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Just Starting

I have had Optic Neuritis in my right eye since March and after seeing my optometrist and an ophthalmologist I was sent for an MRI which showed some lesions.  Went to a Neurologist who examined me and went over the MRI.  What is unusual in my case is my age, 59, and this is the first symptom I have ever had, I have no other symptoms.  The optic neuritis is not severe (I have Uthoff's symptoms) and I go without symptoms for days but they do come back with exercise and drinking hot liquids, but my vision at worst is 20-50 (quickly goes back to 20-25,20-30).  My neurologist said that there was not a lot of plaque.  He is sending me for blood work to test for the usual (Lyme disease, Lupus, etc) and is going to do a lumbar punch.  All tests will be finished by Friday.  He said that if all the other tests come back negative then I probably have benign MS with only the slight case of Optic Neuritis and no other symptoms and he does not think I would need any drug therapy at this time, except he wants me to do IV cortisone for the ON.  I hate searching the internet as MS seems so variable that it is just too scary to read what could happen (I trust my doctor and will just listen to him) but when I did search about IV cortisone I really did not find any good research on the effectiveness of doing this - most of the research is from years ago.  I have read of cases where it clears it up for a short period of time but then comes back again but once again who knows how serious their ON was and also was it part of recurring MS.  I can easily live with the symptoms I have even if they do not go away.  I, of course, will discuss this with my doctor, but wanted to know if anyone knows about current studies of the treatment, so I can talk about it better with my doctor. I don't think this will be a prolonged treatment.  Thanks.
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Avatar universal
Had the lumbar punch yesterday.  The procedure did not hurt (except for a slight sting when the anesthesia was injected) a bit of pressure when the punch when in (had a slight pain that went down my leg for a brief second, which my neurologist said was normal) but no feeling when the spinal fluid was taken out, the whole process took about 10 minutes with most of it waiting for the fluid to be collected (because of the thin needle used).  My doctor told me to stay lying down for an hour and also took some blood to go along with the fluid (he told me why but I forget exactly what he said).  He told me to go home and stay in bed the rest of the day, drink fluids and resume normal activities today, but not to do any heavy lifting till Monday.  I had a small headache during the day (wonder if it was related as it did not get worse when I stood up), took some Tylenol, and am fine this morning.  My results will be back on Wednesday.  I asked him if it really was possible that I had Lyme disease (I do go to Connecticut a lot and have never been tested) with my symptoms, he said yes but he thinks it more likely it is MS.  He explained the different DMD drugs to me, but said with my slight symptoms we should wait and see how it goes.  I do have a question.  If I eventually have to go on DMD drugs there are a few choices.  The one a week injection, avonex does not appeal to me for a few reasons - it can give you flu like symptoms and it also needs close monitoring with blood tests (for liver reactions and RBC and WBC counts).  I exercise on Sat. and Sun. and I also to take Crestor which can effect the liver, also if it effects the immune system there could be a problem with the swine flu or any flu if I catch it (I am a teacher and am exposed to many teenagers).  There are also many side effects of the drug:

From Wikipedia:
"The most commonly reported side effects are injection site disorders, flu-like symptoms, poor results on liver function tests and blood cell abnormalities. More serious side effects include depression, seizures or liver problems.

While these drugs improve certain diagnostic test results they do not cure MS and many patients report no perceived improvement but serious side-effects that substantially reduce quality of life. Over time, physiological tolerance and reduced effectiveness can occur due to the development of antibodies to the drugs and side effects may persist even after discontinuation."

That would leave Copaxane or similar drugs.  But there is controversy about this drug.  Here is an interesting article from Wikipedia, which is why I am going to take a wait and see attitude at this time:
"The following paragraph was recently erased by user Uri Ravel without reason. This is a cease and desist request. The paragraph cites peer-reviewed articles that have appeared in major medical journals. It is a warning to patients using Wikipedia that should not be compromised by special interest groups.

Besides its beneficial effects, Glatiramer acetate also induces immune reactions and an immune memory against myelin, in particular against myelin basic protein (MBP). [6] This has two important implications. Firstly, Copaxone might increase the risk of an individual with CIS by a large factor [7][8] since about 40% of these patients have not yet mounted an immune response to MBP. The study behind the FDA approval of the drug for Copaxone (the PRECISE trial) had the existence of two large (>6mm) active lesions at CIS presentation as enrollment criterion, and there exist no data on patients with less severe presentations of CIS. The high risk patients singled out by PRECISE are more likely to already have mounted an MBP immune response [9]. Approval of the drug for CIS in general is misleading and potentially hazardous. Secondly, if ever discontinued by a patient, the beneficial effects provided by continuous administration of antigenes ceases, and the harmful effects of induced immune reaction against MBP take over. This could negatively affect (i.e. increase the relapse rate and disability progression) of MS patients who interrupt Copaxone for any reason, for example if they decide to switch to a new drug."

