New here...with questions

[woodstock]

Was just diagnosed with MS yesterday and have lots of questions. Diagnosis was based on ER referral because I went five days with having slight numbness on right side (started in face the day after starting ear drops for an ear infection and spread) with no other symptoms (no signs of stroke, no headache, no fever, no tiredness, no loss of grip.

The neuro exam was negative as were the CAT scan and MRA. The brain MRI showed a few lesions, so a spinal tap was done. Whatever the results of that, they indicated possible MS. The neuro gave me a stack of binders on the different meds and another appointment in a week to decide on a medication.

I've had lower back problems off and on for a while and know I have arthritis in my tailbone. Since the ER visit almost 2 weeks ago, I haven't gone to physical therapy and I'm feeling a burning sensation on my spine halfway down and in my lower back with some pain. Would this be more likely to be a symptom of MS that I should call my neuro about or just normal back pain?

I did get the neuro to agree to do a spinal MRI (tomorrow) to check for lesions, but am concerned because the order only says for a C spine, which I don't think is the entire spine and certainly isn't where it is bothering me.

Concerns...I'm 48 and this is my first experience with MS. Is there anyone else here with late onset/diagnosis MS? What kinds of questions should I be asking my neuro? What info should I expect from the neurologist? Yesteday, I did ask him what kind of MS and to explain where the lesions were and how many and I just don't feel like he truly explained everything.

From my research, it seems like Avonex, Betaseron, Copaxone or Extavia are going to be the best choices. Anyone have comments on those? I'm leaning toward looking at Avonex due to 1 x a week (and I faint at the sight of needles, so self-injection would be a problem).

[Justsayyes]

I'm thinking you are too young to have gone to Woodstock
however we do have something in common being diagnosed at age 48. While you can read some generalities about age of onset, it is very individual.

The fact that your symptoms are sensory can indicate a mild course.

You might want to ask for copies of you MRI report and spinal tap report. It might help for you to understand your results more clearly, and to have on hand in case you want a second opinion.

I've had other tests, CT scan and MRA that were normal as well. They rule out other things, don't rule out MS.

I suspect your MRI of C-spine is to check for lesions consistent with MS, not to look for orthopaedic problems in your lower back. Most often spinal lesions are in the cervical area.

Best of luck with your MRI tomorrow. You could try and call and see if the doc will expand on what they are looking for. Worth a shot. He could always fax an additional order in perhaps?

All the meds are worth considering, all similarly effective. More on that later!

[babygirl_vic]

Hey and welcome to MSWorld!! I'm sorry you have this awful disease!! But glad you joined!! I'm 27 so I don't know about the late onset. But I have lots of nerve damage and pain and muscle spasms is my biggest complaint with this disease.

Have you had any nerve testing done?? To see if that could be part of the back problem?? I've heard alot of people say they got to chose their 1st meds, I did not. I was put on Rebif and wasn't given an option.

Are you comfortable with you're neuro?? I would get a second opion....I would ask for you're records and go to another neuro before starting any meds, just to dot all your i's and cross all your t's!!

I hope you get to feeling better and just take this a day at a time, I know how much of any information overload it can be at first!! Take everything a day at time!!

[0485c10]

I'm scratching my head to think of something useful for you. I only have lesions in my cervical spine not in my thoracic spine. a complete spine mri is cervical & thoracic.
the spinal cord ends at the first lumber vertebra after that the spine column branches out into roots. ms is a disease with lesions on the brain,optic nerve or spinal cord. lesions on the roots would be a different disease.

back pain from ms can also be caused by a non normal walking gate we end up using because of the symptoms of ms. with your lateral symptoms you might have been using an abnormal gate to compensate for a while? causing back pain? did pt mention anything to you?

i think you should call the doc and ask if you can get a thoracic spine MRI too. Others will have experience with thoracic spine lesions, i just read that spine lesions can cause radiating pain around the lesion. so if i were you i would want to check that.

