Hello Maybe New Here?
 

Hello
I am a 27 year old female whom the MD thinks I may have MS. I had my MRI today and I of course can not wait until Monday to talk to him. I have a picture and I was wondering if anyone could give any input. I completely understand it is not medical advice but people who understand this disease the most knows what they are looking at in a MRI. My crazy anxiety would thank you! :hug:

A little back round a month ago my left hand started feeling numb/pins and needles 2 days later it went to my trunk then my foot. It now is manly my leg and foot. My fingers are a little tingly.

I have more pictures if anyone could help my figure it out I received a cd at the hospital but it only works with DICOM. Any help I appreciate it. Thanks a bunch, as you can see I am going crazy.

I'm of no help concerning the MRI images, but wanted to welcome you to the community. Even though we're all like snowflakes--no two exactly alike--we are still all in the same boat. I remember very well those days of chasing a diagnosis, and I was a basket case waiting for answers.

This is a good place to be--even if nobody can "read" your MRI, we'll give you support and keep you company until Monday! And beyond, if you want!

Welcome TJ, nice to meet you. I know another TJ with MS, but she
is 27, only in her dreams..:D.. Looks like a nice pic of your spine ya
got there. I can't read it either, but please do let us know, as soon
as you find out.:hug:

Hi TJ. Welcome to the community.

Please let us know what you hear on Monday about your MRI. It's hard to wait.....most of us have been right where you are right now. :hug:

I can't interpret MRIs either but I see you're in MA. So am I. I'm in Hudson, what town are you in?

I'm sure the waiting is driving you nuts but I don't think anyone here is qualified to read your MRI. :Sorry:

Thank you for the kind words. I went to the nuero Tuesday thinking at most maybe a slipped disc, the to hear the doc say well ms could cause this, but don't worry( ya ok) I have been freaking since! I have a 5 and 6 year old and celiac disease as well. I would really like to keep my resume to just that! :D

I am from norton ma!

Thank you for the kind words, it's been a crazy week. I went to the neuro thinking maybe I had a slipped disc or something. The doc said it wouldn't cause the whole side to be week, so I asked well what could- bad idea. He then said so calmly ms- but don't worry we won't know until an MRI. Ya ok easier said than done with someone who has bad anxiety. So of course I have been googling non stop! I was diagnosed with celiac last December so this would just top of the year for me!

I am from Norton MA. Looking forward to talking to you all. I will let you know as soon as I do, hopefully sooner rather than later! :)

Another welcome - from Boston, MA.

I'm sure Celiac is plenty to deal with and 2 small children and holidays! Oh, my!

Let us hope that you are just "visiting" us here for a short while.

Best to you,
ANN

and yet another welcome, this time from down in Va Beach :)

Hope you are only visiting us for a brief while {as your doc may decide you don't have MS} - but if you become a memebr of "the club" I trust you will find we are like great old friends!

Welcome TJ…waiting to figure out what is going on, especially with MS, is anxiety-producing; many of us waited years for a diagnosis, some got it within weeks of their symptoms presenting.

I don't know how to read MRIs, and it's best left to the pros. Let us know…be an informed health care consumer. Write down dates of onset of symptoms and when they abate; also keep a list of questions for your doc…and if you can bring a family member or friend as a second set of ears it helps.

Knowledge is power...:hug:

So after trying to chase down the doc he didn't call. Boo to him- so my anxious self took it upon myself to get the radiology report - so I think I may be joining you all but I will wait for the doc to actually call me-

What it did say in the impression is this- possible small focal cord lesion at the c2-3 Level. Although not specific it could represent an area of demyelination. Also consider MRI of the brain.


Will keep you all posted- thanks for the welcomes I appreciate them a all!

Welcome TJ!

MRI's of the spine are difficult to read. I would not be able to read it. Did they only do an MRI of the spine or did they do an MRI of your brain as well? Also, was contrast used? I'm sorry to hear about the possibility of MS for you but please know that we are here for you to help you through the dx process as well as support. Let us know how things are going.:hug:

Hello
They only did a cervical spine MRI . They did do w/wo contrast. It does say unfortunently there is movement so they are unable to see any other lesions. Opps! It felt like a panic attack in box! I'm assuming they will order another spine another with a brain one?

Unfortunately you really have to lean on doctors sometimes. It's a pain but don't give up!

So the doc finally called! Longest wait!

Not knowing i have the report and I'm Nancy drew- :)

He said there is a lesion on my spinal cord so he can't say if its ms or not- yet since its only one lesion. So I need another MRI of my brain and we can figure it out from there. What could cause just one lesion and all my symptoms c'mon doc! Lol I feel frustrated but I understand. I told him though when I bend my neck my left side feels like a shock which is new- then he proceeds to say oh well this is active then. I would like to get an MRI ASAP but with the holiday it most likely won't be until next week. :(

I know in my gut I have ms- I just need the conformation I guess you know?

