Thank you, much appreciated. I know where to find you guys. I appreciate the support. :)
Hey you,
Thanks for letting us know what eventually happened, acceptance can be one of the more the difficult hurdles, but don't beat your self up if you still struggle sometimes. Maintaining a positive attitude is great to hear, though if you're ever in need of a good chat......you know where to find us!
Hugs...........JJ
Good Evening Everybody,
Thank you to everyone who commented on my post back in December, I appreciated all of the feedback and think you guys have an awesome MS community. :)
I just wanted to keep everyone updated on my status. I did get the spinal tap in January, it took about 3 weeks to get my results (It went to 2 different labs) and I did test positive for these o-bands. I was not able to hear how many bands there were but my neurologist wanted me to start taking Plegridy. I actually got my first shipment of it today. The company that makes the drug (Biogen) is providing me with a nurse, free of charge (if you can call it that- the medication is expensive) to come meet up with me at my home and help coach me on the first injection. The nurse I got a call from about the spinal tap and starting plegridy said that the neurologist was diagnosing me with MS.
I still feel like all of this is a dream in a way and can't believe I am actually being diagnosed. I am being positive though and am grateful that the disease was caught early and I am able to be treated. I have read some great forums from people who have started Plegridy and am looking forward to starting it.
Sherbz,
I am at the other end of the scale - dx at 51 (52 for all intents and purposes), just a month ago in fact. I had a rousing bout of sudden motor symptoms that slowly resolved over about 3 weeks, during which I was very fortunate (although frustrated) at the time to get in with a neuro who took an aggressive approach to diagnosing me. I had what felt like a zillion (4) MRI's, umpteen blood tests, and the LP. The MRI found 3 enhancing lesions, the blood work ruled out a bunch of other stuff, and the LP found 8 unmatched O-bands. Pretty classic. But like you, I kind of wondered if the doc was correct in his dx - seeing that I only had one set of lesions all concurrent, and only in my brain. Surely NOT MS this quick...maybe a CIS instead? PLEASE??
But as others here pointed out to me when I first posted (and thank you all again) a MS dx is not just about tests, but about episodes in the past, ones that you likely chalked up to something else, like I did. I had enough suspicious neurological incidents in the last 10-12 years, that he put me in the MS category purt durn quick. But I still questioned....until... (and this is VERY recent, like last week) I had a baseline MRI of my head before starting Tecfidera (it had been 2 months since my last one and he said we needed one as a baseline, just in case) and lo and behold! 2 new lesions! Yay me! He even pretty much told me he thought I'd probably had this for a long time based on my past. So I have gathered now from personal experience, that factoring in your history is where the "art" of doctoring comes in. Sometimes the dx is correct even when the tests don't meet a strict criteria, like yours may not (although it sounds like you do meet a threshold already, according to our resident experts), and mine did not.
So, he did make a good call, and you doctor is probably doing the same thing.
Oh, and I fretted massively about the LP, and while it was un-fun, I did not suffer the tortures of the damned like I was afraid I would. I would however, NOT let a doc do it in the office. Insist they do it in a hospital setting where they can use an x-ray to "mark the spot" and not have to do it strictly by anatomical markers. I want that punch to be a one time shot, no misses, you know.
Best of luck to you! This is a crappy club to belong to, but it has some great people here to compensate at least. ;-)
Thanks Corriel! I appreciate your story. I am going to do the LP, finding out whether or not I have any of these O-bands will definitely ease my conscious. No bands will kind of keep in the same boat but positive bands will make me question this diagnosis much less. I hope I also don't get a bad reaction to the LP like you. I will keep the thread posted on what happens. I was hesitant about posting originally, but everyone has turned out to be such a great help. You are all very knowledgeable. Thank you for your input.
Thank you Kyle, I do not really match much with the clinical signs.. I'm glad the LP worked out good for your though. It does make me feel less nervous.
Thank you, I am sorry that you and I are in the same boat! 3 years is a long time. My current neurologist emphasizes that if anything happens in the next 4 months before my third MRI I need to call her asap. I tried telling her I think the odds of anything happening are very doubtful. I'm sure I will also be looking at many years before another symptom.. if I have MS that is.. Thanks!
Thank you again for your feedback. You sound very knowledgeable about MS! I appreciate your sharing of the things you have learned about the disease. The disease modifying drugs do sound very hopeful for me, if I am diagnosed with MS.
Hi there, my story is not similar to yours but when I am very tired my cognitive symptoms run amok. In addition to other issues I notice some dyslexia and difficulty prioritizing even spelling issues and I was proud of my writing skills not too long ago.
My presenting symptom for my diagnosis is relatively unheard of for MS so my neuro did not think MS was very likely. The visual field deficits I had were typical of a stroke which was my original dx.
That was ruled out after an MRI and my neuro exam was fine. I was given the choice of waiting another year and get another MRI or do a spinal tap. I opted to do the tap.
I was lucky that the tap went well and the headache afterwards was bearable.
The results showed "multiple" o-bands that were not found in my blood too so after 6 months I had my dx.
If you are feeling comfortable to do the tap, then I absolutely would. Even if it is inconclusive you won't wonder "what if...".
If it is positive then you will know for sure what is going on.
Good luck and please keep us posted,
Corrie
Hi Sherbz -
The single most important part of the MS diagnosis is the clinical exam. Since there is no "smoking gun" test for MS, it's up to the neurologist to make a diagnosis. MRI's, LP's and all other testing are meant to support clinical exam findings.
As to LP's, some have trouble with them and others do not. I've had 3 and have never had any ill effects.
Kyle
Hi Sherbz,
I'm in a similar position to you and it's very difficult. I was diagnosed with MS very quickly and I requested a second opinion. The second MS neurologist said possible MS. Like you I asked for a LP. No O-bands but protein. I try to remember that for many people a firm diagnosis can take years and I may just have to give it more time (3 years so far). Good luck to you.
