I have been reading here this evening and am amazed at what I have read.
My Story is that I started having ms symptoms and went to several doctors who started testing me by doing brain mri and then eventually did a lumbar puncture. That test of overwhelmingly positive for ms. I was sent to the ms center at ucsf. When the neuro sent me there she told me I had ms and that they would be very interested in me because I was in the minority. She also told me that I was very lucky that I was not disabled more than I am. I am 57 now and that was almost 4 years ago. Since that time, I have had two more lumbar punctures and several mris along with pet scan, evoked pot, visual potentials... They were normal except for the repeated lumbar punctures. I continue to get worse..can't stand very long, weakness, dysphagia that has been dx as uncoordinated paristalsis. very poor temperature regulation, numbness, chronic sinus infections, and the list goes on. The reason I would like a dx is that maybe I could go on meds that would help stop the progression. I have been offered copaxone, and avonex. But only one doctor out of 5 neuros will give me a diagnoses. What would you do???
Welcome to the MS Forum. I guess the first question I would have to ask is do you know what strength machine your MRI's were done on? i.e., a 1.5Tesla, a 3Tesla? And where the MRI's done with and without contrast dye?
If one of your Neuro's has said definite MS, I would accept treatment with one of the disease modifying drugs, then seek out further explanation of no lesions seen on MRI. That way, you are covered to hopefully prevent any further damage and further attacks. I would also suggest that if you have not seen an "MS Specialist" that does nothing but see patients with MS, that you find one soon to be checked out further.
I have been diagnosed with MS for over a decade and I have not heard of the MRI being totally normal and having an LP that is positive for "O" bands. (Well I take that back, I have heard of it, but not with a diagnosis of MS.) I am sure that our resident retired doctor, Quixotic1 would be able to answer this question for you. She is not a Neurologist, but is well-read on the subject of MS.
You definitely have symptoms that relate to MS, in the absence of lesions on MRI. If it were me, I would take the Copaxone or Avonex, while your doctor's look into this more thoroughly.
Please keep us posted and feel free to join in on the other discussions. We're glad you're here...
Greetings and welcome officially to the forum. I believe in the health pages there is more information about this possibility or negative MRI and positive LP. In the meantime, if you can get on one of the DMD's from any neuro, I would do so immediately. I was just definitely diagnosed last week and am waiting to start Copaxone. I would be happy to tell you why I made that choice if you send me a message.
Hi and welcome to the forum, we sound a lot alike....i am 64 and not diagnosed yet either. You have had a lot more tests than i have. I also want a diagnosis,so i can take something to slow this down. Not sure where you live but i will most likely go to ucsf to the ms clinic there, I was there last week for a test. Its to understand why they dont give you the meds, do they have to get a majority vote first ? Geez... I have a Dr appt tomorrow and will see what he says.
I do feel fortunate because i must have gone a long time without getting really sick, i did have symptoms now that i look back so it doesnt surprise me at all.
I will watch for your posts..hugs, meg
Keep us posted
We can count ourselves among the fortunate that at our age in the 50's and 60's we are finally getting slapped with this MS reality and don't appear to have done ourselves much significant harm by being oblivious to early symptom warning signs that we now know were not right. Whew, that's quite a sentence - I hope that makes sense to you....
Like you I probably have had symptoms for 15-20 years and just learned to comensate in other ways to counteract them. For me, for quite a while I was very sedentary - if you don't move the dizziness doesn't bother you as much! :-) My numb leg and foot drop wasn't so bad if I didn't walk for very long. My heart attack in January made me get up and exercise and once that started I couldn't ignore the MS symptoms.
Perhaps us older women should start our own subcategory of MS patients - any ideas for names? LOL
Thanks for the comments. I hate the teaching hosptial I went to. I went to UCSF to the ms clinic there. They kept doubting my lumbar puncture results and kept making me have another one. Now this new neuro who is not a specialist has ordered another one. The doctor who dx me with ms after the frist positive lp told me after hearing that they made me have two more lps..that she couldn't believe they made me have more. It seems that once you have o-bands they don't go away. I had 8 in the first one and 12 both other times. That is even a lot for ms but no other dx. What should I do. I can't seem to find a doc that will look any further or give me a dx except one. Maybe I should just along with this guy and have the brain scan and lp done again and see what happens and then go back to the original doc who originally dx me? Since my dad is terminal I can't leave the county right now so I can do nothing right now anyway! Thanks for all of your comments and I look forward to the resident doc seeing this.
