Hello...just wondering about this....in 2000 I was diagnosed with a "hidden"B12 deficiency..my B12 level was 278(normal>200-1100),but my methymalonic acid level was sky high and doctor said I needed B12 shots...I was given B12 shots monthly for just over one year and it was suggested that I get them 3-4 times a year so I wouldn't get that low again.I went 5 years without any more shots(due to no insurance).Then in Sept.2006 I started feeling really weak,so I went thru a whole bunch of drs. that couldn't find anything wrong with me(my B12 was checked and it was 222)...finally I saw a neirologist at a university who called my MD and TOLD him I needed B12 shots.Also I was found to have chiari malformation I on my MRI(which was in Dec.2006),but I didn't have it on my 1999 MRI.It's a 6mm herniation and the neurologist said not to worry about it.So in Jan.2007 is when I saw the neurologist and I started getting B12 shots monthly at my MD's office(17 shots I've had so far).I feel much better in some ways,but not in others.So I don't have any brain lesions(at least none that show),but I have a host of symptoms and they are making me wonder if I have MS now that my B12 level is more stable and at a good level.My symptoms went away in 2002,but came back so much worse in 2006.My symptoms are almost always constant,but get even worse when I am in hot temperatures,also I am in post menopause and when I have hotflashes I actually get disabled...everyone says that's not related to menopause(my MD seems to know nothing!)...here are my symptoms:weakness in hands,arms,legs,feet...balance problems,twitching in ankles/feet,bruising where I was itching mosquito bites,occasional slurred speech,constant fatigue,muscle spasms,blurred vision(also have had focal seizures),numbness(sometimes in a leg or an arm...),uncoordinated(like if I bend over at the sink to wash my hands I feel like somethings around my waist and feel like my arms aren't working right),heat intolerance,joint pain/stiffness...I do get some pin'n needles,but it was worse when my B12 was lower,face pain sometimes(I try not to chew any food hard),back pain,electric shock type of pain(down neck thru spine),I have a hard time holding change in my hands(?)....I think that's about all of them.I can't understand what happened to me...I am planning on seeing my old neurologist(he just got back in my insurance plan),but I thought maybe someone here who has MS could tell me whether my symptoms sound like possible MS symptoms.I know B12 deficiency has similar symptoms,but my B12 level is okay now(I'm still getting shots,but I have all these symptoms still).I feel like I'm sooo disabled...I hate this,but I deal with it everyday and am trying really hard to function in a non-functioning body....thank you~Scout
Sout. Wow. first, I want to tell you that Im very confused. Your post was alittle tough to follow. Maybe you could break it down and try again? We would very much like to help you make sense of this!
Lets go back to the beginning, the b12 deficiency that you mention- could and would cause almost all of the symptoms that you mentioned. And, you said you have now had 17 shots and are feeling somewhat better- thats good news. Have you had your blood work done recently to see if the shots have raised your levels to a higher, more normal level? Yours were very low...
Then, you mentioned that you were dx with Chiari? Thats alot more serious...Chiari mimics MS in many, many ways...however one of the signs that I always hear about with Chiari is the optical Neuritis, which you didnt mention- have you ever had eye issues? But, you also said (I think) that 3 years later, the chiari was gone.....that makes absolutely no sense at all to ME. Could you further explain that?
You asked about MS. MS is not easily recognized or diagnosed. However, the starting point for both MS or Chiari would be regular MRIs, both of the spine and brain and both with and without contrast. When I say regularly, I mean every 6 months! Both of these diseases do NOT come and go; although what doesnt show up today, could show up next week on imaging tests (mri's). So thats why its important to have them regularly.
To me, it sounds like you have not had regular medical care- that it has been sporadic. Forgive me if Im wrong, Im trying to read your post to get this informtion. If that is the case, be it due to not having had insurance, or whatever, the time has come to find a GOOD neurologist. Forget the regular MD primary care doc when it comes to the neurological symtoms. A good primary should be referring you to a good neuro- and watching what is going on. for some of us, our primary doc is the one who coordinates all of our health care. In my case- i gave up on my primary and see him for soar throats and nothing more! my Neuro is in charge of anything blood work, medicine and neurological at all times! Nevertheless, with your list of symptoms it could go either way.....either its your b12 deficiency causing these problems, or there are Chiara or MS issues which need to be addressed. Also, have you been tested for Lyme, Lupus, and other issues which can also be confused with MS?
Please let us know what exactly they have tested you for, tell us more about why Chiari was suspected and then ruled out and when your last MRI was...if it was more than a year ago- start there! With a good neuro! A regular primary should only be invovled to refer you to specialists at this point...
