I had today App with Neurologist which my eye MD made for me yesterday.
As you remember I was diagnosed yesterday with ON and my eye Dr got very concern since I am very symptomatic for MS.
My app with Neurologist was about one hour; she gave me a very good evaluation and asked million of questions regarding family history, my symptoms, etc.
I also had my MRI today, results will be tomorrow.
She told me that no need for spinal tab if MRI shows or doesn't show anything (in my case especially).
She said that 95% MS cases showed on MRI. If MRI is perfectly fine, most likely patient doesn't have MS, MRI is still the most accurate test to diagnose MS.
Also she said that people whose back was ever injured or operated on (mine was twice), had meningities, a real flu (not just a common cold or a virus), had Lyme desiase, and some other serious viruses/desiases - spinal liquid will never show a clear picture no matter what. It will not be an accurate test since spinal liquid gets affected by what I mentioned above, according to Neurologist.
So she said if MRI will show nothing to worry about, it means no other tests can be performed (except a lots of blood work for Lupus included just to be on safe side) since my spinal fluid is affected by 2 spinal fusions, that is why i can't be diagnosed by spinal tab.
Even though I got ON, does not mean I got MS too. She said about 70% of MS patients have ON also. I hope I will be in 30% left.
I am very symptomatic according to her, and not for anything but she would be very suprised if she will not see any changes on my MRI. She said that not many people have so many symptoms like I do who confirmed already having MS. She checked my signs by touching and "hitting" my skin and some joints with her "tools" but did not see any responds from my knees, wrists and ancles. I believe it calls motor function. It was suprising to her how do I walk and how do I put pressure on such weak legs and feet. My righ leg, hand, arm and foot is the worse she seen in years.
Well... thank you for letting me to vent. Will see next week what is going on.
I got some hope since she said that even so symptomatic I still have 30% not to be an MS patient. Good news, is in it?
I read on one website last night that many people get wrong diagnoses and years after non-needed treatments when they go for second opinion or by accident, they get the news - they have never had MS.
I asked her today how come this can happen. She said that it has to be a Neurologist who really specializes in MS to be able to diagnose a person with it; that unfortunatelly many people have been diagnosed with MS with perfectly fine MRI. She said it always causes suspesion on her part. Usually if she gets patients who come to her from other DRs and their diagnoses were made just on what patient complains about, but not what tests and evaluation show - she usually sends them to have another MRI and if comes out without any problems, she suggests to have a third opinion.
She said that non of her patients were ever prescribed any medicine if diagnoses of MS were not confirmed by MRI of their complete spine and where else lesions can be found.
Thank you again and I will keep you posted. I am not worry because I have and had many other health issues in my life much worse than MS, but just wonder; this diagnoses of ON scared me to tell you the truth
You sound very good and relieved! It could still be MS, but you'll know enough soon. I'm glad your doctor said your odds are good! Thanks for letting us know, and be sure to post the results of your MRI!
Avonex started 11/07,
Stopped 4/10 due to no insurance.
Diet, dear heart, what would I do without friend like you? You found me here too, ha?
Thank you all for your posts. I hope my Neurologist is good, I really don't know he, it was my first app with her. But as far as I saw so far - I did like her, she is very particular and very on money, you know what I mean...
I just a bit cofused reading many posts here; Based on what Dr told me yesterday diagnoses of MS is not clear if your MRI is fine. Meanwhile I met some people on this board whose MRI is fine but they still were diagnosed with MS. Very confusing to me...
What do you think about this? IS this just me who confused about this matter?
Hi Moldova. Are you familiar with the McDonald criteria? Please dont ask me to explain it, as it is incredibly lengthy and hard to put into laymans' terms..but I would suggest you read up on it, and try to make sense of it yourself. It is probably something your new Neuro can talk to you about as well...by the way, she sounds very competent, and the way you put into words about your post on your appt, very thorough.
Meanwhile, the reason I addres this is because there are some people who have clear MRIs but still wind up with a MS dx..not real common- but it does happen based on Spinal Taps as well as Nerve Conduction tests...and of course, symtoms. Most people will show lesions on their MRIs, but in rare cases, they just dont. Also, some docs arent very quick to MRI anything but the brain, both the Cspine an Lumbar, can have lesions as well....this is another reason why seeing a good MS specialist is sometimes important. If everything points towards MS (like in your case) sometimes a good MS specialist can both rule out or diagnos for sure...but Id have faith in your doctor, sounds like she is both competent and putting your best interests out there...keep us posted..and meanwhile...nice to have you joining us. Your posts are very informative and well written.