TJ- Oh, we know. We hear you loud and clear.:P Many of us waited 10 or 20 years for a diagnosis before there were MRI's.

Again, sorry this is happening but it does seem to be happening, doesn't it?

How are you feeling?

ANN

Oh my 10-20 years - I'd gone insane!!! Kudos to you guys then, makes my month seem not bad at all.

I still have the same problems which brought me to the nuero. Left sided numbness/tingling. I'm dealing with it but it stinks. Touching paper and clothes feels weird on my hand sensory wise-which I don't think my husband fully understands that when comming to laundry. I also think I have l'hermittes(?), I noticed that Sunday. When I look chin to chest I get a sensation done my left side which is my effected side- like a little zing. Positive note I'm a righty so that's good I guess.

Like I said I know in my gut I have it- I'm pretty good with them. I have a 5 and 6 year old. Do you tell your children? In a child friendly way, both my children have anxiety so I think explaining is better than not? I saw s'mylen on ms.org and that looked awesome.


As I was typing the doc called brain MRI this Friday night- funny when they want things done ASAP they can :)

Hi tj6306,

Not all of us went that long before being diagnosed :) I was diagnosed 28 years ago and it took 3 months for a diagnosis (PCP to Neuro to testing to diagnosis).

Lhermittes is not unique to MS, there are other causes. However, when related to MS Lhermittes is caused by lesion(s) on the cervical spinal cord. As noted you do have one lesion in that location.

Lhermittes: bending head down and experiencing abnormal sensations (vibrations/buzzing, electrical shocks). These sensations last only seconds but can be repeated each time the head is bend down.

I have had Lhermittes for 28 years and experience vibrations/buzzing from the waist down when looking down.

It only took a week for me to get my diagnosis and I was totally gobsmacked. I thought I just needed new glasses. You could have knocked me over with a feather. I'm not sure what's worse. :(

I was really fast between neuro appointment, to MRI to diagnosis - my kids were 5 and 8 at the time. I think you have to explain it to them (at least to some degree) because kids are incredibly perceptive and if you don't, they will start getting scared and imagine all sorts of terrible things - like that they are going to lose you.

I wouldn't drop it on them until I had a firm diagnosis, but it wouldn't hurt to say that your body isn't working quite the way you are expecting it to, and your doctor wants some pictures of your brain to work out why.

As you have already found, there are some great publications around from the MS society - and you will also get really valuable insights on here from those who have walked this path before.

Good luck with your tests, knowing what you are dealing with will make your fight (and your acceptance) much easier. But you know what else? You mentioned that your kids have anxiety - that must really be playing on your mind, but you will be amazed how resilient kids really are when the chips are down.

Hugs, and I hope all goes well and you get some answers

So I had my brain MRI and the doc called me ASAP today so he said there are some nonspecific white spots on your brain so I cant so for sure MS. If it is it is it's in it's early stages. So he wants to treat my symptoms and talk to me about where we go from here.He said he is going to give me steroids- my right hand is now tingly on my fingertips. So we will see. I will post my results from my MRI- I still think its MS but I will wait to see what he says tomorrow.


IMPRESSION: There are couple of small nonspecific right frontal T2 FLAIR white matter hyperintensities. This is not typical or pathognomonic of MS but may be consistent with the possibility. Further clinical evaluation is suggested.

Thanks again I will keep posted tomorrow!! Just keep chugging along right?!?!

Thanks TJ.

I hope you get answers tomorrow but treating symptoms until the diagnosis reveals itself is reasonable.

Best to you,
ANN

Treating the symptoms is a good idea at this point. Has your dr. run any other testing for other things that may be causing this? You may have posted that and I missed it.:o

Lesions can be caused by many things beside MS including migraines (which can also cause neurological symptoms). I hope that they figure this out soon for you so that you have a name to go with your symptoms. Hang in there and let us know how you are doing!:hug:

TJ, thanks for letting us know. At least you Neuro is working on it and
not dismissing you, as if you're nuts.:Hum:

Hi TJ, glad you are getting quick responses from your doc! One thing you might want to do if you have not already is to go read the McDonald Criteria for MS (http://en.wikipedia.org/wiki/McDonald_criteria).

When I had an episode of hearing loss and got an MRI, they found a couple of lesions. When I saw the neurologist, she told me that I didn't have enough lesions or the right kind of lesions for her to call it MS and ordered annual checkup visits with her and followup MRIs. After two years with no further symptoms or issues, I was pretty convinced that she had told me that what I had didn't look like MS. Then I got another MRI and there were more lesions. Suddenly she was telling me that now she could call it MS and started talking to me about starting on a disease modifying drug.