Hi, scout. First of all, in answer to your question, yes, it is entirely possible to have both a B-12 deficiency AND MS. I've seen many people who have both. The other thing is that not only can a B-12 deficiency mimic MS sx, so can Chiari Malformation! I never even HEARD of CM before I saw two people who posted on the MS board for a long time go on to be dxed with it. Besides posting here, I think it would be a good idea for you to post something on the Brain and Nervous System board. One of the women I'm talking about spends most of her time there now and she might be able to help -- she says that CM is VERY under-dxed. In any event, I think you're doing the right thing by seeing a neurologist and I hope that a new MRI will give you some answers. Please kee us posted.
Dxed RRMS April '07
Not on DMDs
Beary- not entirely sure, and we both know who would know this BETTER than either of us, we will have to find out. But, I do know that before my dx and right afterwards, when I was having ON problems, this was something both my Neuro and MS specialist brought up several times. Chiari was not ruled out on me until more testing was done...
Because it was ruled out, I never really persued more info on it..I wanted to bring it up to the poster because she hadnt mentioned any eye problems and wondered if it was something she just hadnt thought to mention, or really had not experienced.
This was kind of a "just in case" type symtom to mention to her...
But your right to send her to the other board for more info...good thinking!
Hope you are well..
Well, I did research CM after learning about Cindy's case and don't remember seeing ON at all in the listings for sx anywhere I visited. That's actually why I think she made a point of mentioning to us that it CAN happen. I saw visual disturbances but just in general terms. So I do believe that while it can occur, it's not a "hallmark" symptom.
She's also made a point of noting that even "borderline" cases of CM can cause major problems -- cases are dismissed that should NOT be disregarded.
Dxed RRMS April '07
Not on DMDs
Hi MSNik & Bearygood...thanks so much for posting so fast!So sorry for the complicated post,but it's hard for me to put it all down.Okay first I'll explain the Chiari...in 1999 I had an MRI....there was NO Chiari then,but in 2006 was my next MRI and they said I had a 6mm herniation(I've been told you are usually born with Chiari?Makes NO sense to me!).The neuro I saw after the MRI in 2006 said that there was no need for surgery(the one where they do the decompression;take out part of the skull and put in a patch....)...he said he thought my symptoms were related to my low B12 level(was 222) and then he called my MD and told him to give me a monthly shot "til my level was better.Okay so I've been getting the shots,but now my MD says he wants to give me them every two months,yes he checks my level every 4 months and the last two times it was 500 which is great,but I don't feel great!The only symptoms that went away were the pins'n needles thing in my fingers/toes and the tinnitus got better,but I still have it sometimes.I was told by a different neuro that it might take a while for the B12 to help...so that is why I'm confused that I still have so many symptoms when my B12 level is good now(makes No sense to me!).I have had complete neuro exams...in 1999 when I was having weakness and focal seizures I saw two neuros(the second one was an x-cellent neuro;he is the one I'm going to be seeing again),back then he did an EMG test and it was normal amd my MRI just showed a slight bulging disc in cervical spine so I had therapy for that for 6 weeks and it was fine.During that time I was getting B12 shots from my hematologist that diagnose me with the "hidden" B12 deficiency,so my neuro said he didn't have an answer to why I was having the focal seizures(I would get an "aura":blurry spots in my vision and then see flashinglights for like 25 minutes or so)no pain,but hesaid it was probably an occular migraine.I went to an eye specialist who confirmed that as a retinol migraine.So then I finished getting B12 shots aftyer about a year and like I said I didn't get any more for 5 years(no ins.).I never really felt healthy after all of that,but I was okay.So then in Sept.'06 I started getting weakness in my arms again,so I figured my B12 was getting low.Our insuranceis really not good...the doctors in the plan are really awful to say the least.I went to the doctor constantly...MDs and neuros...my B12 WAS low(2220,but they said it was "in normal range",the MRI then showed the Chiari and they said"go see a university neuro"...so I did and here I am now...STILL having symptoms that really are disabling.I know the Chiari thing is something even neuros disagree on,but how could I not have it in 1999,but have it now?CRAZY!!!!I have a friend who had the decompression surgery and it was 12 yrs. ago and thery want her to have it again...the neuro I saw said the surgery should only be done if you have really bad constant headaches...which I do not have...I get a headache in the back of my head that is really bad,but only like once a month.Why I'm thinking I have MS is because my B12 is good now,but I still have so many symptoms.I had only a few symptoms back in 1999,but this time there are so many and every MD that I saw was SURE itwas MS,but were thrown off,because of no brain lesions on my MRI.I know I need to see the neuro and I am,but I'm scared and I just feel better having you guys to talk to about my health issues before I go in