Multiple Sclerosis Lesions - New to this?
 

Hi all - Im new to this, so I apologize in advance. I went to the doctor 2 months ago with numbness/loss of feeling in both of my hands and for electric show feeling down my spine when I looked down. After multiple blood tests I was sent to a neurologist who had 3 MRI scans and VEP test ordered. C-spine MRI showed 2 lesions, Brain showed 5 lesions - just got these results yesterday from my primary who I called and demanded the results because my nearologist is on vacation. My primary stated that this is all consistent w/ MS. That is all I know right now because my nearologist is on vacation until tomorrow, so I am hoping he calls me tomorrow with some more insight.

However, after doing some reasearch online. Im really confused because it seems as if my symptoms are consistent with Lyme disease and I was bit by a tick a few years ago and did nothing about it. It also stated online that the symptoms mimic a severe b-12 deficency which I also have always have, and I also have always had a vitamin D defincency. After the MRI on c-spine was done 2 weeks ago, the nearologist did state that he thought it was MS and thats when he went on vaca while I had the VEP/Brain and thoratic spine MRI's completed. My question is how can I rule out any of the 3 that it could be? Does an LP take care of this? Do I get a 2nd opinion? And my last question and the reason why I registered for this is to find out how do I know what neurologist is the best in my area? I live in Boston and Im not sure if there are any reliable websites that anyone knows of so I can choose the best doctor. Thank you all in advance, as scary as this all is - it is comforting to read these posts and am not in this alone. Thank you again.

PS - If anyone has some questions that you think I should ask my neurologist when he (hopefully) calls me tomorrow to review the results, I would appreciate it!

Sorry you are going through this. were you able to get the actual Report .. or did you just speak to your primary doc.?
....You are Not alone...I got my MRI results and was told my Lesions/White spots appeared to be a Demylinating disease.!! They did not want to come out and say MS until I complete Other tests to rule out other things.
I go for a spinal tap to check the CSF this week...!! ..I am VERY Scared.

Hang in there...Wait to get the Neuro Doc's Words after he looks at the MRI's.

Thank you Carbreezy - I didnt know I could get a copy of the report and just got the results from my primary so will def call and get it tomorrow. Good luck to you this week!!

Welcome Jodi, glad you joined us.:)

Welcome to the community--I hope you'll get some satisfying answers from your neurologist soon!

Don't forget--you can find ANYTHING online (yes, even here)--so try not to get too worked up. I know, easier said than done!

They should do the MS mimic rule out blood tests for Lyme etc. Although I know they are a possibility it seems to me they rarely pan out and most often if it quacks like a duck it is a duck... or MS as the case may be. :o

hi jodi,

i don't want to cause you more anxiety but tomorrow is thurs and if your dr is just getting back from vacation you may not hear anything til next wk. or, his office might want to set up an appt in person so he can talk to you and decide what the next step is.

since you're new to this i would start a medical file on yourself. it will be so helpful down the road if you see any new drs. and for yourself. best to have all the documentation yourself in case drs don't keep track of it. i know from experience. you have a legal right to get copies of test reports and copies of cd's for mri's etc. you may have to sign a release or even go down there. call ahead.

if some of your lab levels are low ask about tx (treatment). i was tx'd with vit D and b12 also to correct low levels.

it's hard to know about what neuro is the best. you can call your local MS society and they will send you names of neuros and MS specialists. i always think it's wise if you get a serious dx (diagnosis) to get a 2nd opinion. again, get copies of medical files. they all will want to especially see the mri.

sorry this is so long. keep us posted.

Just a thought.....you may want to consider getting any type of insurance you don' t have now....before you get a diagnosis.
Life Insurance/disability etc get very tough and or expensive after a diagnosis.
Remember Multiple Sclerosis stands for Multiple scars. My diagnosis was made because of multiple lesions, symptoms spread out over time (meaning numb in this place one year then numb in another place another year) etc.

Thats about it for my diagnosis. Everything else was ruled out first (B12 and Lyme's). There are other things that mimic M.S., but they don't give you lesions on the brain or spine. M.S. lesions are typically called "lesions consistent with a demylenating disease" on the report.....sometimes they say "consistant with M.S."
Monday is a holiday. Hold off til Tues afternoon and see your insurance man Tuesday morning (just in case). Personally I bought Life Insurance at a much better rate before my diagnosis. Now the M.S. is not a terminal disease, but it makes getting certain insurances expensive.
Let us know what your Neuro tells you. I'm sure he/she will want to see you in person and not discuss the finding over the phone. Big Hugs:hug: and don't panic!