In hindsight and knowing what the McDonald Criteria are now, I can recognize that what she was doing was following that criteria, which required new lesions or new clinical symptoms separate from my original episode by at least 6 months. So when new lesions showed up 2 years later, it gave her what she needed to meet the criteria and justify the diagnosis. I am not saying your case is the same, but reading what the criteria are might help you better understand what the doctor is telling you so that you hopefully aren't taken by surprise the way I was.

Very good post TXBatman! I had lesions but was not dx until 3 years later. I didn't have clinical symptoms with the exception of what we now know as the hug and some tremors. The neuro didn't want to dx me at that time. She wanted to wait and see before making that dx. Once the other symptoms started happening, I still only received a benign MS dx. A few months later more symptoms and lesions showed up and I was officially dx. In the beginning, I did not fit the MacDonald criteria and even when I lost the ability to walk, I still didn't fit. Finally, between numbness, losing control of my bladder, having balance issues and walking issues again, etc. I fit the criteria and was dx.

Ditto Txbatman…
my neuro still wonders when looking at the MRIs…since they're not in typical MS places in the brain. But combined with the symptoms, he's sure of it.

Hope you get more info...:hug:

Let us know…we're a nosy bunch;)

So I'm back! So much to take in let me tell ya!!! So for starters he wants me to do iv steroids for 5 days ASAP to help with my cervical spine lesion- he thinks its a flair? The Iv steroids is scary to me as it was new and unfamiliar to me.

Onto the ms- well I only have 2 lesions on my brain and the one on my cervical spine- so he said he would need 7 lesions on my brain to dx with ms- BUT a big but he is concerned about the one my spine esp its the one giving me the symptons and the location. So even though I do not meet the criteria he would like to treat me as if I had ms and spinal puncture and keep watching to see if I get new lesions. He said he would rather treat and it not be ms but wouldn't feel comfortable not treating a cervical lesion and it be more.

So all in all I say I am pretty happy. Me being **** as I am I would like a definite yes you have this or no you don't- but I'm getting that this isn't going to happen soon. :)

Now onto research meds- from the little reading I have done copaxone seems to the one people like the most because of the lack of s/e- my doc suggested pill form tecfidera if insurance approves it.

Thanks so much for the support I appricate it all from the bottom of my heart- I needed a place for my crazy head to vent! So thank you! :)

TJ - I sort of want to say "congratulations?" Mostly because you have answers, treatment and a so good doc! That's a lot.

Sorry about the possible/probable MS.

Three to five days of IV steroids are the usual treatment for a flair in MS.

It seems you are in good hands - except for the Tecfidera part. I wouldn't want that but everyone is different.

ANN

Sounds like you have a good and proactive doc. Get ready, because the steroids can make you feel like crap all on their own. But they should help with the other problems by the time you finish them. As for the meds, I don't know much about tecfidera, but I was on Copaxone for several years. I had a good experience with it and didn't want to change, but I had an MRI show more lesions showing up, so doc recommended changing to Rebif. I have been fine on Rebif other than hating the fever and chills I get if I forget to take an advil with it.

One thing to note however is that most insurance companies are changing the way they treat Rebif because it is very expensive, even relative to the other MS meds that are expensive by themselves. My insurance company (United) is not only charging a 20% copay this year (which is common for most of the biological meds for MS), starting January 1st, they are making Rebif a tier 3 biological, which for me means a 25% copay, AND they won't accept direct payment using the manufacturer's copay assistance program. So I will be paying approximately $1125 out of pocket each month next year and then submitting that to the copay assistance program for reimbursement. The moral of my long-winded whining is that before you choose a med to try, make sure you understand how your insurance company classifies it and what they will charge you for a copay. Also be aware that most of the manufacturers do have a copay assistance program to help if you can't afford it. I hate the idea of making healthcare decisions based on some arbitrary cost guidelines from an insurance company, but it is what it is. FWIW, United is not treating Copaxone, Avonex, or Betaseron the same way...just Rebif for some reason.

It sounds as if your neuro is proactive, which is positive.

I have had IVSM…my neuro demands that his patients have no more than 2500mg of sodium in the diet the week of being on it…it keeps weight gain down.
It does alleviate the symptoms for a time…but it's no miracle.

I was on Copaxone for 4.5 years. I'm off of it for now, and in a few months will discuss whether or not to go back on or try something else.
It is a daily injection; however, sometime this year (it's hoped) they will reduce the number of injections to 2-3 per week.
It's the mildest DMD with the fewest side effects. Many of us who have "mild" MS have been put on it.

If you do have a lumbar puncture, drink plenty of liquids the day before. Then, lie down the rest of the day following the procedure except for bathroom and meal breaks. And drink plenty of caffeine afterwards too. This was recommended here to me by the wonderful people here, and I avoided the headache that can follow the procedure.

Keep a journal of symptoms and questions for your doctor. But, most importantly, try your best to live life and not let MS or whatever this is to take over.

Keep us informed!! We have plenty of info and hugs here:hug: