MRI suggest MS- now spinal- Question
 

Hi all,
So the MRI (non-contract) result was "one little spot right side unusual for my age", that's actually what my doctor said. Now of course I have tons of questions but couldn't think to ask then.
***UPDATE: MRI report says "Minimal nonspecific periventricular T2 white matter hyperintensities seen in the right frontal lobe bordering the frontal horn the right lateral ventricle, which is unusual for age" (I'm 44)***

Next thing doctor said spinal tap to confirm MS dx. I'm not really loving the idea of spinal and read that 20% of MS patient never test positive for the proteins.

My question is, wouldn't a MRI with contract be helpful? Could they tell if it was a tumor vs. ms lesion with a contract MRI?

My doctor also said there was "narrowing of cervical base, which could be causing the arm tingling". Does that mean I need to see a chiropractor or is that related to MS?? I hate to sound so naive about this, but honestly I am. This is all so new to me.

My PCP is going to refer me...should I be asking for some kind of specialist?
There's so much conflicting info out there, I don't know what is fact anymore. Too much internet doctoring.:confused:

Thanks for your advise.

An MRI with contrast will be helpful in the diagnosing process.

I'm not sure about the narrowing being caused by MS. I haven't heard that before but I'm not an expert on all of this either.

I have never had a spinal tap done. I was diagnosed without it. Others on here can share their experiences with it.

My neurologist is not an MS specialist so to speak. He specializes in MS as well as other neurological conditions such as strokes. In otherwords, he is well versed in MS and goes to all sorts of conferences and stuff for MS but he also sees patients that don't have MS. I did go to and was diagnosed by an MS specialist and was in a study for a while with a nationally know MS specialist. (I just loved him. He was great.) But, I had to switch neurologists and ended up with the one I have now. He came highly recommended by my MS specialist as well as some others in the neurology field that I know.

Consulting Dr. Google, Dr. Yahoo, etc., basically Dr. Internet, can be a bad thing. I saw a thing on Pinterest that said something to the effect of searching your symptoms on the internet can make it seem like you are going to die of some rare disease within the next 24 hours when all you have is a common cold. It's true. I think consulting Dr. Internet has created a lot of unnecessary health anxiety in many people. Just be careful which sites you are going to. I highly recommend this site to any MS patient whether a newbie or a "seasoned" MSer. It is so informative and so thourough. http://my-ms.org/ms.htm You can search symptoms, learn about how the nervous system works, anatomy, treatments, etc. It is an amazing site.

Hang in there Elle! We'll all help you through this as we all have been there before. :hug:

My neuro always orders MRIs with contrast...but some insurance cos don't pay for this, and some docs don't want to order them for some reason unknown to me...

I had a spinal tap. It was uncomfortable, and the good friends here and at other sites gave me great advice about lying flat afterwards for the rest of the day and drinking caffeine to avoid the dreaded LP headache.
My LP did not show any proteins, but symptoms later gave me the MS dx...if the neuro feels you are in a flare, then he would order the LP to confirm it.

Keep your symptom journal up to date, but don't forget to live life fully...

And we are here to help, give info/advice, and hugs:hug::hug:

I would definitely have you PCP refer you to a MS wise Neurologist. The LP may
or may not be necessary, to be determined by your Neuro. There are other
clinical tests to determine MS or Not, mostly by eliminating other illnesses.

Let us know what your Neuro says and take a deep breath....let it out....:hug:

What other things could cause lesions?
 

Now that I have a copy of the MRI report, although it doesn't say one lesion that is what my PCP said. The report says "Minimal nonspecific periventricular T2 white matter hyperintensities". In any case, I found online a "McDonald's" MS dx that seemed to require more than one lesion in order to confirm MS dx.

Is there anything else that is common that could cause lesions?

I did have a ANA blood test to ruled out Lupus, Lyme disease, etc.

Are white matter hyperintensities ever tumors? And wouldn't something show up in my blood test if it was a tumor?

My MRI of cervical spine showed:
- Mild degenerative spondylosis of the cervical spine extending from C4-5 thru C6-7
and
- Mild spinal canal stenosis at C5-6 and C6-7

there isn't any mention of lesions. Couldn't all that cause my arm tingling and electrical shocks?