but spine MRI's are less distinct than brain MRI's, a thoracic spine lesion might not show on the mri because spine tissue is more dense than brain tissue and the mri pic. is less clear because of that and because of the movement a person has to do while they are breathing, also makes a spine mri less clear. But symptoms of spine lesions are so distinct often when mri's had even less resolution than the do now-- just the symptoms alone would identify where a lesion had to be.

spine lesions can affect everything below the level of the lesion not above. spine lesions more often affect both sides and brain lesions more often affect one side. but with ms they are just generalizations...except for affecting anything below ,not above, the level of the spine lesion.

brain lesion can be bilateral and spine lesions can be unilateral. depending where in the brain or spine the lesion is positioned. it's just with bilateral symptoms a spine lesion would be suspected first and with unilateral symptoms a brain lesion is suspected first.

I was dx at 41. at the time the average age for ms diagnosis was 20-40. so i was 1 year outside the average age. they have since changed the average age to 20-50 because i believe there are more and more people being diagnosed later.

i did not get my first mri report until 8 months after i was diagnosed and then i found out i could ask for it. i just called the mri center and they mailed it to me for the cost of postage. the mri center i go to has a policy that they do not give a patient a copy of the report until after the ordering physician has seen it..but it had been 8 months since the mri so they were ok with mailing it to me. now i call the doc office for a copy of the report so i can get it sooner.

i remember the frustration of the doc not explaining all to me, just told me it was MS without a doubt based upon the MRI and it was better for me than if it had been a stroke. didn't explain to me what was on the mri-i only found that out when i got a copy of my report.

hopefully your doc will revise the MRI order to include the thoracic spine after you tell him about the pain you have in your spine and your concern that it too might be ms. while at the mri center ask for a copy of your written report.

but if he doesn't order a thoracic mri, the treatment meds are the same for spine lesions,brain lesions, or spine w/ brain lesions--whether a thoracic spine lesion is there or not, does not change his treatment. more it would be to reassure you that you know if its ms or you need to be looking for something else causing your lower back problems. since spine lesions are difficult to see on an mri, even if the mri does not show a lesion, does not mean a lesion is not there.

a closed tube mri is better to see ms lesions than an open mri especially for spine lesions..

[Shallwearpurple]

mri

My neurologist ordered the entire spine for MRI with and without contrast. C means cervical. T means thoracic and L means lumbar. Technically, the spine ends before the lumbar section, but not in everyone. The very end can go slightly into the lumbar section. Mine does.

If you are also having lower back pain, I'd ask him to check that area as well. You might as well be thorough. These tests are expensive. You don't want to come back next year to do more if you can do them all this year while you are already meeting your deductible and maybe even your stop loss with your insurance. The lower back probably isn't MS, but it is something.

A lot of people have lower back pain and we think of it as normal, but it isn't. Something is causing it.

Get copies of all of your tests: MRI's, blood tests, everything. Keep a notebook. That way as the doctor is talking to you, you can keep notes and have a reference to help you remember the questions you want to ask. In the event that you do change doctors at some point, you'll know exactly what tests have been done and the results. If you have the proof in hand, another doctor will be less likely to repeat tests unnecessarily. That will save you time and money. If they do need to repeat, they have a good reference for what the tests actually show by comparing past and present.

In the past, we have been accustomed to the doctors sharing information with one another and having the records on hand. Now that most of them use computers instead of paper, I have found that they don't always look up the answers they are looking for. They defer to our memory because they are not yet fully accustomed to the computer records instead of flipping to the "pink page" to quickly scan and get information. The computer records actually take longer to look up. Sometimes they just skip it instead of looking like they are fumbling in front of us. Keep your own set of records for tests!

For MRI's you can get a copy of the pictures on disc as well as the written report by the radiologist.

[lemstar]

I agree about a second opinion. I also think its essential, if at all possible, to have an MS specialist to follow you. I had the local "MS specialist", and he sounded like your doc--too quick and dismissive. Then I went to two different real MS specialists, i.e. this is ALL they do, and wow, what a difference. They each spent a lot of time with me, and came to similar conclusions at the time. I have since chosen one of them, and go twice a year. Its over an hour away, but its worth two days a year to know I am getting current, consistent, appropriate treatment.

I have brain and cervical spine lesions. Never had thoracic MRI, and it really doesn't matter that much. I also have arthritis at C6-C7, which could contribute to my symptoms. My lesions were typical of MS, and left no room for doubt. I was diagnosed at 53, although my first "episode" was when I was 24. Some symptoms remained through the years, and now in retrospect, I see others that were likely MS related. My symptoms are mostly sensory, with some mild weakness and occasional tightness on my left side.

Be persistent and smart, and stay in charge of your medical care, and see an MS specialist!

[lemstar]

one more thing--the shots

No one could be a bigger injection chicken than me. I chose Rebif, three times weekly. I can't believe it, but I did it! Just search the medication forum for "Rebif weenie". That was me. I was terrified. But they have this auto inject thing, where you dont really see the needle. YOu just put it up to the site, and push a button. Sure, it stings for a minute, but if I could do it, anyone can. Avonex is intra muscular, so while its only once a week, its into the muscle, with no auto injector thing--just a straight injection.
I am not on any meds now, but that is a whole other story, that is kind of long. (PM me if you want more info about that).

[KarenR]

(PM me if you want more info about that).

lemstar,

MSWorld does not have a "PM" feature!

You can, however, put your email address in your profile for all logged in, registered users to see.

Or, visit our sister site, http://friendsofmsworld.proboards.com/index.cgi
which is a board for more off-topic conversation, and has a PM feature.

[JFK43]

Was just diagnosed with MS yesterday and have lots of questions. Diagnosis was based on ER referral because I went five days with having slight numbness on right side (started in face the day after starting ear drops for an ear infection and spread) with no other symptoms (no signs of stroke, no headache, no fever, no tiredness, no loss of grip.

The neuro exam was negative as were the CAT scan and MRA. The brain MRI showed a few lesions, so a spinal tap was done. Whatever the results of that, they indicated possible MS. The neuro gave me a stack of binders on the different meds and another appointment in a week to decide on a medication.

I've had lower back problems off and on for a while and know I have arthritis in my tailbone. Since the ER visit almost 2 weeks ago, I haven't gone to physical therapy and I'm feeling a burning sensation on my spine halfway down and in my lower back with some pain. Would this be more likely to be a symptom of MS that I should call my neuro about or just normal back pain?

I did get the neuro to agree to do a spinal MRI (tomorrow) to check for lesions, but am concerned because the order only says for a C spine, which I don't think is the entire spine and certainly isn't where it is bothering me.

Concerns...I'm 48 and this is my first experience with MS. Is there anyone else here with late onset/diagnosis MS? What kinds of questions should I be asking my neuro? What info should I expect from the neurologist? Yesteday, I did ask him what kind of MS and to explain where the lesions were and how many and I just don't feel like he truly explained everything.

From my research, it seems like Avonex, Betaseron, Copaxone or Extavia are going to be the best choices. Anyone have comments on those? I'm leaning toward looking at Avonex due to 1 x a week (and I faint at the sight of needles, so self-injection would be a problem).

It is diffcult to hear this diagnosis and it is natural to be stressed out and experience a grief, so to speak. Like you, I was diagnosed late at age 55, but when I say "diagnosed", they highly suspect MS based on spinal lesions and symptoms (mine are all sensory). I opted not to have a lumbar puncture, so that stops my Neuro short of giving me a defintive diagnosis.

If your symptoms are mild and sensory, which they seem to be, I would recommend Copaxone because it has the fewest side effects. You do have to get used to the daily injection that is under the skin, not intermuscular, but there are no flu-like symptoms. I too was needle-phobic, but the auto-injector makes it easier, at least for me. After 6 months on it, my most recent MRI show no new lesions or further development.

Your Neuro should be talking with you, at length, about your test results, what they mean and what therapy is best for you. This disease effects all of us differently and the close collaboration with your Neuro is key to effectively managing the symptoms. One thing I will add, if you feel you are not in sync with your Neuro, find another one who specializes in MS who you have a good repore with.

[Toomnyhats]

I agree with others - a 2nd opinion from an MS specialist would be a really good idea before starting any treatment. Call the MS Society for a recommendation.

