Demyelinating Disease

[sunshine8]

I am a 33 year old female and a newbie to the forum world. Last August I was running and my legs gave out all of a sudden. I fell, went to the ER, and they did a CT where they discovered an abnormality. They did an MRI that showed Demyelinating disease that the radiologist said could be indicative of MS. My PCP sent me to a neurolo who noticed a slight left hand tremor, & some minor balance issues. The spinal tap, VEP and blood work all came back neg for MS, Lupus, Lyme, etc. He was still thinking that it was MS, possibly early onset, and sent me to an MS specialist. She said that it was probobly a one time event & to get a 2nd MRI at the 6 month mark.. The 2nd MRI on the same machine showed new lesions & that some of the existing ones had grown. I went back to see the specialist & she still said that because everything else was negative & I was not showing major symptoms that she could rule out MS. I have talked with my main Neruo & he still thinks it is MS, but wants to wait for more symptoms to appear. I feel like I am caught between two different opinions. I have told both that I have been having dizzy spells since before the accident.I even went to an ENT for a full workup that didn't discover anything.  They last only a few minutes & I have described it as looking at the world through a kaleidiscope. Also, the left hand tremor gets worse when I am lifting something. I have also said that I am more fatigued than normal, and that being hot makes everything worse. I generally said that since last spring I just feel off, but it is hard to really explain. It has been very frustrating, and I am really just looking for advice. My regular neuro says that it can be MS with a negative spinal tap. Is that true?

[slightlybroken]

With the already change in your brain MRI, you SHOULD have a c-spine and t-spine MRI. Lesions in MS can show up in these places. I agree with Elaine about seeing a different MS neuro but only bringing test results so the new MS neuro can form their own opinion.

I would also recommend making a time-line of your SX. Keep track of your SX and how long they last. Sometimes this helps in the DX. An LP and VEP should help with the DX process of MS. Just because your results are negative doesn't mean that MS is excluded. It sounds to me that you have a positive MRI and that MRI changed which is another positive marker. Basing whether or not you have MS on an LP and a VEP is ridiculous to say the least especially when you are having SX and a positive MRI. But unfortunately this happens.

I know it's frustrating. A lot of us here are in the same boat. Please know that there is a lot of wonderful people in this forum with very good advice. I have learned a lot since I've joined and I'm continuing to learn.
Take Care and Welcome

[monotreme]

Hi Sunshine,
   Can you go to a different MS specialist?  Unfortunately, from reading MS society publications, MS neuros all have different opinions on whether or not early MS should be treated.   Your current MS specialist may be one of those who is against early intervention.

  You really need another opinion from a second MS specialist.  And only take your test results.  I would recommend against taking the opinion / report from the first MS specialist.  Then you pit one doctor against another and the second MS neuro may not want to intervene.  Your best chance is going in with only test results.

  My husband was left to get worse and I would not recommend this route.  Good Luck.
  Elaine

[sunshine8]

Thanks for all the replies!  I appreciate all the advice. It has been so frustrating, and I now know that unfortunately it happens to a lot of people.  They have never done a spine MRI, only head with and without contrast. I have had two MRI's now, 6 months apart.  I will post my MRI results tomorrow and maybe someone can help me decipher them.  I feel like I am now a knowledgeable patient, but it still isn't getting me to a diagnosis. My current neuro is unwilling to start MS treatment, especially since the MS specialist that he sent me too dismissed the idea that this could be MS after 5 minutes. She did say that the MRI results were classical MS in nature, but the fact that my spinal tap and VEP were normal made her "feel" that it wasn't MS. They made me do an EEG the other day and I go back to see my regular neuro next Monday. It is all just so confusing., It helps knowing that other people are out there who are also in limbo, and still more others who have been here. Thanks!

[cjacks]

Sunshine

I can hear your concern and frustration .  Getting a dx. of any kind can often take a long time . Stick around here , there are many nice , knowledgeable people on this forum.  I read your other posts ,  and see you did not have many responses, that happens sometimes , but please hang in and you will get much satisfaction here .  I don't know what would have happened or where I would be now if I hadn't found this place last fall.

Read as much as you can . There is a box at the top of the page , Health Pages, go there and read .  And ask more questions .

You  should get another opinion .  I can't say for sure , but my guess is that lesions that have increased in number and size in six months is not normal , for any age . You already know that something is not right .  You really need to get to the bottom of this. Find a doc who will assist you.

You might want to  post your MRI results here ..

Good luck ,  and WELCOME  .  You are now officially a member of the  Limbo Land community   :)      

Jo

[Heather3418]

I'm sorry this post slipped by me.  Welcome to the MS Forum.  You've come to the right place for support, compassion and learning.  "SlighlyBroken" answered your questions correctly.  Her information is right on.

Perhaps if you read some of the vast information on this website and the website the "broken" gave you, you can return to the Forum with any further questions you may have.  I agree with her, that you seem to be in the early stages of MS and if a spinal MRI has not been done, with and without contrast dye, that it should be done.  I would suspect that if you have had an LP, then you probably have had a spinal MRI.  If you have, what did it show.

I know that it's hard to wait for "things to get worse" before the doctors want to decide on any treatment.  You may need to tell them, if they are highly suscipious of MS, that MS responds better, when treated early on in the disease.  You can accomplish this with one of the MS Disease Modifying Drugs.  Your Neuro can tell you more about them.

Even though your spinal tap was negative, MS is ALWAYS active, whether you have more symptoms or not.  This is another reason to get started on one of the DMD's if MS is highly suspected.  There is nothing to gain from waiting until the disease causes permanent problems.  You can tell your doctor that you heard this from someone that has been diagnosed with MS for 13 years and see if he agrees.

The more knowledgeable you are about MS when you have your appointments with your Neuro, the more likely he is to listen to your concerns and your need to possibly get started on one of the DMD's that are available.  It's the only thing we all have right now, to hopefully slow this disease progression, so we can live as close to a normal life as possible.  Waiting for more damage to occur, serves no purpose, than to make the patient suffer needlessly.

Please feel free to post with any questions and concerns that you may have.  We are with you every step of the way.  Once you join this Foru, you are automatically considered family.  You will definitely see that in the responses you get.  This is one tight, loving group of fine people.

Remember Sunshine, we are now ALL behind you, every step of the way and more than willing to help in any way that we can.

Best Wishes,
Heather  

[debj52]

bump

[slightlybroken]

Yes you can have a negative spinal tap and still have MS especially if it's early in the disease. Have you had an MRI of the t-spine and c-spine? You need to have this done if you have not had this done yet. Try to get your spine done on a good  MRI machine because that does make a difference. When they performed your MRIs did they do it with & without contrast? Did you have any enhancing lesions? Sorry, that I'm asking so many questions.

For them to DX you with MS they have to follow the McDonald Criteria. Here's a good site for MS information and a quick explaination of the criteria.

http://www.mult-sclerosis.org/DiagnosticCriteria.html

Also, you might want to check out Quix's Journal on what it took to get her DX. It really open your eyes to things.

I hope this helps.