Welcome to NT, Jodi. Sorry you are having symptoms. There is a lot of information here and great support.

Best to you,
ANN

Hi Jodi and welcome to NT! Sorry you're having to go through this, but you've found a good place here with us. Hang in there and remember we're here for you. All the best.......:hug:

I really want thank all of you for the responses, I literally have tears. I never knew anything about MS and when people spoke about it, I just thought "oh yeah, that disease that puts people in wheel chairs" and I feel so ignorant that I've always had the "will never happen to me" attitude. This has opened my eyes to reality, and for that - I am extremly thankful.

The neuro called today, stated I have MS and cant make an appt for 2 weeks to go in an see him to discuss treatments but he asked if I could go to the hospital today to start steroid treatments for 3 days. I asked to start is next week because I dont know what benefit that will bring me or any knowledge of the side effects so wanted more time to digest. In the meantime I called an MS center in Boston (where I live) who schedules 6 weeks out but I actually got an appt for this Friday due to a last minute cancellation right before I called, so I am looking forward to that and busy writing down questions.

Funny thing is is that today I felt very dizzy, nauseaus and off balance a bit. Im sceptical to think that this is all of a sudden and too cooincidental to happen on the day of my diagnosis, so im really confused because I dont know if Ive felt like this for a while and ignored it and passed it off as something else or if it really did just start today - either way its real and im very scared now. Thanks guys for letting me vent and talk about my experience. Trying to find the courage now to tell my boss. Thank you very much again. :hug:

Jodi,

Might be best to hold off telling your boss until you have more definite results. Also, you may be more informed yourself and find a way of better explaining what this means. Try not to add this to extra worry at this time.

Ger)

Hello Jodi2225,

Welcome to NT, where friends who understand what you are going through, and may go through in the future are never far away. Please keep us posted on how things unfold.

If I have learned one thing about this disease after 34 years, is that it affects each person differently; and although the journey through diagnosis and treatment may be difficult at times, so too can it be a path of personal discovery.

Please know that we are here for you with an open offer of sincere and compassionate support.

With love, Erika

Hi Jodi

I echo what Erika said so beautifully in her post. Welcome and enjoy the support and friendships you will make here.

This is a lifelong journey, and having people to turn to that do understand is a godsend.

Lyn

Hi Jodi,

Welcome to NT. I'm sorry that you have to be here. It can be very scary in the beginning. I'm so glad that you lucked out and got an appt. at the MS clinic. Because it is so overwhelming in the beginning people usually have a lot of fear and anxiety. I was deathly afraid of ending up in a wheelchair. Just remember that everyone's course of the disease and experience is completely unique. 5 years later I have not had a relapse and am still just as mobile. That may change but i don't see any evidence of it yet.

Since my diagnosis came out of the blue with no warning I had a lot of anxiety about every little thing in my body. You become hyper conscious of your body. It turns out that many of the "symptoms" I was having that I was convinced were MS turned out to be anxiety attacks-such as tingling in my hands, feet, face; dizziness; nausea; headache. You can literally will yourself into having physical manifestations of anxiety.

Grieving and crying is also normal because of what you feel you have lost (your old healthy self). I tried to educate myself but not read obsessively on the topic because it could trigger panic attacks. I found a book by Margaret Blackstone to be very helpful and soothing.

http://www.amazon.com/gp/aw/d/156924...6477843&sr=8-4

I read it over and over again until the book got stained and wrinkly! It offered the perfect amount of information and was a little bit more on the hopeful side which is what I needed in the beginning.

You will find this forum to be very supportive. Don't be afraid to post your concerns, questions etc.

Take care,
Natalie

PS: not sure why there is a winking face at the top! Also read the book above before you tell your boss. I would recommend on holding off until you know more about the disease and can really take stock of where you work and how people will respond.

When my neuro first told me that he suspected I had MS (my very first visit), I was completely shell-shocked. I came home and searched through all of my old textbooks that I had left over from school years before. We didn't have the internet (we didn't even have a computer).