Guess I really need to see the neuro, just have so many questions.
Thanks everyone for your advise. Helps to hear from people that have been in the same situation before.

hi elle and welcome to NT,

don't see a chiropractor until you see a neuro.
i had a spinal and it went well.
it can determine better an MS dx (diagnosis) but may not always come up +.

get a copy of the MRI and a copy of the report. start a medical file on yourself for your own info and for any drs you see down the road. it will be helpful.

try to take one thing at a time. one test, one dr visit etc. try not to think too far ahead. and, try to take someone with you to the visit for a second set of ears.

all the Q's you're thinking of, write them down.
please keep in touch with us. many of us have been down your road and can help with support and info.

Thank you so helpful
 

Thanks Judy, so helpful. I've learned so much more from kind people on this site than any of my doctor's visits.

I finally told a family member that is a physical therapist. She highly recommended that I ask for other test before the spinal. She said there are lots of risk and may not confirm anything. She recommend I get another MRI but with contrast this time.

I'm trying not to think about it too much, which sometimes is easier said than done. Maybe it's denial but I keep thinking it must be some other reason other than MS. I've had migraines this last year pretty bad and maybe that is the cause of the lesion? maybe I'm just wishing, who knows. I'll feel better after talking to neuro since I don't have a lot of faith in my PCP.

I'm just glad I found this site!!

First of all, I hope that you get healthy soon :)
2nd, I was the biggest chicken about having an LP done... I did it just few weeks ago and lemme tell you... a paper cut hurts more (given that your neuro knows what he's doing)

3rd, no matter what the results is, by modifying your diet and life style you can control your symptoms. I say this because it worked for me... in the mean time STOP consuming ANY gluten/dairy products!


best of luck,


C

http://www.dizziness-and-balance.com...entral/pvm.htm

If that helps?


I had two LPs, the first neuro screwed up the first one, the second was negative for everything. I was offered a 3rd by the MS specialist, but after repeat mri's and other testing by him? He gave me a diagnosis of PPMS, and said that even if the 3rd LP would have been negative again? He wouldn't change his DX, there was enough other evidence for it, so I passed on LP #3.

I felt my symptoms were consistent with PPMS and so did he.

I am not a neurologist or a radiologist, or a doctor of any kind, so my opinion is worth exactly what you are paying for it. But with that said, let me mention a few things that stick out to me in that brief description versus what your doctor said to you.

First is that the word hyperintensities in the report is plural, which is a fancy word, but being plural, it means to me that you have more than one spot visible on the scan. Your doctor may have just been referring to the one around the ventircle horn, or may have misread the report. Or the radiologist may have misspoke and there is only one spot. But reading what was written indicates more than one...which becomes more important when you go read the McDonald Diagnostic Criteria for MS. The number of spots (or lesions as they are called) and their locations is very important for diagnostic purposes, which is why a neurologist will typically want to see the actual scans and not just the radiologists report.

The second thought is that the periventricular white matter is a very common place for such spots to show up in people with MS. My neurologist specifically called out the location of one of mine around the horns of the ventricle as being "typical" for MS type lesions. That is not to say that you have MS. Just that given that location of lesion, your symptoms, and your age, MS is one of the front-runners as far as possible diagnoses.

Third, the "unusual for age" comment is just radiologist speak for "it isn't something I would expect to see in somebody in this age group". As we age, there are certain types of changes to our brains that are visible to radiologists on MRI scans. They will typicaly discount certain things by saying "blah blah is seen in this part of the brain, typical for this age group". So when they are calling out something as being unusual for the age, they are just pointing out that it isn't one of the things they would expect to see.

Lastly, regarding the LP. Some people have an easy flawless experience with them, some don't. I had one attempt that was tremedously painful and unsuccessful, and the second attempt the following morning was easy and nearly painless. My recovery was a whole other story. But long story short, mine was negative. I still have a dx of MS based on other things. I have heard it said that the bands may only show up in the spinal fluid if you have an active lesion at the time of the test. That kind of lesion will also show up on an MRI with contrast.

My advice would be to get a referral from your PCP to a good neurologist first, bring all your test results and a CD with your MRI scan on it to them, and let them decide what to do next. My guess is that the first thing they will want is an MRI with contrast, then may send you for the LP based on the result. The neurologist can also tell you what the narrowing at the base of the cervical space is about and whether it has any bearing on your symptoms.

Hi TXBatman,
Thank you for your help. I did notice the report said "hyperintensities"...as in plural and also questioned if that meant more than one lesion. My doctor specifically said "one spot" but she could have been referring to one "area" instead of one lesion. I have wondered all the same things as you mentioned. There wasn't any reference to the size of the "hyperintensities", is that common?

