not dx yet but a couple of ?s

[salamandertom]

I have an apt on the 29th with an MS specialist and I will have a LP so from what I understand that will be fairly conclusive in answering if I have MS. I recently developed ON and numbness in my extremeties (mainly my right leg). I did have some numbness in my trunk for a few days as well. My fingers are pretty much numb all the time.

I had stayed away from reading about MS too much, until I got the apt with the MS specialist. I read on their websight a list of symptoms. I didn't realize how many of the symptoms I actually had, since my neurologists have not asked me any of these other ones. I did however tell the neuro one of them during my last visit just because it did involve my eyes, and I wanted to be sure I had mentioned it in the past, which I hadn't. My eyes used to shake back and forth uncontrollably (not at the same time but either one could do it) and that started about 4 years ago. The last time it happened was about 8 months ago. I had told my eye doctor, but we all attributed it to stress since it started when my son, who was then an infant, was going through various tests and hospitalizations.

I also have had intense and painful muscle spasms in my legs that wake me up at night for the past several months. I never thought anything of that beyond needing to eat more bananas. Apparently that is a symptom too. I also have several of the urinating issues that are listed - especially that one about being about to start urinating. That started this summer.

I know those are all fairly common symptoms, but coupled with the ON, I was pretty upset when I read that. Am I reading too much into it?

My other question is about drinking alcohol? Is this something that will worsen symptoms or is it okay? Probably a silly question, but I wanted to ask. Thank you!!! I feel pretty lost.

[heliotrope]

I've been through the muscle issues in the eye myself (the eye moving oddly) and at this point, I wouldn't worry about it until you know more. It can be tied to MS or it may not. There are versions that are "MS typical" (which tend to appear with MS patients) and there are versions that aren't considered MS related. Someone else may disagree with me, but considering how long ago it was, I think you'd be guessing about which it was - and probably worrying unnecessarily.

[Lois Shea]

Optic nuritis

I have had some very interesting with eyes. My first experience was double vision. A few days later I was driving downtown Chicago then all of a sudden Oncoming traffic was driving on top of the cars parked on the side of the road. I tried to park on the side of the road without hitting anyone. I did. I covered one eye and could see ok. Covered the other one could see ok. Folded up a kleenex put it over one eye and went on to work in downtown Chicago. Have had many interesting experiences. Have the lumbar puncture. It should let you know if you have MS. The MRI is good way to know.

Lois

[jordynbbz]

hi i'm like you i haven't been diagnosed yet and i'm reading into it all so much, i just can't help it since its been several months since the idea of having MS was brought up by my doctor. my lumbar puncture was clear and showed nothing but my MRI's and blood tests were all looking like MS. it is a confusing disease and i hope everything goes well for you. this post is probably pointless aha.

[Redwings]

I have an apt on the 29th with an MS specialist and I will have a LP so from what I understand that will be fairly conclusive in answering if I have MS. ... I know those are all fairly common symptoms, but coupled with the ON, I was pretty upset when I read that. Am I reading too much into it?

No, the LP is not conclusive in answering if you have MS. First, there are other conditions besides MS that cause some of the same results being looked for in an MS workup. A positive LP is extremely helpful in diagnosing MS, but a positive LP alone can't be used to differentiate MS from those other conditions. Second, not everyone with MS has a positive LP. A negative LP doesn't mean that a person doesn't have MS. So a negative LP isn't conclusive evidence that you don't have MS.

LP results are just one piece of the diagnostic puzzle. The results have to be evaluated relative to your MRIs, other tests results and your neurological signs and symptoms.

When looking at a group of signs and symptoms, it's not reading too much into it to recognize that they all represent a possible neurological (or whatever) cause. Groupings of symptoms give patients and doctors the clues about what conditions to start looking for first. ON along with other symptoms having a neurological cause is suspicious for MS, but it's only a start in where to look. Every other condition that could be causing your symptoms and test results has to be ruled out before a diagnosis of clinically definite MS (or anything else) can be made.