I didn't know anyone with it, I didn't know anything about it. What I found in my book was along the lines of 'Multiple Sclerosis is a progressive neurodegenerative disease, whereby most sufferers have progressively worse and worse attacks until they lose all control of bodily functions such as walking, eating, use of bowel and bladder. Ultimately, most sufferers will be forced to move into nursing homes, and life expectency is dramatically reduced as a result.' The book was a biology textbook, probably first published in the 1970's.

Of course, I cried and cried and cried. It was only a few days later when I went to the library, I was able to see a clearer and more optimistic prognosis for most people. Of course, all of those terrible things can happen, but if ever you were going to diagnosed with MS, now, with all of the drugs and research that is going on there is so much more hope.

Here I am, 11 years post diagnosis - walking, and doing almost all of the things that I used to (the important stuff anyway). I have a been a very long time since my last major exacerbation, I have been lucky and life is pretty good (right now anyways - let tomorrow take care of itself).

Regards

Lyn

PS I threw the book in the bin where it belonged!

You must follow the advice about waiting to tell the boss about definite dx, unless you and boss are on such good terms that you confide intimate things.
The person who said we have different paths in MS is right. I am still walking, decades after my first symptoms, but I do walk with neuropathy pain because of a late dx and improper drug treatments, and of course, just because I got older. I am in a wheelchair only to help me reach low shelves in my house; it is my husband's wheelchair, who died three years ago--it is a great way to reach low shelves if you are too stiff or unbalanced to squat.
I am not sure if MS is the only disease that causes brain scars. As most know who know me here, I did have many brain scars at diagnosis, and they moved around. Then I was dx'd later with Porphyria. Sometimes Porph causes brain scars (rare to cause them) but I have a theory that Porph sometimes is a disease in which a chemical can cross the brain barrier and cause MS. This is my theory and I am not trying to get anyone to agree with it--it's just a result of my own peculiar (very peculiar) life path. For a while I thought I had only Porph and maybe not MS, but now I am convinced I have both, and that is why I find this forum so helpful. Thank God for you Neurotalk people.
The advice to get insurance now is absolutely right. I got long term disability through work when I realized I MIGHT not be able to work to retirement, and it did kick in immediately when I had to go on disability suddenly, and still pays me a small stipend every month even though I am now on Medicare and retired.
Bless your journey.

Thanks all again so so much - I went to the MS center yesterday and they confirmed the MS and recommended steroid infusions immediately (i start next week) and then recommended copaxone on a regulare basis - I know nothing of the steroid infusions and the copaxone - ive been reading dilligently - any insight from you guys who have been through it would be helpful. My biggest question is will I be able to drive after the steroid infusions? I have to work right after....and I dont want to have to take 3 more days off :eek:

Im slowly digesting everything, its definately a shock. My MRI reports became availible online for me last night for me to read and I am very upset that when I went for my brain/t-spine MRIs they put on the form that my "clinical history" is 'MS' when it is not - I told the nurse that I was there to be "tested" for MS - So my head is spinning with the thought of the radiologist passed my lesions off as MS lesions without doing his due dillience because he was given an incorrect medical history on me. My family of course thinks im in denial, but I am not - I just have a lot of questions, and I think thats normal?

Im headed out to buy a kindle fire to read the book that was suggested and to read some positive thinking books so I can remain positive, it feels like I am on a roller coaster of emotions right now and im scared im going to lose control. Im sorry if Im posting too much, I swear being able to talk to you guys helps me more than talking to the doctors because you guys just put it in perspective, I really appreciate it. Thank you.

Welcome to the MS club....sorry, but at least you know what you're fighting.

Copaxone is helpful to some in cutting back on the MS attacks but not on most...it didn't stop my progression. My advise try it and see?? Working is okie dokie.

I don't recommend steroids, they only help to possibly shorten your attack, but can be harmful to your body in large/prolonged use. The only thing is you don't know if it worked until, sometimes, weeks after you stop taking it. In the meantime, nervousness, sleeplessness and agrivation are side effects. Working? Up to you?

Neither one is a cure, so It's your choice, if the Copax isn't working, stop it!!!

I hope Copaxone works for you and you are feeling better soon.:hug:

Hi Jodi
..I just wanted u to know that when i got my MRI report it "also" said
"History of MS"....:eek:...I Looked at that and thought What the HECK..!!
..then i thought to myself...maybe they do that for insurance reasons.?
... When i went to the Neuro Doc I NEVER ever thought i had any signs of MS.!
I did have a tiny bit of numbness that would come and go on my face/jaw area.