Hugs to all,Cynd
I do not have a Dx of MS, but am diagnosed with another disabling autoimmune disease, SLE, or lupus. In my experience, having been sick for many years (not a little sick, I mean, cant work, cant get out of bed, really bad pain, etc) doctors "suspected" lupus, but would not give me an official Dx until my blood work started to show the disease. Like MS, lupus has a lot of mimic diseases, and typical dx time is 3-5 years. I now do have an official Dx and am being treated with lupus meds.
In saying this, I would do ANYTHING to have had a doctor start treating me BEFORE an official Dx. These disease progress, and wthout medication, may continue progressing. Had I been put on the treatment for lupus a few years ago, I would not have the level of disease activity that I do today. The meds have made me better, and I cant help but think of how different my life would be today had someone had the guts to try the meds before the official Dx.
In my experience, most docs will not do that, and I think that if you have a doctor(s) that are willing to try the meds for you, you should jump on that opportunity. For me, I dont care if they called it lupus, MS or Lauri's Disease, for all I care, as long as Im being treated - it doesnt matter what the condiiotn is called. Besides, I would think that if they feel strongly enought to offer you medication, then they may assume your MRI will become positive eventually.
Good luck to you , and let us know what you decide. You have found a great site here, you will be happy you found it!
Take care ,
Hi, and another big welcome to the forum! I am soooo glad that MAGrl jumped in to give us the name of the other recent member we had who was in your situation (lots of O-Bands and "negative" MRI) but who was given the diagnosis of MS despite the lack of MRI signs.
First, I see NO reason to do another LP. You clearly have "beaucoup" O-Bands and repeating the LP is not going to make them go away. From my reading, if this is MS, the O-Bands tend to accumulate with time and persist for the life of the individual. Their presence clearly shouts that you are having an immune reaction in the CNS that is not occurring in the rest of the body. I am assuming that your report of 8 - 12 O-Bands just indicates the O-Bands that are "unique" in the CSF and do not also appear in the blood. That is typically how they are reported.
I would venture to say that the majority of neurologists and even MS Specialists, will not accept that MS can be diagnosed in the face of a negative MRI. That is pretty much what we see here. However, and this is a big HOWEVER, there are some that will actually follow the McDonald Criteria and accept that a certain number of patients (statistically about 5%) do not have T2 hyperintense lesions. The National MS Society accepts this, and there is data in the studies that support it. The neuro that will go out on a limb and make the diagnosis, tends to be smart, self confident and willing to think broadly.
In order to make this diagnosis in the face of a negative MRI, the neuro must truly do a heroic search for other causes of your symptoms. Lyme Disease should be ruled out with multiple Western Blots done at different good labs. A thorough history and physical needs to be done to glean any sign of other diseases, such as checking for dry eyes and mouth which might indicate Sjogren's Syndrome. The blood should be checked for any antibodies to the clotting proteins. The neuro should know the drill.
After that, the history of the symptoms you have should be examined for the pattern of Relapse and Remission. This may give all the clues that are needed. If there is a clear history of at least two attacks and there is clear evidence on neuro exam of two abnormalities (such as hyperactive reflexes and eye movement deficits), then there is enough data (after exclusion of the mimics) to make the diagnosis of MS.
You should read the Health Page called "Diagnosing MS - The McDonald Criteria (revised 2005)." You will see that the diagnosis can be made just on the basis of the history of attacks and the different clinical problems seen on the exam. This is how the diagnosis was made before the arrival of MRI. The LP results add additional evidence. This Health Page is very long, but I think it is worthwhile to see what I mean.
There is no need for all the neuros to agree on the diagnosis. It is probably more ressuring if they do, but we often see more dismissing the diagnosis than those accepting it when everything is not perfectly "characteristic." Have the doctors that stated it is not MS had any ideas as to what it might be then? Or were they comfortable in saying that your suffering was not MS - so go away? If they gave no alternative explanations, then I find that pretty irresponsible.
MS Specialists do not have to have ANY certicfication or additional training to call themselves specialists. They can just do it. Heck, "I" could probably do it, if I still had a medical license. (I gave it up because I couldn't justify the expense) I fear that many MS Specialist work in a medically "self-fulfilling prophecy." They only diagnose people who have the perfect history, neuro exam, and MRIs. Thus, those are the only patients they see. Thus, they come to believe that ALL true MS patients are like that. Thus, atypical cases do not have MS.