My other question is about drinking alcohol? Is this something that will worsen symptoms or is it okay?

The answer is maybe. And with that, it's important to be clear about what "worsen symptoms" means.

Alcohol is a central nervous system depressant. So if, for example, a person has problems with balance, coordination or motor control, an inhibition of motor control caused by alcohol can make those symptoms worse. In other words, if a person already has trouble walking, being drunk is likely to make walking a lot harder. A little alcohol might make no difference beyond its usual effects. It depends on the person, their symptoms and the amount of alcohol involved.

"Worsen symptoms" does NOT mean that it makes the disease of MS worse. It doesn't. As a lot of college students can tell you, alcohol has been associated with the death of brain (and liver) cells. But that's a whole different topic...

[salamandertom]

No, the LP is not conclusive in answering if you have MS. First, there are other conditions besides MS that cause some of the same results being looked for in an MS workup. A positive LP is extremely helpful in diagnosing MS, but a positive LP alone can't be used to differentiate MS from those other conditions. Second, not everyone with MS has a positive LP. A negative LP doesn't mean that a person doesn't have MS. So a negative LP isn't conclusive evidence that you don't have MS.



When looking at a group of signs and symptoms, it's not reading too much into it to recognize that they all represent a possible neurological (or whatever) cause. Groupings of symptoms give patients and doctors the clues about what conditions to start looking for first. ON along with other symptoms having a neurological cause is suspicious for MS, but it's only a start in where to look. Every other condition that could be causing your symptoms and test results has to be ruled out before a diagnosis of clinically definite MS (or anything else) can be made.


The answer is maybe. And with that, it's important to be clear about what "worsen symptoms" means.

.

"Worsen symptoms" does NOT mean that it makes the disease of MS worse. It doesn't. As a lot of college students can tell you, alcohol has been associated with the death of brain (and liver) cells. But that's a whole different topic...

Thank you very much. I am disappointed to hear that the LP isn't conclusive, but I am glad that I am clear now. I am also glad that I am not reading too much into it, but also that it isn't nessicarily MS. They have already ruled out some things of course like lyme and infections.

As for the symptoms and alcohol I asked because last night I had some and had some odd things happen in my feet. Numbness with some odd pains. Like a strobe light the pains came, and that is the only way I can describe it too. It was very odd.

BTW, I am a full time college student, so I totally know about the abuses with alcohol and students. Yikes. (I am a non-traditional student that commutes to a tradtional residental campus)

[salamandertom]

Oh yes, and I had some "spots" or foci on my MRI that were also there 14 months ago. They assumed then they were from migranes, but now there aren't sure if they are from migranes or MS. I forgot to mention that.

[0485c10]

I have always been a cheap drunk with alcohol. Even before I knew I had MS...funny situation, I was a supervisor in a plant and one day I took my crew out to a local tavern to buy them all a thank you drink for their efforts. I was a young supervisor, trying to be sophisticated and "bond" with my new crew in a leadership role. I sat down on a bar stool and ordered a beer for all of us. Then fell off the bar stool while I was waiting for him to get our drinks.....then I was a big joke, that the new supervisor lynn falls off the bar stool before she starts drinking, just ordering a beer will cause her to fall off the bar stool. that was about 8 years before my MS diagnosis. Last time I took anyone out for a drink!

Then 4-5 years before diagnosis I had some minor surgery. The anesthesiologist wasn't able to reach me on the phone the night before to ask me ?, so he had to ask them just before he put me under. I said I had no health issues, no problems with anesthesia in the past and I had one past surgery for a broken ankle. Then I told him I'm a "cheap drunk" so I shouldn't need much anesthesia, and at this moment I really don't want to be awake, so that will make me go under even quicker....but everyone lies about their weight & in the US they normally don't lie up about their weight. So use enough anesthesia for any possible lies I may have written on the form about my weight.