to see the dr.I will be okay somedays and then I'll do some things and get soooo disabled...like the other week I was getting some things ready to give my daughter-in-law for her yard sale and just handling so many little objects and putting price stickers on them was hard...my hands/arms got so weak...and it was hard to walk,but I do things still,because I hate just sitting around..I love to be around people and do things,but it's really hard.The main thing that bothers me is when I feel warm/hot it brings on my symptoms.Sometimes I'll have a numb leg or arm,but it only lasts for a day,but the weakness is the worst and it seems like it's chronic and the twitching is annoying...it feels like muscle fatigue.Now this year I've noticed I get bruises from itching mosquito bites....I was tested for lupus in 1999>negative and that test for a muscle disease,but that was negative also.Sometimes it looks like colors will kind of stream;like I'll look away from the tv or computer and then the color will hang on a bit?I'm just "confused" with all of this and all the women I know who are going thru peri or post menopause don't have the symptoms that I have.Also I have two people in my family with MS,but am not able to ask them about this,because they don't associate with the family at all.Thanks much again....I truly am most grateful for any advice from you guys~Scout
One of the two women who posted here thinking they might have MS who went on to get a CM dx absolutely had sx that resembled Optic Neuritis (that's the correct name for it) but it was NOT that. The impression I'm under is that more commonly eye sx can appear as ON than actually being ON but as Cindy states (and I would totally believe Cindy!) it CAN happen. I also do know that Chiari is not always congenital. It can be caused by many things. I really recommend you go over to the other board. Cindy will be able to answer some of your questions and I know that you will just learn by reading some of her posts! She's talked about borderline cases there. (Search for cindys601.) But please keep us posted too!
Good luck! Oh, and no problem about the long posts but pretty please, would you break it up into paragraphs so it's easier to read?
Dxed RRMS April '07
Not on DMDs
Gotta agree with Bearygood. Your posts are VERY hard to follow because they run on and on...but i am trying to get the gist of it and do apprecaite you taking the time to let us know what you are dealing with!
So, here we are. What Beary said, about going to the other board might be helpful to you...
And, seeing another Neuro and making sure you have BOTH a brain and spine MRI would be necessary! You mention having had a brain MRI, but never Spinal- MS can be found there, too..which also might be causing some of your problems.
Go see the 'good" neuro and have a very long chat with him. What you are going thru does ring of MS symtoms, but also of Chiari and also of B12 deficiency..its so hard to pinpoint..you absolutely have to make the committment to see a GOOD NEURO and see him regularly to get to the root of this..
Wishing you well.
I did get a chance to respond to scout and hopefully can help answer some question but I wanted to pop on here and comment about the ON. What I've read about the eye conditions related to the Chiari is the swelling causes the optic nerve to become inflamed. If left untreated, the pressure can cause permanent damage to the eyes. But I haven't heard anyone actually use the term ON in relation to Chiari so maybe its closely related but not quite the same.
If my memory serves me, I think I remember on here that ON will go away on its own but steroids can be used to treat it. So if left untreated, can it cause permanent damage? I'm a bit perplexed if these 2 are one in the same or similiar. But I haven't research ON myself. I know Nikki and bearygood, you both have experience with this and research so wonderfully that you both would be able to tell the differance. Is ON just an inflamation of the optic nerve or is it more involved than that? Knowledge is golden so I'm always willing to learn!!
I hope everone is doing well here and hopefully are having more sunshine than we're having here. Its been so rainy and gloomy, Wishing everyone some sunshine!!
Hello, dear friend! At the end of the day there's no way for us to know for suree if this is just semantics (or not) but the ON we talk about is caused by a lesion on the optic nerve, which will appear in an orbital MRI. I know that there are other things that can cause the optic nerve to become inflamed as well and even other areas of the eye that become inflamed can cause visual impairment. I did look up the search terms CM and ON together and didn't find anything -- I'm tending to believe that maybe it's more "ON-like" than what we actually refer to as ON. In any event, I did know that it wasn't a hallmark symptom; that CM couldn't be dismissed in the absence of visual impairment.
Recovery from ON will often be the same with or without steroids (except more slowly without) but the key to determining any type of prognosis is the health of the actual nerve itself. You know, I think I remember Kelli having horrible eye problems and it seemed like ON. I thought she just had bad doctors because making an ON dx should really not be very hard! We have another poster here (almost 100% certain with something other than MS) whose sx were ON-like as well but it was finally determined that the inflammation is not ON and probably coming from another area of her eye, not the optic nerve.