It's important to know that MS is sometimes difficult to diagnosis because although the disease might be there, the evidence is not. (I'm not certain that all MS specialists would agree with the statistics your neuro cited.) Disease activity is what causes the things to show up on the MRI (lesions) and they can take years to appear.
As for blood work, it should ALWAYS be done. There are a lot of conditions/diseases that can mimic MS symptoms and some, right down to the lesions. Even something as simple as a B-12 deficiency.
As for Optic Neuritis, it is not always MS but there is always a reason for it. However, it is not always evident, especially initially.
I look forward to hearing your MRI results and hope you're doing okay.
No I am not familiar with McDonald criteria. I tried to find it on web. but can't find any information on it.
Thank you so much to all for your posts and information you provided to me.
You all are so right about how hard to diagnose MS. More information I read on MS, more questions I have. I wish they would have one answer for everybody regarding MRI for example or something else... Why one good Dr thinks that you have MS even if your MRI did not show any leasions, but another good Neurologist feels if your MRI did not show anything , than you are OK... How fair is this? You may walk for years and suffer without even knowing that you are having MS? Just because they don't have one criteria for diagnoses?
Sorry I am being pain in a neck, but this is so new to me and I am having so much pain all over my body. I am taking strong PK because of my 2 failed lumbar fusions and nothing helps me with this severe pain: from neck to the feet and toes. All this numbness, pins and needles, nerve pain despite the fact that I am on Lurica... Meanwhile some people don't even know that they have MS because they don't have any pain - very interesting, is in it?
What would you do with all the symptoms I have which bring my life quality to a very poor level but your MRI would be normal and DR would say get your blood work done and if it will be OK, nothing much I can do. Would you still research? Who would you use? I mean what kind DR would you go and see? My right hand especially is so weak and shaky, my right leg same as well. I am only 52!
Moldova, you are not being a pain in the neck, but you do sound frustrated and scared. If you type in these three words MS Mcdonald criteria in the search engine above- youll find lots of info.
I wanted to tell you, I still dont know where you are located exactly- but I started out with bad cases of ON..the best Neuro-Opthamologist in this area is in Edison, at JFK Hospital, he is the director of NeuroOpthamology...his name is Michael Rosenberg, MD and if anyone can get a handle on whats going on with you- he can! Even though he is an hour from me, I still go to him every 6 months because of how much I appreciate what he did when I had the worst bout of ON...I have alot of faith in him and eye health....I have other docs in Central NJ if you are in need....both MS specialists as well as a great general Neuro who happens to have an excessive amount of MS patients in his practice, but also works closely with both a pain specialist and a Neuro Surgeon...
You mentioned Lyrica for nerve pain..didnt help me a lick. I was on Neurontin, Lyrica and several others...nothing helped me as far as the type of nerve pain I have...its mostly in my hand and fingers, and is incredibly painful...Ive had it for going on 2 years now and cannot find relief! I do not take pain killers, but will resort to Ambien to help me sleep when its really bad...next week, I am going to my wonderful Neuro to try Cortisone shots..possibly this will help? We dont know till we try, but im scared!
If I can help you find docs, please let me know.
Moldova, you are not being a pain at all. The questions you have are no different than the ones that WE have! Welcome to the mystery that is MS, the most interesting disease you'd never want to get.
Re: the McDonald criteria, you can find it on the NMSS website and in other places but make sure you look for the UPDATED 2005 criteria. This is still a guideline though -- to a large extent MS is pretty much considered a clinical diagnosis -- it is subject to interpretation and observation. Sometimes enough evidence will be there so every single doctor will agree but other times it is a little more subjective. That said, the McDonald criteria IS the accepted set of guidelines. Some doctors go strictly by that and others are more aggressive. Also, if an MRI does show something, sometimes it's not so obvious. Although MS lesions have specific characteristics like shape and location, those funky lesions don't always play by their own rule book! There are cases that present atypically.
In terms of normal tests, etc., I don't know what to tell you. I have seen people who pursue a dx and others who become exhausted, taking a "wait and see" approach and having MRIs every year or two. That is something you would have to discuss with your neurologist. Also, just so you know, utlimately an MS specialist is the best person to dx MS. Some specialists will see something as being clearly MS while a regular neurologist will not. It really depends.
Just hang in there and before anything else, let's see what the radiologist's report and your neuro say.
Bearygood, thank you so much for the information and your time you took to explain to me what I don't know yet. I think I have to look for MS Neuro. I am not sure my Neuro who I got by refferal from my eye MD is MS Doctor.