ON was my first symptom. I was diagnosed 19 years later with MS. Back when I had ON, MS meds were not available and the MRI was still too new to be available. So an ophthalmologist treated it with oral steroids and told me this could possibly be MS. Then he didn't tell me what MS was. That was before the internet so I didn't look up what MS was and I never told any future doc's I had ON in the past which would have tipped them off to MS. Instead they told me these things happen and they clear up on their own.

So I was surprised when 19 years later I was diagnosed with MS after they checked for possible stroke, it was MS instead.

At the time I thought I should have known & that the ophthalmologist should have made sure I continued some type of monitoring.

I read at the time when I was diagnosed with MS(2004)...that while ON is the most common diagnosing symptom for people with MS---because other MS symptoms are likely to be blamed on over excertion or things like that, but ON causes a person to see a doc while other symptoms a person often doesn't.

I read that while ON is the most common diagnosing symptom for people with MS, only 60% of ON will be caused by MS. The other 40% will not be from MS. It will be caused by something else or it will be an "idiopathic symptom", like a fever of unknown origin--a cause for it is not found, the bodies nervous system just has a glitch, and since its not causing issues a cause will never be found, it will remain an idiopathic symptom with unknown origin.

You might be interested in reading the "2009 MS Differential Diagnosing Guide " In it is has a table of typical, less common but still observed & atypical presentation of MS symptoms. It explains when an LP is needed and when an MRI will do. You can download the procedure at this page for free. On the right side it says Free Full Text(PDF) Free.

http://msj.sagepub.com/content/14/9/1157.abstract

Your diagnosing path, I don't quite understand. I'm in a mid sized town in the US. An ER doc diagnosed me when a stroke was suspected. After a MRI determined that it was MS instead, I was transferred to a general neurologist for treatment? A general neurologist can diagnose and treat MS but your being referred to a MS neurologist? Have you had any MRI's yet? Why were you sent to a neurologist in the first place? Have there been any tests done to determine what caused you to be sent to a neurologist? Why were you sent to a neurologist in the first place?

For me, the nearest MS specialist is over a 100 miles(in a 4 season climate with ice and snow making traveling difficult in 1 of the seasons) and I am very satisfied with my general neuro. I wouldn't want the driving requirement for a MS specialist, for me. What about you--why has your general neuro refered you to a MS speciist neuro?

[0485c10]

And 2 years before my diagnosis, I was pulled over for OWI, drunken driving when I had not been drinking. I passed the Breathalyzer but flunked the road field sobriety tests.....you know those field sobriety test are just a road neurology test to see how much your CNS has been affected by alcohol.

They weren't quite sure what to do with me....I demanded they take me to a hospital to get my blood tested because I had not been drinking. They asked me if I was a diabetic. I said no. Then they made me rent a motel room and made me promise to not drive again until the morning, after I got some sleep. I was in the city,only 2-3 miles from home, so after they left I drove home....but i got stuck with that motel bill. I suppose that was better then jail!

Then, 2 years after I was diagnosed with MS, I failed the touch my finger then touch your nose test at my regular neuro appointment....

So those road field sobriety test should be covered under health care cost! I geuss that would make cops some kind of deputy docs? we just need to teach them to recognize other conditions besides diabetes.

[Bob698]

As far as I've heard, drinking in moderation is not an issue with MS.
Of course, common sense applies if you wind up with "side issues" such as depression or vertigo but stickly speaking, an occaisonal drink is fine.

[mack]

Hi,
I don't think that drinking has any effect on MS. Smoking might. In my earlier days of MS a few drinks relaxed me and I could dance and such longer at clubs. I was dx'ed with an LP. The doctor will look for banding in the fluid and if you have the symptom history to match it he may say MS.


Steve

[salamandertom]

Your diagnosing path, I don't quite understand. I'm in a mid sized town in the US. An ER doc diagnosed me when a stroke was suspected. After a MRI determined that it was MS instead, I was transferred to a general neurologist for treatment? A general neurologist can diagnose and treat MS but your being referred to a MS neurologist? Have you had any MRI's yet? Why were you sent to a neurologist in the first place? Have there been any tests done to determine what caused you to be sent to a neurologist? Why were you sent to a neurologist in the first place?