Dxed RRMS April '07
Not on DMDs
Hi Cindy and Bearygood. Although i cannot dispute that what Bearygood is saying, my Neuro-opthamologist has a slightly different take on what he termed ON with regard to my case.
When I first had the color blindness and the excruitating pain, I went to my regular opthamologist, who was able to see behind my eye and determine that the optic nerve was inflamed...he then sent me to his friend, the Neuro-Opthamologist (and thank goodness they ARE friends, it would have taken me weeks to get in to see him!) Anyway, he did an orbitol MRI, and there was NO lesion on my optic nerve...he also did extensive testing- everything from the visual acuity test to the basic Ophthalmoscopy and visual evoked potential. I also had another test done, whose name is letters, and is currently escaping me (sorry- rough MS week for me)...anyway, even without the lesion, I was told it was a bad case of ON.
I choose to do IVSM for it and within 24 hours my color awareness was better, within 3 days, completely restored. Also in about 3 days, the pain was gone.
7 months later- the entire thing returned, but not as severely....I choose NOT to do steroids this time and allowed it to "heal" on its own. Im not sure that was the best idea because it took the better part of a month for the pain to stop and to this day, especially when Im overheated and having other, more common MS symptoms, my eyes hurt and movement, especially to the right, cause me blinding pain accompanied by headaches. I have returned to him every 6 months for a checkup, since this last occurance and he assures me that there is no permanent damage, however he agrees that the pain is residual and I may always have it to some extent.
one of the biggest problems for me has been that I no longer have a comfort level of being able to wear contact lenses all day> I used to wear them for 12+ hours with no problem..now, im back to wearing my glasses almost all the time, and my contacts for "special occasions". Only recently did I make it thru an 8 hour day with my contacts on...and came home and regretted it. As soon as I removed them,the pain was there and stayed until the next morning.
So thats my story- whether its a matter of opinion or not, it was dx as ON and treated as ON..
As for the Chiari and ON; Cindy I would never begin to second guess your expertise, however when I was first being looked at for what turned out to be my MS experience, I had already had the first bout of ON...the Neurologist was primarily concerned with ruling out Chiari. Why, ill never know for sure- at that time I was no more familiar with Chiari then MS...but as the tests unfolded, specifically the brain MRI (showing over 50 lesions) along with the rest of the symptoms which became clearer in my history - things like heat sensitivity, falling down the stairs, tripping quite a bit and the numbness in my fingers/hand) the diagnosis of MS was assured and Chiari was never again mentioned. Once I had my LP and got those results, along with having ruled out Lyme (yes, Bearygood at Igenex) and Lupus and whatever else they ruled out- and I saw a MS Specialist at a University hospital for confirmation, my MS dx was confirmed. The whole thing took me less than 2 weeks! And, really, the extra 10 days were waiting for the LP results, at the time they did my LP they were 99% sure of the MS....
Some call that lucky, right? I guess in so many ways, having a quick dx is lucky, but it didnt give me much time to get used to the idea! I went from 0 to 100 almost overnight!
Anyway, again, absolutely no problem with agreeing with either of you, but my experience was slightly different.
and, cindy- yes, you can go either way, treat with steroids or allow it to heal on its own, I completely agree with Bearygood on what she wrote on that subject.
hey girl- I have to pop into your board one of these days to keep up with you but I wanted you to know its GREAT to hear you are around and doing well.
I have tried researching ON myself in the past but didn't find much useful information. But with what you explained as a legion on the optic nerve, then the 2 must be different.
With Chiari, there is crowding of the brain which puts pressure on the nerves in the head. The pressure is the damaging factor. I have actually been concidering seeking out a neuro optometrist myself because my vision has gotton so bad the last few months. Its scary to hear that if not treated, it can cause permanent damage. So better to be safe than sorry and get it checked out. I haven't had an eye exam since I was in my eary 20's so its probobly not a bad idea anyway.
But i'm sure that in either case, the optic nerve is being affected so whether MS or chiari, there probobly similiar in how it presents itself. If I turn my eyes to see something in my side view, I feel pressure in my eyes and my newest(most uncomfortable) feeling is my world starts to spin. I have developed severe vertigo from this. Kind of like when we were kids and spin around and when you stop, the room is spinning. I get this even lying down if I look quickly in a differant direction. So I wonder if its eye related?