Nicky, I was reffered to DR Vicky Robb at Ocen Twsp and I was told she is an excellent Neuro, but I don't know much about her. She was very "invaisive" with her questions, her evaluation which I loved. I think in order for Doctors to know more about you, they have to know your history.
Who can you recommend as MS Neurologist? I learned on this board that it's better to go to MS Neuro, not just Neuro, correct?
Please, I can use any help from you - greately appreciated.
Hi neighbor! How did they find your ON? What were the symptoms?
In my city, there is no 'MS Neuro', but I had my neuro referred to me by another specialist, who suspected fully it would be MS based on my MRI results and history he knew, so he found the best neurologist to his knowledge for the job.
I'm very happy with my neurologist, who isn't an "MS Neuro" but he's very knowledgeable about MS, and that's his passion, treating those with MS specifically.
Who can you recommend as MS Neurologist? I learned on this board that it's better to go to MS Neuro, not just Neuro, correct?
IMHO, a neurologist is a good place to start as there are neurological conditions (and demyelinating diseases) other than MS. However, if it is determined to be or like be MS, I do think an MS specialist is the best bet. Also, another reason to see an MS specialist might be if the reasons for what's going on can't be determined but it very strongly seems like MS, in spite of there is not enough evidence for the neuro. I have seen people report that their neuros dismissed MS but then got a dx from an MS specialist.
I am speaking generally but Moldova, in your case, the ON really does add another aspect to this.
All this being said, there are some MS patients who feel very strongly about their regular neuro's ability to treat their disease. I do totally believe that there are very capable neuros around who can address and advise treatment for MS -- I just think it's a little more rare.
HI Moldova, sorry it took me so long to get back to you. Im having an MS day myself here....first, let me start by saying your Neuro who you saw, is probably a really good place to start. I use BOTH a regular Neuro and an MS specialist...I will say that having an MS specialist is very important, because I have MS, and its all they do. But, they also rule out MS..so if the time comes when you want a second opinion, yes I think its a good idea (no great idea) to get a second opinion from an MS specialist...however, IF you are comfortable with your doctor currently, and you feel that she is doing her job (and it does sound like at this point she is) then, you should stick with her, at least until she says yes or no...either way, you can take that info to an MS Specialist to get a second opinon.
That being said- Dr. Suhayl Dhib-Jalbut is one of the most reknowned MS docs on the East Coast..he is located at Robert Wood Medical Center (hospital) in New Brunswick. He is the chair of MS Neurology and has writtten zillions of articles about MS which are published constantly in the MS mags- esepecially for the NJ chapter. He is WONDERFUL as far as knowledge and keeping his patients informed on the latest and greatest developements, but bed side manner isnt his strong suit. His nurse, on the other hand, is fabulous, and I tend to talk to her at length when I am there...she also returns calls promptly and answers questions over the phone. Love her....I use Dr. Jalbut for my every 6 month appt, taking my MRIs to him for his opinon and so far, he and my regular Neuro have always been in the same court as far as wha they think...they think that Rebif is working for me, that Im stable, and that no new lesions are showing...everything, according to them, is good. My regular Neuro, is a participating doc in my insurance plan, and I use him for giving me MRI scripts, as well as my Rebif- he also manages most everything else. I love him, because he is the personable one- and local to my house- and also in my insurance. His name, for the record, is Mannish Viradia...
Now, the other doc I gave you in an earlier post- is a Neuro-Opthamologist...he only does Neurological Eye disorders..and I have to say, he is very thorough. My regular Opthamologist recommended him, and it wasnt easy to get an appt, so I keep making them for every 6 months just to stay current..but he does things that I didnt know you could test for. My case of ON was pretty severe 2 years ago, and he was the one who was able to help me thru it...this is dr. Rosenberg (michael) at JFK in Edison...again, another chief of his dept and probably one of the smartest and nicest docs I know.
Moldova, I actually work in a position where I cover 11 counties (including Ocean and Monmouth) in sales...im on the road all the time- and deal with only doctors and nurses. I also credential doctors for my company, so I know alot about their training and backgrounds...I really did pick the docs which I use based on this. I feel confident in giving out their names that they are very good at what they do...but its ALMOST as important to CONNECT and LIKE the doc who is treating you..so if you are happy with your current doc, stick with her, at least for now. Do yourself a favor, and get copies of films, reports and any tests you have done...keep them at home. Do not ever walk out of an MRI center without a copy of your films..and then, when you see the Neuro, ask for a copy of the report...should this be MS, youre going to need this stuff to compare every 6 months...and should you decide to get a second opinon, youll need it because you dont want to delay things, having to have them transferred from doc to doc, or hospital to hospital. Its really a good idea now, to start keeping copies of everything you can get your hands on.