For me, the nearest MS specialist is over a 100 miles(in a 4 season climate with ice and snow making traveling difficult in 1 of the seasons) and I am very satisfied with my general neuro. I wouldn't want the driving requirement for a MS specialist, for me. What about you--why has your general neuro refered you to a MS speciist neuro?

14 months ago I suffered a nonretractable status migrane that made my vitals and electrolytes so out of whack that I required hospitalization for a week. They tried numerous meds before finding one that could bring me any relief. I had a spinal tap, and got a spinal headache on top of that. It was a very miserable experience. Before being hospitalized, I had suffered 5 - 6 headaches a week, which they told me were actually migranes. I was taking WAY too much tylenol. So, I was under a neurologists care for chronic migranes already.

I saw an opthomologist for my ON, but at first they thought it was a serous retinal detachment. I saw them on a Friday, but by the time I went back that Wednesday my vision was much worse and he knew it was retro bulbar optic neuritis and told me I needed to see a neuro. Since I already had one I obviously saw that one. Except, since the one managing my headaches was a PA, they gave me a different neuro than the one I saw inpatient. (I don't care for her) She ordered an MRI of my brain and caratoids. Then when those were similar to the ones I'd had 14 months ago, she put me on oral pred (starting at 100mg) on that Friday, telling me I would see results BY monday. I saw no change, in fact worsening symptoms and had to go to the ER for tachycardia on Saturday. (from the pred presumably)

I had numbness in my right leg at this point. The ER doctor walked into the room and asked me if I had MS and why I wasn't on IV steroids.

On Monday I went back to the neuro and saw the PA, who "consulted" with the neuro who then walked in and aggressively asked me why I was asking the neuro on call about IV steroids. I was so put off, but I told her about the ER doc, although the PA had mentioned them intially the week before. I don't know why she needed to know why I was asking about them anyhow. Then after I answered to her satisfaction she told me she was going to order then for me that day anyways. I really don't know, or care what her deal is, but I was just looking for someone to help me get better. Not start demanding answers from me about where I get information about treatment options. Yikes. I dislike doctors that oppose informed patients. I am a premed student, and even if I weren't noone should be treated like that.

Anyhow, I was put inpatient b/c of the tachy with the pred, just in case I did it on the solumedrol. I had very, very bad IV experiences inpatient. I am a terrible IV person, I have tiny, bad veins and it was not fun. I had MRIs of my c and t spine done as well. WIth and without contrast.

Questioning neuro said my brain MRI was unchanged, but the one I saw inpatient told me that there were small changes that could be from migrane or MS and she needed more information. My c and t spine were unremarkable.

The scan from 14 months ago of my brain had white spots, or foci - which they had attributed to migrane. But I guess now they are saying they are not sure.

So that is why they are sending me to the specialist. I have an evoked potential test with my regular neuro on the 23rd. I live in so. NH. I live halfway between mass eye and ear and Dartmouth Hospital. I am seeing the specialist at Dartmouth. It is a 2 hour drive, but frankly I have to travel there several times a year for my chronically ill son who is almost 5. We actally have our appointments two days in a row, so we are staying up there at the local children's house where we usually stay with him. I trust that hospital and would rather travel to have all my care in one place, I have a hematologist I see there and my neuro-opthomologist will be there. My son has all his specialists in the same system and it makes things a lot smoother.

So, that is why.

[0485c10]

Thanks for giving an explanation for someone who isn't here much while others may know your story. It doesn't sound like you need a MS specialist specifically, although it might be the most direct path, you just need a neuro-doc to take ownership of your overall treatment. That hasn't been the case so far, sorry you went through it. your a person not a package of individual non interacting symptoms that are treated independently in a non interacting manner. I hope that ends for you with this MS specialist.