If I were in your shoes, I would go to the neuro that feels this is MS. Tell him you have learned a little about it and ask if he would walk you through the things that made up his mind. If he can tell you how he did it and it makes sense, then let him give you a DMD. Also, ask if he is sure that he and the others, have adequately ruled out the mimics. This disease is better treated earlier than later. The longer you go without treatment are months and years that can't be regained if there is an accumulation of disability.
We have about 18 years of follow up with the DMDs. During that time we have not found ANY new problems to watch out for, no sign of nasty, med-related boogie men to be wary of (like the increased risk of secondary cancers after being treated for the primary cancer). So, the main concern is the expense and the side effects we know about in someone who "might" not have MS.
Those are my first thoughts. I really would like you to read the HP on the McDonald Criteria.
Thank you so much for your insightful remarks on my case. It is so nice to have a knowledgable person give me clear cut direction as I have been mired in this mess for so long it is hard to see straight.
The MS clinic at uscs tried to tell me that it was a mistake at the lab that caused the bands in my csf that were not found in the blood draw that was done simultainesly. He insisted that I have the sample sent to his lab who was different. When my hospital called them to get the info of where to send it..it was the same place that it was sent to the other two times!
My last visit to ucsf ms clinic was a joke. They set me up with another doc (as I requested because I no longer trusted the first one) who was a opthamolgist when I have had no sx of eye probs. It was a waste of my time and $$ as we have to stay the night in the big city as I am too tired to make the almost 3 hour trip home. I have gotten no where with this clinic.
So, I am up for repeating the brain scan but not the lumbar puncture. I think I will go back to the one neuro that speaks to me like a human being..she is not a ms speciliast but a good neuro. I was sent to her from a doctor how is a friend who really likes what she does. I hate the drive but I can always get someone to go with me.
As far as starting the medications...I have been leary because no one could give me a clear dx and I hate to put all those meds in me with everyhting I already take if I don't need to. The progression has been slow but looking back I am definately more disabled than I was before..it is sneaky and catches me off guard. Sometimes I just sit in a chair all day and sometimes I feel ok and can do things. I think I will start keeping a log.
Can you tell me more about what the other results of a lumbar puncture should be as far as protein etc to qualify as ms? Maybe that is why the doctor wants to retest that?
Thank you again for your informative post and interest in my case!
Hi there...we haven't spoken but welcome...my name is Rena and I have been a member for almost a year now. In your last post you mention keeping a log of symptoms. This is VERY important! We have a little information on how to do a timeline in the Health Pages and I think this is something that you should do in your own best interest. I realize that it can be difficult to remember what symptoms you had when but if you do a timeline and keep it updated regularly, you will have a fairly concise record of your symptoms not only to give to any doctor that you see but also for your own information. As someone with an MS diagnosis but being denied the DMD's I realize how difficult it can be to remember all the symptoms I have when sitting in front of the physician and this way the information is in my file and they also can't come back and say that they didn't know something because we didn't tell them. It is all there in black and white and it is something you should do soon. If you have any questions about it or need some help, let us know...one of us is always able to offer a helping hand and it is important that you do this ok?
I am so happy to see your wish has been fulfilled and Quix answered your post. Quite the healer with words she is, even if she doesn't have a current medical license. She has now armed you with the knowledge you needed to finish this once and for all. I know you will stay in touch.
I am fairly new too, welcome to this great site. I think you should return to your original Neuro. Good ones are hard to find, and maybe she would consider starting you on some meds. From what I have read here and from my neuro it seems that O bands are the "slam dunk" that proves MS.
I live in northern California, are you up state or So Cal?
Sally, I'm so sorry that I gave the idea that Oligoclonal Bands make the diagnosis of MS certain. They are not diagnostic of MS, merely suggestive of it. Several of the MS mimics can also present with multiple O-Bands, like Sjogren's Syndrome, HIV, Lyme Disease, and NeuroSarcoidosis.
So that's why I told Cynde that she needs to ask the neuro that feels this is MS if all of the appropriate mimics have been ruled out.
After a virus that invades the CNS, many normal, healthy people will have one O-Band that usually eventually goes away. Anyone ill with meningitis or encephalitis can also have one.
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