(*_*) Your very welcome
You're a young women of only 24 and it sounds like you probably haven't had MS for very long, so it's quite possible that you could have a negative LP in the early stages of MS and develop the Obands along the way....
Benign MS is the most controversial diagnosis (dx), i suspect today it's almost obsolete, definitely rarer than hens teeth because it can only be confirmed via an autopsy and to be benign, the MSer has to have a life long medical history, with absolutely 'zero' MS associated symptoms (sx's) and or clinical signs.
The disease modifying drug (DMD) your neurologist prescribed, is actually what has changed MS from what it use to be.......decades of research history has proven DMD's reduce the number of relapses, effectively slow it down and therefore reduce an MSers disability levels. Basically DMD's are proactive and along with the various symptom treatments, appropriate exercise, MS education etc it all enables people dx with MS today, to live relatively normal (ish) life styles.
Today MS doesn't have the same out come as it once did, MSers are more educated, and definitely better medically equipped to manage their MS, they get their degree, have careers, babies etc etc and live their dreams.........
Cheers...........JJ
Yikes, I just followed the (Community) Leader!
Mmm, crabcakes from Faidley's, in Lexington Market. I'm sorry your travel plans got ditched, but hope you still have the crabcakes! Long ago my dad would go there every Christmas Eve and buy a huge carton of oysters, which R in season. He'd stop at my great aunt's on the way home and open a dozen or two for her (he was the best oyster shucker ever, and used a golf glove to keep the self-stabbing possibilities at bay). Then he'd bring the rest to our house, where those who liked such things would dig in.
As for my plans this holiday, I'll be driving a bit upstate from you for a visit with my sister and assorted other rels. We'll do a standing rib roast as part of a gourmet Christmas feast. We may have a rainy Christmas, but that's better than a nightmare drive in snow and fog thru the Poconos.
Merry Christmas to all!
ess
Ooops! That was meant for another thread :-)
We're now working on Plan C.
Plan A was a river cruise down the Danube, including Christmas Eve in Vienna with the Vienna Boys Choir. This was scratched when one of my cats decided to get sic and require abdominal surgery. He survived, the trip didn't.
Plan B was a quiet Christmas at home with my girlfriend and her brother, enjoying the crabcakes my sister sent up from Faidley's in Baltimore. All hope for this was abandonded when the timetable for the arrival of GF's second grandson was moved up 3 weeks. She got on a plane to California this morning,
Plan C is still being formulated :-)
Merry Christmas!
Kyle
Thank you JJ,
I really appreciate your feedback. Hugs to you too! Thank you for sharing the updated Mcdonald diagnostic criteria for MS. I suppose with MRI evidence I have already met the critera. I keep hearing that the LP is very invasive, I guess I am a little bit naive about it since I am requesting to have it done. I will feel much better about being diagnosed though if I have do have these o bands. I will keep in mind though that not having them does not necessarily mean anything. I can only pray that if I do have MS it is benign. Thank you for your help.
Hi and welcome to our little MS community,
It's not uncommon to question being diagnosed (dx), I don't think it's at all surprising considering for you, MS was probably shockingly unexpected! ***HUGS***
[Mild Scoliosis and being dyslexic is unrelated and shouldn't in any way negatively effect your neuro's opinion on what you are additionally dealing with now.]
According to the latest revised Mcdonald diagnostic criteria for MS, if the MRI already has enough MRI lesion evidence (which your MRI appears to have) and or clinical evidence of a prior attack then diagnostically, no additional evidence is actually necessary to meet the criteria. Unlike the MRI, the LP is seen as a more invasive procedure because the needle is removing cerebrospinal fluid (CSF) and like most invasive procedures it too has 'minimal' risks attached.
A positive LP with 2+ Obands, may possibly help you feel more confident in the dx but you need to keep in mind, that if your LP doesn't have enough or any Obands, it doesn't mean you can't have MS because there are 10's of thousands of dx MSers across the world with out a positive LP (approx 10%), imho unless the LP is going to provide you with additional diagnostic evidence, an LP is more than likely unnecessary for you, if your neuro is confident you have MS with the evidence MRI, clinical and medical history you have......
Hugs..........JJ
I have no O bands and have MS. spinal lesions are very hard to see and often overlooked. You have to have 2 events separated by time and space (say, for example, one MRI showing 2 lesions and 3 yrs later another MRI showing one of those gone and 3 more in other areas). Google McDonald Criteria, which is what neurologists go by.
You don't take two different medications by injection for MS, only one. There are several to choose from plus oral meds and infusions. I take Tysabri which is an infusion only once every 28 days.
Many other things have to be ruled out by blood tests, as there are diseases that mimic MS. Perhaps another MS neurologist for another opinion? I'm not sure that the facial numbness would be caused by neck and upper back lesions.
Thank you for responding Alex. My neurological exam reflexes always check out good. I appreciate your feedback on the spinal tap and the o bands. I feel better about the tests considering an o band will always be there. I know they say not all people with MS have abnormal spinal taps but according to my neurologist nearly 88% of all people diagnosed with MS do have these o bands. I'd like to think I'm not that lucky to be the other 12% and am going to take having no o bands as a good sign. Also, I am sorry about the symptoms that you suffer. Has your provider put you on any injections? What are your feelings about them if so?
Thanks
I was not diagnosed until I was 44 but I had had MS since childhood. I have permanent double vision but instead of seeing double I switch eye to eye. I have headaches. I have trouble with words. I have trouble following directions like in school on tests. I have numbness and pain. I also walk with a weird gait.
I understand about your job. Many people with MS can work for most of their adult life. If you have MS symptoms come and go so you may need help at times at work.
Alex