Take a list of questions with you & be prepared to "force" the doc to answer, if necessary.

[Lendi]

Hello and welcome to MS world although I'm sorry you have reason to be here.

I was DX'd at about your age although I had probably had MS for a few years before I was DX'd with it.

I dont' really have any more advice other than what's been posted. Just don't get overwhelmed with all the knowledge. Take small bites and let it settle.

take care and again welcome.

[Temagami]

I just went through this in April- May and made sure to get tested for: Lyme, B12 deficiency, Vit. D deficiency, HIV, sjorgens (sp?), and yes, there were more. Itīs worth getting a copy of your med records. If you can access your records online from your ins. co. thatīs handy too. Ask about the MRIs to know if contrast will be ordered b/c if they forget and want it, youīll have to go back for another. You need to be your own advocate, sorry but itīs true.
I am a huge needle-phobe and wuss. I opted for copaxone due to the least side effects. Started with the auto-injector in mid june. Well, not even a month later, I am doing manual injections b/c the pain is significantly less. The pain from either is not from the shot, but rather the medicine interacting in your body. I do the shot at night so I can lie down with an ice pack. I canīt imagine starting my day with the pain and not having access to the ice pack. So, get your records, read them with a highlighter, make notes, ask questions and keep reading.

[woodstock]

Update

Thanks to all for your good advice! Am waiting on a call back from a neuro at Johns Hopkins Baltimore who specializes in MS for a 2nd opinion. Did not have the cervical MRI done today as my neuro called in an additional order for a thoractic as well as cervical MRI with and w/out contrast and they didn't have time to do all that til Wednesday.

Went to the hospital and got my entire file. Maybe someone can help with interpretation? From the brain MRI (w/out contrast): There are several, approximately five, T2/FLAIR hyperintense foci within the periventricular white matter directed perpendicular to the axis of the lateral ventricles. The largest focus measures 6 mm adjacent to the left mid body of the corpus callosum, axial image 16 of series 11. A few of this foci likely involve the corpus callosum. The second largest focus measures 4 mm, left occipital horn white matter image 12 of series 11. Overall, these findings in this distribution and in this age group are most suggestive of multiple sclerosis plaques.

Then, from the spinal tap: The patient's CSF contains >5 well defined gamma restriction bands that are not present in the patient's corresponding serum sample. These bands indicate abnormal synthesis of gammaglobulins in the central nervous system.

In trying to read the other parts of the spinal tap results, the only thing I see is that the TP-CSF (whatever that is) is high at 52, when the range is 15-45. Otherwise, I read nothing else that indicated abnormality.

Any idea what all this means? I'd like to know so that I know what questions to ask when I meet with the neuros.

Thanks so much! You all are awesome!!!

[Bob698]

Hey Woodstock;
You have to be careful with the free advice stuff. None of us are doctors and more importantly, none of us are YOUR doctor. That's who is going to be most important to you over the next couple of months.
For the time being, just let them do their thing and try not to worry. What's important right now is giving the docs as accurate a picture as possible, don't let us pre-color your views.

[0485c10]

Hi Woodstock, i'm really very conflicted right now. i advised you to get your report but now after reading bob's response i feel rather scummy about telling you anything i learned about mri reports from my own experience. maybe you need to learn learn for yourself too? it kept me busy when i was going through the shock of diagnosis. i would rather proceed by PM messages which can be done at this site if your interested. KarenR pointed it out in reply #7

http://friendsofmsworld.proboards.com/index.cgi

i signed up as a member there, the newest one until you create your own profile. .. just register, then select members in the bar at the top,find my log in name,0485c10. send a PM (-private message),if you are interested.

you can also google the terms you are unfamiliar with then talk to the doc about any questions you have that's mostly how i did it.. if you get enough info in this thread to answer any questions you have i won't expect a PM.
(I wasn't the only one that advised you to get your mri report so other should respond too)
Else if there is anything i can do, just let me know by PM

like i said i feel conflicted: i advised you to do something then i'm backing out. this response is a "middle ground" reply.