You asked about my symtoms. I had ON just over 2 years ago. woke up one day and had blinding pain, and couldnt move my right eye from side to side without screaming. Went to see my Opthamologist who thought it was ON, but wanted me to see a specialist...he actually got me in to Dr. Rosenburg the first time within a week.....he put me thru tests like you wouldnt believe and actually put me on a round of IV steroids right then and there and made arrangements for me to continue getting the IV for another 4 days at home. He was great...I never even was told this was an MS thing, and had no idea to question MS at the time...my eyes did heal completely over the course of a few months, and I never missed another day of work over this...but the risidual pain is still there and now and then the optic nerve does swell again and I have been told "its back" several times (4) in the past 2 years, however, I choose not to treat it with anything, becuase it has never come back nearly as bad as it was the first time.
Meanwhile, 8 months later, I wake up with my left hand numb and tingling and hurting one day...thinking I slept on it wrong, I ignored it, and went to work. By the time 3 days had gone by, the pain was radiating up my left arm toward my heart and I couldnt stand it any longer. (I was 39 at the time). I went to see my GP (he took me immediately, probably thinking I was having a heart attack or stroke) and he DID send me to the hospital for tests...after ruling out Cardio issues, they decided I must have a pinched nerve. They sent me thru a CT scan. It was then, that the radiologist saw "something' on the CT scan he didnt like, and called in a Neuro to see the films. The Neuro came out to me and asked if I was willing to go thru an MRI right then and there...I was terrified..but I did it. I learned that same day, that they were 95% sure that it was MS. I have over 50 lesions on my brain (none on my spine). That same Neuro asked me to come see him in his office the next day for a full Neurological evaluation, and like yours, I felt it was very thorough and comprehensive...mind you, this is the first time Ive heard anything about MS and was terrified. But, I liked him.
The appt went well, and he told me when it was over he was still almost certain it was MS, but wanted to rule out other things..and a spinal tap as well as much blood work was in order. He also ordered evoked potentials, both on my hand and my eyes..those are called Visual Evoked Potentials. I spent about a week getting tested, including the LP- and also, at this time saw Dr. Jalbut, he is the "great" MS doctor in NJ...(my doctor got me in within a day, after suggesting I go see him)...from there, things progresed quickly..the Spinal Tap or Lumbar Puncture (same thing, whatever you want to call it) came back with no Obands, but also didnt show any signs of infection...rule that test out..however, I still have a numb, tingling, painful hand and fingers...
dr. Jalbut was the one who said, yes, he was right...definately MS..this was based on my evoked potentials, my history of having had ON, my lesions on my brain and my symptoms...my history revealed that yes indeed, I had heat sensitivity, Id been trying to figure out why when I got out of the shower I felt like melting and was all dizzy just the previous summer! I also had balance problems, had tripped and fallen down the stairs, was constantly tripping over what I thought was the carpet, or my own shoes...things started making sense for me...but again, Im only 39 and very active- working 40 plus hours a week, married with a daughter and 2 stepkids under the age of 16....all of this was terrifying! Id never been sick a day in my life..
So, Rebif was the drug of choice. I really love it and after the intial shock of learning how to give myself injections, it really has been a good choice. Ive now been diagnosed just under 2 years...been on Rebif almost as long. My MRIs which I get every 6 months so far have shown no new actiivty (that means its working for me) and overall Im still okay. My eyes, now and then are in pain, but nothing like the first time.. i use a steroid drop now and then to keep them under control..but only occasionally, its not a good idea to use them often. I dont take pain meds, but do have significant pain in both my back and left hand...they think its connected and know its MS. I do go for that shot on Tuesday night, but thats another post, and yes, im scared to death. Ive been on IV Steroids twice in two years...both times they did help, but I hate the after effects...I would recommend them for anyone who is in distress though...they do help usually. And, i see my docs minimum of twice a year to keep up on what is happening with me.
Im still working way too many hours, have a lousy boss and a great job..and most of the time a happy marriage, although we have only been married 4 years and no one expected this when we said "I do: 18 months before it all happened..consequently, my marriage isnt what it should be..and my husband no where near as supportive as he should be. So, okay, the marriage, not all that great...but I cope. I do everything I always did- run around too much...take all sorts of supplements and attempt to watch my diet..cut out alot of crap and try harder to eat right...but honestly, eating what I want is my reward for sticking myself with a needle 3 times a week. Those nights, I break down and have some low fat ice cream- or eat some chocolate cookies..what can I say? Im 41, have MS- and do my best! I think im doing okay overall with all of that part anyway..