I am starting to come out of the Shock of this all...i just had the spinal tap a few days ago and tomorrow i will pick up the report. I am 90% sure i got it. But i Don't want it...!!:mad:
Since the Neuro doc has said probable MS ...Now i am feeling weird tingling in my legs and hands...Just an awful feeling..!!

Please keep me posted on when and if you start the steroids and the Copaxone.... ( I am Very scared- i dont do needles)

About all I can say right now is that it is sure a tough time right now. I remember those times way back in 1997. I am an RN so I knew a little but not enough. And my books were from the dark ages which made it worst. So if you do any research make sure it is recent. Steroids have helped me immensly. But a lot of people say that you may get the same result if you wait a long enough time. I prefer to get the results NOW! My neurologist prefers me to keep my use of steroids for her only so that's what I do. Back 'in the days' you could self infuse the cortisone at home. A home health nurse would help you get it starte and you did it yourself every time. But the last time I had it I had to go into a same day unit every day for 3 days. What a hospital bill.Thank God for insurance. Your local MS society will help you immensly. There are books written especially for the newcomers to MS, also for the spouse and for the children. Most MS societies will hook you up with some one your age that can be a mentor. It can be at what ever level you want, a best buddy or an occasional phone call.

Good luck, come back often and let us know how it goes. It' been a long ime wince some of us has gone to an MS center so we don't know what happens there anymore. So that in itself will help us. Also if you want to laugh or talk about your family and this go over to our other MS page, the stumble inn. There you will find anything and everything. Our entire life affects MS and MS affects our entire life so everything is pertinent over there

http://i489.photobucket.com/albums/r...s/30874607.jpg


Welcome to the MS forum, and to NeuroTalk. The people on these forums are great. :)

Thanks all - Start steroid infusions tomorrow, wish me luck! Im not doing too well emotionally lately - I feel as if Im crying, angry, mad, confused and going through this craze of emotions but yet physically feel fine - I just have a little numbness in my hands...I look back and read my posts and then think to myself "Was that really me that typed that?? Is this all really happening to me??" - Its tough. I put on a very strong front to family/friends and will just cry in the car by myself for now. I really just wish they would stop denying me a spinal tap - I think that will help me accept it more. I look up to every single one of you on here and am now addicted to this site, its like my own little world of friends who "get it"- thank you all again.

Hi Jodi

I never had a spinal tap. I didn't need to as the other evidence (clinical and MRI) was overwhelming.

Your tears, anger and confusion are only to be expected, so don't beat yourself up about it. It is a rite of passage that we have all had to go through.

Having said that, visit when you need to, but do not stay in that dark place too long. We don't know where we are going to be in a decade.....but who does?

Life is too short for all of us. Enjoy every day as much as you can.

Hugs

Lyn :)

Jodi.....I am Very confused..? I did Not no they did not do a spinal tap on you..???? I think These days thats "Standard" part of the process...!

Please keep us posted on how you are feeling on the meds etc.

You are Not alone with the crying and All the emotions you are having...I too am feeling the same...( i am Very Depressed )

Hugs to you
carol

I know!! I thought so too, especially where I was bit by a tick (still have the scar where he was enbedded in me!!) and where 4 people in family have lyme - why not just do the LP to rule it out - I have another appt next Friday and hoping they finally listen to me!! Either Lyme or MS is not good, and I dont perfer one over the other - I just want to be taking the correct meds either way. The doctors response was "I've never had anyone actually want an LP - I dont think you need it"

I hope you feel better too Carol!! Thank you for listening!! :hug:

...I Soooo Agree with you..!!!! ... Please contact a different Doc... I am sure the one you have is good...Yet WHY NOT DO THE Spinal Tap..??? ..I Dont get it.!!
My doc is the one that said I had to get one....I did NOT want one cause - really- who wants a needle in their back...:eek: Not ME.!!
Many say they dont hurt...But the local they gave me Hurt like Hell. :mad:

I think it's ok to start the meds like the doc is saying...but Gezzzzz one should Not have to ask / beg for a spinal tap..!!?? Is this Doc a MS specialist ?? are you at a MS clinic.?

Do you have to have an LP to test for lyme? Isn't there a blood test? I'm for getting no LPs unless you must. :eek::hug:

A blood test will do it seems.


http://www.mayoclinic.com/health/wes...-and-diagnosis