So the question ends up is it worth the possible side effects to treat my MS with my slight symptoms (if it turns out to be MS) and my answer is no, I will wait, and hope and pray that if it does get worse at a later date, there my be better options then these drugs and ones in pill form (which I read that they are working on and are close to asking for FDA approval).
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Avatar universal
Thanks for your comments, I really appreciate them.
I had the blood tests yesterday and am going to have the lumbar punch tomorrow.  I should have all the results back next week and will post what they were.  I will talk to my doctor about the IV steroids, and see what he says.  He is the head of the Neurological Institute in one of the major hospitals in NY and not for only that reason, but how he treated me and how he presented, really makes me feel confident.  My doctor just said I have ON when I described my symptoms, but when I was looking on the internet Uhtoff's describes how the vision in ON gets worse when you exercise etc. (I do not have any pain in the eye) so that is why I added that.  I realize that if it turns out that I have 'benign MS" there is the possibility that the MS can turn worse at a moments notice but most of the studies I have read about say that there is a good chance (I know) I could go at least 5 years without developing additional symptoms (if we can believe them).  Right now my EDDS score is 1.0.  I feel I am going to listen to my doctor and adopt a wait and see attitude, knowing that there is a good probability that in 1 or 2 years there are going to be oral medications out that might even be better then the injection drugs.  I also know that the drug I would probably take if I had to is copaxone and once again studies show that it takes about a year to build up to where it decreases the number of recurrences.  Something else I liked about what my doctor said - of course he has a lot of patients on the DMD, but said that all these studies are funded by the drug companies that make these DMD drugs and he is a bit skeptical about some of the results, on the other hand he said many of the doctors doing research on MS also have MS and this is a very good thing.  I happen to be a mathematician and know a bit about how statistics work and know how percentages are used and how they can be very misleading.  Once again thanks for you comments and concern, I do not like to talk about my health to the people around me and this is a place I can express my feelings.
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921525 tn?1248122687
Hi, I was just recently dx'd with MS after my first bout with optic neuritis. I had no previous symptoms, but after an extensive amount of bloodwork, plus the MRI results and the ON, the dx was given.
In my case, the optic neuritis was more severe when it set in. For three days previously it had seemed like maybe I needed a new lens prescription for my left eye. I made an optometry appointment, though I had a nagging feeling something was different. Then I developed a pain, almost like a sinus infection on that side. When I woke up with no vision in my left eye, other than a very foggy, very slight amount around the periphery, a very long memorial day weekend began. I was seen in the emergency room, opthamology, MRI, and by the neurology doctor and residents on call. I was admitted for three days and received intravenous steroid treatment, once a day at 1000mg, which in my case didn't do much immediately. I noticed a very slight change, but for the most part still couldn't see anything out of the left eye. After leaving the hospital, I was prescribed a 15 day taper of oral steroids to help further reduce the inflammation which was causing the vison loss. I did notice an improvement in my vision by five days, and within one week it was notably better. I saw a neuroopthamologist at the very beginning of June, and my vision had improved greatly, though there were some problems registering greens.
I agree, that if you do not want to take steroids, you should discuss it with your doctor. If the symptom is not greatly affecting your daily functioning at this time, and it clears up relatively quickly and fully on it's own, then it may not be necessary. The intravenous steroids can rack up a significant bill if you have to be admitted for it, so I would strongly fight to avoid being admitted. On the other hand, the oral steroids are linked with a sooner recurrence of ON than the intravenous are - not to mention the acid reflux that can develop from their usage.
I am starting my DMDs shortly. Despite my lack of any other "major" symptoms, it was agreed upon by the doctor and I that it seemed advisable to start treatment to help try to prevent the further development of damage to my brain or CNS. It is a lot to swallow at first, especially as the treatments at this time are injectable and that can seem scary at first. However, new treatments are on the horizon - my doctor told me that they are hoping a new pill form will be available by the beginning of next year, and many others are constantly in testing through clinical trials. The best way to treat this is early, so please don't hesitate to consider the medications.
No one, and that INCLUDES your doctor, can tell you what to expect or how long it will be until your symptoms may progress to include something else. Also, your doctor should have mentioned that the MRI results cannot be interpreted as if they will tell what sympoms may occur - the location of the lesions, size of the lesions, number of lesions, etc. has no bearing on the presentation of the disorder. A good neurologist will tell you that, because the brain has enough "free space" in it's neuronal composition to make up for some damage at first. Thus, what is visible to us on the findings, though one could attempt to link it to certain areas of the brain and then to certain brain "functions," is not necessarily reflective of what you will experience.
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572651 tn?1530999357
Hi and welcome to the MS forum here at MedHelp.  Yes, there is tons of information on the web, with varying degrees of accuracy.  You have found a great knowledgeable community here who works very hard every day at staying current on the news and getting our answers right.

That you are just being dx'd at age 59 really is not that unusual.  I was just dx'd last year at 54.  Ess was in her 60's before she was given her dx, and our dear leader Quixotic was also in her 50's.  Age is not so much the factor that doctors would like us to believe.

When you talk about benign MS, be sure to always say *probably* because we have no way of knowing if our MS will stay benign until we are on the autopsy table.  The truth is our MS can turn ugly without any provocation and no advance warning.  That is why here we advocate strongly for everyone with MS to be on a DMD to help stack the odds in our favor.

Please read our health pages on treatments and diagnosis and you will see that being on a DMD is really a pretty good option.  You already have two classic MS problems - ON and Uthoff's.  We would not want you to pick up anymore if it can be avoided.

Your ON is going to resolve itself to the point it will consider normal, with or without the use of Solumedrol (IV steroids).  The treatment will help you to return to that point sooner.  Whether you take the treatment is soemthing you should discuss thoroughly with your doctor.  

I hope you will come back and share more of your experience with us here.

wishing you well,
Lulu
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