So, go back, read my post, write down the names I gave you and start a journal or notebook of this stuff.....you MIGHT or might NOT need the info in the future, but no matter what, start getting those notes/test results/films together..call wherever you had any tests done, they HAVE to give you copies of the results...so start getting them together.
We will all help you thru this. Bearygood also has lots of knowledge on everything from Optical Neuritis to general MS health and she is also great at supplements/vitamin info...she is not far from us in NYC and interestingly has a differnt take on taking disease modifying drugs (like my Rebif) she doesnt use any of them and has her own program which is working for her..so keep up on her posts as well..youll learn allot. Everyone here has something to say and youll learn something from everyone...but if I can help you with local help, shout out...and keep us posted on what you hear from your doc. Remember one thing- we were all in your boat once, and we all know how you feel, you are never alone with this board!
Aww man Nikki, sorry to hear you're having an MS day
I felt like crud today as well compared with the last 2, but I think this cold damp weather did me in. Groggy and my right side of my face feeling all numb-like. I'm going to pamper myself tonight, relax and get to sleep early
Hi all, I am new to this Message Board, my name is Tanya. I was dx with MS in 1984 but the Dr's now think that my initial onset was at the age of 13 in 1974.
1984 was a busy year for me. My husband and I had just broken up in Sep. 1983, I had 2 small girls and the 2 year old had burned herself terribly at a play group. I was studying at University and I was so poor that I could not afford food for myself as well as my children - I ate their left overs and my weight dropped to 90 lbs. I am 6' tall. I had been dragging my right leg but thought that I had done myself an injury at bowling - a one time outing, I was dropping things and my 'sweet' mother said that I was showing signs of insanity.
I saw my GP and he said that even though he did not think that my loss of grip meant that I had a mental disorder, he did however recommend that I see a psychologist to talk through things.
A desperate call to Lifeline where a woman informed me that I had not been receiving my entitlements as a single mother. My money problems were solved. She organized a loan from a benevolent society to get a small car to transport myself and my girls around to get groceries and go to play group.
My mother was terribly abusive to me in every part of my life. Physical, psychological and emotional abuse from the earlist memories that I have, has been given to me as the reason I developed symtoms so young.
1984, I had some terrible pains behind my left eye and just after my exams [still trying to be super woman] I awoke with a fuzzy patch of vision in my left eye and went to the hospital to get it checked in outpatients. I left my girls with a friend's husband saying I will be back in 2 hours. 2 weeks later I was allowed home for a weekend and my girls had been picked up by my sister - they stayed with her for a month.
The Dr's at the hospital said that it was serious but would not tell me what was wrong, the day after getting to the hospital I was totally blind in my eye. I had blood tests, lumber puncture, VEP, CAT scan, and was started on adreno-cortico-trophic-hormone ACTH. My strength picked up amazingly but my sight did not return for over a year. Even though I felt strong I could not maintain this strength for more than a few minutes. This was the old fashioned way of carrying out a dx. Even though that Dr's felt 99% sure I had MS they were not going to tell me until the next exacerbation. I read a Dr's book with his permission and read that 95% of people presenting with Retro Bulbar Neurosis [you call it ON] go on to develop MS. I ran down the hall and said to the Dr "you have not been asking me the right questions" and went on to tell him of my other sx.
Now after that lengthy introduction - I have had MS dx for 25 years. I have had only 2 mild exacerbations, I take no 'MS' drugs. Last week I saw my neurologist for the first time in 7 years. I have had prednisone when exacerbating. I had a new marriage and a son when I was 26.
I changed my lifestyle dramatically. I stopped super heating my body by playing sports and hot baths. I take a number of vitamin supplements and following a fracture was dx with osteoporosis - from the length of time I was bedridden at the age of 13. I take vitamin D and calcium. I eat minimally and healthily and keep my weight down to a reasonable level. MS dx is not the end of your life, it is the start of a new life. I did not cognize that initially as I was terrified of a future where I could not care for myself or my children. However, it has all turned out OK.
From what you have written and my extensive knowledge of my disease of 25 years of interested personal study, I regret that your dx. will be MS. However, I might add that my MS life has been full and joyous, my children have grown to be wonderful adults, As frustrating and uncertain this disease can be, there are people who are worse off. I can't imagine my life any differently, it has been a happy one.
Good luck and strength to you all in the future. God bless.