the neuro prescribed Tegretol over the phone.
Thank God, the pain has not come back yet, and I'm hoping it does not. I am truly afraid to eat, thinking that chewing may trigger another attack.
At any rate, I just needed to share :)
Kenny
Hi Quix,
I was thinking some more about the study between Oral steroids and ON. Even being with Kaiser at a facility where they almost killed 2 MS patients by way of mis-diagnosis, I find it hard to believe that they would want me to have recurrences of ON lol. I'm a huge pain in the doctor's behind and they usually try to please me a little more than the average patient it seems :)
At any rate, I was taking the IV Solu-Medrol formula, but was taking it orally. It was the same exact solution that they give via IV, it was just the method of ingestion that changed. Do you know if it is Oral steroids in general as a method of ingestion that is likely to increase the onset of ON or if there is possibly something in other "oral" steroids that has this effect?
Thanks,
Kenny
I was thinking some more about the study between Oral steroids and ON. Even being with Kaiser at a facility where they almost killed 2 MS patients by way of mis-diagnosis, I find it hard to believe that they would want me to have recurrences of ON lol. I'm a huge pain in the doctor's behind and they usually try to please me a little more than the average patient it seems :)
At any rate, I was taking the IV Solu-Medrol formula, but was taking it orally. It was the same exact solution that they give via IV, it was just the method of ingestion that changed. Do you know if it is Oral steroids in general as a method of ingestion that is likely to increase the onset of ON or if there is possibly something in other "oral" steroids that has this effect?
Thanks,
Kenny
Thank you for all of the comments. I was not aware of the issue with Oral Steroids and ON and thank you for bringing that to my attention.
The healthcare system is Kaiser Permanente, California :)
I happen to go to a medical facility where two patients with MS almost died because each of them had numbness on one side of their body and informed their neuro. In both cases, the neuro decided straight away that it had to be MS and put them on steroids - no MRI, nothing else to confirm. As it turns out, in each case, it was an operable tumor in the brain, not MS. Luckily the old head of neuro is no longer there, and things seem to be at least a little bit better.
The healthcare system is Kaiser Permanente, California :)
I happen to go to a medical facility where two patients with MS almost died because each of them had numbness on one side of their body and informed their neuro. In both cases, the neuro decided straight away that it had to be MS and put them on steroids - no MRI, nothing else to confirm. As it turns out, in each case, it was an operable tumor in the brain, not MS. Luckily the old head of neuro is no longer there, and things seem to be at least a little bit better.
COMMUNITY LEADER
Welcome to our corner of the web!
Sorry for the mucking about you've been going through, your poor mum too!!! I'm a little confused as to what your neuro is thinking, there isn't any question of not meeting the dx criteria, you definitely already did. After being dx by an MS neurologist and put on DMD's already, your new neurologist should not of questioned its validity, sheeesh your LP even confirmed the dx, so i just dont get what your new neurologist is thinking or waiting for.
Quix beat me to it, i was going to point out the oral steroid vs IV steroids for ON, i cant understand why IV steroids were not ordered. If it was ordered by your current neuro, just how experienced and knowledgable is he/she on MS?
Anyway, i'm shocked your still having to play the waiting game, so not fair.
Cheers......JJ
Sorry for the mucking about you've been going through, your poor mum too!!! I'm a little confused as to what your neuro is thinking, there isn't any question of not meeting the dx criteria, you definitely already did. After being dx by an MS neurologist and put on DMD's already, your new neurologist should not of questioned its validity, sheeesh your LP even confirmed the dx, so i just dont get what your new neurologist is thinking or waiting for.
Quix beat me to it, i was going to point out the oral steroid vs IV steroids for ON, i cant understand why IV steroids were not ordered. If it was ordered by your current neuro, just how experienced and knowledgable is he/she on MS?
Anyway, i'm shocked your still having to play the waiting game, so not fair.
Cheers......JJ
Are you aware that there is data to suggest that ON treated with oral steroids - Medrol - results in a higher likelihood of recurrences of the ON than treatment with IV steroids or nothing at all.
In the 15 year Optic Neuritis Treatment Treat (ONTT) they gained a lot of info about the effect of treating acute ON. Steroids, both IV and oral were shown to help the acute symptoms of ON. But, neither steroids (IV nor oral) nor placebo changed the ultimate out come of visual deficit. The only thing that was noticeable was that oral steroids appeared to predispose the patient to MORE attacks of ON. Even with the increase in attacks, though, the ultimate outcome was unchanged, but the patient suffered more.