I have also thought about the location issue, since reading more about MS lesions, it does seem to be a very common location.

It's weird because yesterday I felt good and just couldn't imagine having MS, but today I feel like a bus hit me. I'm so fatigued, even after double the caffeine as normal day. My thigh is twitchy, my stupid eyelid is droopy, and my mood sucks. Sorry I shouldn't be whiny.

I really do appreciate all the information. I'll have to start looking closer for gluten free. I don't really eat much dairy. Maybe once or twice a week, do you eliminate it completely?

I was wondering about sx, do they last a long time in the same spot. I mean for me it like a few minutes my arms hurts then it stops, then a few minutes my thigh twitches then stops, then it my hand, then back to my thigh. The longest single issue lasted a few hours but then stops. Is that normal?

Thanks again

This is my concern over the LP, why go through the possible pain and risk just to prove you have it. I feel like if I have MS, I have it, and it won't matter if one test says it or not. I'm not really afraid of needles or anything like that although I don't love the idea on them going into my spin but I've had two c-sections so it wouldn't be the first time. My issue is more with the risk.

My question is so what if the neuro confirms MS, then what happens? I've been wondering "IF" I have it, I haven't really looked into what happens next, lol.

Great post TXTBatman!!!

Elle - The spondylosis and stenosis could definitely cause some numbness and tingling in your arms. You asked about common reasons for lesions. I don't know the statistics but I know that things like a virus or migraine could cause lesions. If you're looking for something mild as the cause. But, the only way you are going to know is by seeing a good neurologist. I agree that you may not need a LP. Like I mentioned, I was dx without an LP.

Hang in there!!! We are all here to help you through this.:hug:

Neuro appoint on Thurs
 

My PCP set up the neuro appointment, it's next week on thursday, going to try to put it out of mind (lol) until then.

I'm a little nervous as I have to be outside most of the day today. I haven't spent much time outside since the last time that I had so much trouble walking. It's suppose to be in the mid 80's and humid. It's a work thing that will have me outside for at least 5-6 hours. I've gained weight since last summer so don't dare wear shorts, instead I'll be melting in my jeans. Hope! Hope all goes ok.

Ice water, ice packs, and wearing thin breathable clothing all help. Stay in the shade if you can. Enjoy your event.:hug:

It can take a lot to get diagnosed sometimes. Not everyone is lucky and gets dx with just an MRI. I had the MRI and it had all the bells and whistles for MS, but doc still sent me off for spinal. It came back negative. Fast forward 20yrs later, I did another spinal and it came back positive, nice little O-bands you have in your spinal fluid with MS. Thing Im getting at is sometimes you have to do what you have to do to get that dx. I had gone thru every test there is out there for my initial dx 20yrs prior, but because I hadn't kept up with any neurologist over the years, that new neuro put me thru all the tests again like I was new to it, just to make sure. I hated doing it, but I did it. Better to know than not. Good luck to you, and we're all here for you!

I was fairly certain after some research that I did that I had PPMS, after being finally told that it now looks like my mystery illness looks like a neurological problem.

I had also looked at the recommended treatment, none? I could easily accept that, it seemed better than the limited options offered give the risks associated with them.

It will be a lot harder and more costly to get insurance after a diagnosis of MS? Some are willing to try anything? I like to see a 50/50 chance of help at least.

I come from the other view point of the spinal tap. Done by some one who knows what they are doing, U had no problems whatsoever. My first LP was when I was in a hypertensive crisis, had nothing to do with MS. My head was in such pain with the hypertension I wouldn't have known if they had cut my arm off. Next day we got up and traveled to Florida to Disney World.

My second one was for my MS. It was done in the radiology department of the hospital. He did it under the guidance of xray so he could know exactly where to put the needle. No mistakes when you do it that way. Next one was when I saw a MS specialist and he wanted to re-run tests. This time was done the same way but they had radiology students or maybe it was premed students, can't remember watching my bare behind!!!! Another piece of cake.

Everyone is different when it comes to any experience with the MS testing, treatments, symptoms, etc because we all have lesions in different places.

It turn out fine. We had rain at first that kept us indoors for a while and although I did get warm later into the night, I was never super hot or in direct sun. I felt ok. I was careful going up & down wet stairs after the rain, but no problems. Maybe I was just busy and distracted, but didn't seem to have any trouble. I was so happy!! and it was a very long night.