I can find you multiple references for this if you would like. I am shocked (but not surprised) to here that not all neuro know this. It has been widely publicized in the medical literature.
Quix
In the 15 year Optic Neuritis Treatment Treat (ONTT) they gained a lot of info about the effect of treating acute ON. Steroids, both IV and oral were shown to help the acute symptoms of ON. But, neither steroids (IV nor oral) nor placebo changed the ultimate out come of visual deficit. The only thing that was noticeable was that oral steroids appeared to predispose the patient to MORE attacks of ON. Even with the increase in attacks, though, the ultimate outcome was unchanged, but the patient suffered more.
I can find you multiple references for this if you would like. I am shocked (but not surprised) to here that not all neuro know this. It has been widely publicized in the medical literature.
Quix
Humana? (my personal "favorite" :((((
Oh, California - Kaiser Permanente?
Seriously, when you had been having episodes of tingling. Did they not occur as attacks? And, if they did, why were they not counted as such. MS as a diagnosis is not made from just MRI and LP. That all seems weird. But, now with a convincing ON under your belt, I see that you are a shoe-in.
In the great realm of lesions and not, a three week wait will not make that much difference. However, I realize that when it is your own brain that seems to slowly be dissolving, any wait at all seems too long. an you request to be on a cancellation list?
Sorry you are caught in a poorly responsive system.
Hang around and we can all get to know you.
Quix, MD
Oh, California - Kaiser Permanente?
Seriously, when you had been having episodes of tingling. Did they not occur as attacks? And, if they did, why were they not counted as such. MS as a diagnosis is not made from just MRI and LP. That all seems weird. But, now with a convincing ON under your belt, I see that you are a shoe-in.
In the great realm of lesions and not, a three week wait will not make that much difference. However, I realize that when it is your own brain that seems to slowly be dissolving, any wait at all seems too long. an you request to be on a cancellation list?
Sorry you are caught in a poorly responsive system.
Hang around and we can all get to know you.
Quix, MD
Hi Ken!
You know, before I even clicked on your post, I felt your heavy sigh inbetween story today ...and(sigh) ...here goes. lol
I'm so glad you found us! Your story sounds quite familar to me. Lately we have had members who's Drs 2nd guessed their dx and those who are worried their Dr. "will" 2nd guess their dx.
I'm so sorry your Mom had to suffer so long w/out knowing. And, for you, though your not on a DMD at this time, I'm glad you were on a couple if even for a short time. The Dr. you are seeing is the Dr. who dx'd you originally after results from the spinal tap?
To ease your mind, your Dr. is right about the 2 weeks not making much of a difference. It takes time for the meds to give you protection. But, to move the appt. up so this Dr. can see you during an attack would have been a good thing. Regardless it's in 2 weeks, and it sounds to me that you'll be on your way to getting back on track.
Since you seem to get sick of the injections, maybe the Avonex would be something to consider since it's once a week? Just a thought - it's one I think of often. I'm on Rebif and getting pretty sick of the needles lately.
I'll not even guess at the HC provider. All of them are changing their ways, and they get harder and harder to figure so no guess by me.
Thank you so much for joining us. Look forward to having you with us,
-Shell
You know, before I even clicked on your post, I felt your heavy sigh inbetween story today ...and(sigh) ...here goes. lol
I'm so glad you found us! Your story sounds quite familar to me. Lately we have had members who's Drs 2nd guessed their dx and those who are worried their Dr. "will" 2nd guess their dx.
I'm so sorry your Mom had to suffer so long w/out knowing. And, for you, though your not on a DMD at this time, I'm glad you were on a couple if even for a short time. The Dr. you are seeing is the Dr. who dx'd you originally after results from the spinal tap?
To ease your mind, your Dr. is right about the 2 weeks not making much of a difference. It takes time for the meds to give you protection. But, to move the appt. up so this Dr. can see you during an attack would have been a good thing. Regardless it's in 2 weeks, and it sounds to me that you'll be on your way to getting back on track.
Since you seem to get sick of the injections, maybe the Avonex would be something to consider since it's once a week? Just a thought - it's one I think of often. I'm on Rebif and getting pretty sick of the needles lately.
I'll not even guess at the HC provider. All of them are changing their ways, and they get harder and harder to figure so no guess by me.
Thank you so much for joining us. Look forward to having you with us,
-Shell
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