Start treatment before 2nd opinion?

[ovifan08]

Hello, I am a 30 year old Male and was just diagnosed with MS this morning. I am a little confused at the diagnosis however. Here is my story. On July first, i had some numbness around my tailbone and groin area. The next day I was having tingling in both of my feet. I went to the ER and had MRI's of my spine done, lumbar and thorax(i think). It showed a little inflammation around a central nerve root. I was sent home and was told to see a Neurologist.

I still had full movement and motor skills, it was just sensory. I could still feel if something was touching me, it just didn't feel normal. The Neurologist went through testing in his office, reviewed the MRI's again and put me on 18 days of Prednisone steroids after telling me the body numbness was just anxiety. Over the next few days i started getting tingling in the last 3 fingers on both hands. The tingling in my feet and numbness throughout my body went away towards the end of those 18 days, but the finger tingling was still there.

I then got MRI's done of the cervical spine (neck) and the brain. There was 1 lesion that showed up in the spinal cord on my cervical spine scan, and 1 lesion showed up on the left side of my brain. The Neurologist immediately jumped to MS, even though i haven't had my Lumbar puncture yet. That concerned me a little. I have been doing a lot of research about Lyme and different things, but when i asked questions i was immediately shot down and was told, "no, its MS". He even shot down the idea of trying lyme antibiotics to see if anything changes.

Fast forward to today (8/7), the tingling in my fingers is 99% gone, and i visited the neuro again to get my Lumbar puncture results. He said the tests from the lumbar puncture show normal and no issues, but he is still comfortable in making the MS diagnosis. He said i most likely have RRMS, even though this was my first episode. I am concerned because it seems as if MS was the first place he went, and didn't change his mind even though the lumbar puncture came back fine. He gave me information on the injections and told me to come back in 2 weeks after i decide which one i want to start.

I scheduled a 2nd opinion with a Dr that serves on MS boards and has done extensive studies, but i am unable to see him until 2 months from today (10/8). My question is should i start the MS injections before I get my 2nd opinion? Right now, i have no numbness and tingling over my body, but do get a weird sensation when looking down sometimes.....almost a vibration feeling in my legs and feet. I am guessing this is due to the lesion in the spinal cord. If it is MS, and there is only 1 lesion on the brain, i'm hoping that means i caught it early. Any input is helpful. Thanks in advance!

[andrew41784]

Hello,

I am sorry to hear of your neuro's suspicions.  I was diagnosed 10 years ago with RRMS.  My initial symptoms were similar... I had numbness in my hips and shortly followed by numbness in my fingers.  A neurologist suspected MS after my first MRI when it showed one lesion on my cervical scan and sent me to a MS specialist where I got a definitive diagnosis without an LP.  In addition, I had a similar electric sensation when I bent my head down, which is a characteristic of MS known as Lherrmite's sign.  I think based on that and my scans, my neuro was comfortable with their diagnosis.

I honestly hope there is another explanation for your symptoms.  In many cases an LP can diagnose MS, but in 5-10% of people with MS, their results appear normal.  I advise a second opinion.  This is a big diagnosis, the medication is expensive and annoying if you take an injectable.  If this is a true diagnosis, however, there has never been a more exciting time for MS research and there are so many treatments in the current pipeline that are more effective and hassle-free.  And, although I have had MS, in that time I was able to get a B.S. and Master's, and I work a full time job.  I have had some issues with relapses but have never felt that I had to surrender to this disease.

A word of caution: get that second opinion fast.  If it is MS, the faster you begin a therapy, the more promising the course of the disease will be.

I wish you the best.  Stay positive.

Regards,
Andrew

[Ricobord]

Your diagnosis does seem quick.  I don't blame you for wanting a second opinion.

Spinal Lyme tests are useless when negative as many patients don't have spirochetes or antibodies in their CSF. (I tested negative in my CSF and I actually have Lyme that has mimiced MS.)  But if you had Lyme, the prednisone would have made you worse. I was given prednisone and after a shot, I ended up 4 days later in the ER with major breathing problems. They gave me 4 more days of orals and I felt horrible by day 4. I went on a steady downhill cascade of symptoms after that.

If you feel better after taking steroids, it is unlikely to be Lyme, as steroids suppress the immune system, allowing the infection to get worse.

Sorry about your ongoing symptoms. I know this must be an uncertain time. Trust your gut and take it one step at a time.

[sllowe]

Hi Ovifan,

Welcome, welcome! Glad you found us. I too feel it's a personal choice. While this doc may know MS so well, is willing to call it as he sees it and treat it too - a second opinion is something many of us have done. After diagnosis, my doctor actually recommended it (little did he know I already had one line up).

So, no harm, no foul I say. Couple of months shouldn't make a difference in your treatment (if that is what you are concerned with). You can just ask the dx'ing neuro's office to hold off on the med until you decide it's the one you want to take - that ought to give you a couple months grace period to wrap your head around all this.

Hope to see you around.
-Shell

[Lulu54]

18 days of prednisone for numbness caused by anxiety? that makes absolutely no sense.  You may very well have MS, but delaying the start of treatment shouldn't make a huge difference. I understand your hesitation to put your faith in this dcotr and the second opinoin is a great idea.  Be sure to call them back and ask to be put on the cancellation list if an appt opens sooner - that happens quite often.

I'm sorry you are dealing with all this, but you've gotten some good advice above.  And we are more than willing to answer your questions and hopefully lend some guidance to your search.  I'm glad you found us here and I hope we see you around again.

be well,
Lulu

[ovifan08]

Thanks Carol!

[wiggles94]

So sorry for what you are going through.

I am a gray area patient - dx pretty quickly with MS - only after all other things ruled out - went on Rebif for one year, but now off since second opinion with MS specialist wasn't so sure about MS - now possible MS - being followed closely by him now. Have been stable off Rebif for a while.

That said - this is a very tricky disease - and only you can decide what is right for you .  I thought that the advice Jen gave you was good.  AND you need a good doc who will treat you - If you do have MS - what works for one may not for another -

Do your research about all the meds - get going on getting set up to take them if that's what you feel is right, and in the meantime seek out a second opinion.

If you have RRMS (relapsing remitting MS) it's normal for sx to come and go - you can be stable and no symptoms for a while - and then can have flares - that go away - that's why it's relapsing remitting MS.

Most important is to work with someone whom you trust - who will listen to you and help you look at all options/possibilities.

I wish you the best of luck in your journey.
Carol

[ovifan08]

Thank you very much for the reply!  The PCR for lyme was included in the lumbar puncture testing.  Also thanks for the tip on the meds.  I didn't realize it would take a month or so before you could get started anyway.  I am trying to stay calm and keep my anxiety low, but part of me is worried that if i wait for treatment that something could happen in that 2 month period.

[jenphilly]

This is a totally personal choice only you can make...   it does seem the doctor jumped to MS, usually its a laundry list of maybes and eliminating things before MS is the only thing that answers everything.  Having a negative LP doesn't rule out MS, lots of MSers with normal LPs....  

I can only share with you that I have experienced pretty much all your symptoms and my first neuro was positive it was lyme and lyme explained all my symptoms until they became a bit more pronounced, then it was a bit over the top for lyme and the LP was done which cleared up that there was no lyme DNA in my body but I did have the o-bands.  Did the spinal tap include the PCR for lyme?   Hopefully they ran that panel as well, its much more accurate then serum (blood) tests...  

Again, this is only something that you can make the decision about, only you can decide.  Keep in mind that even if you tell your doctor you want to start on copaxone, rebif, etc., it will take you better part of a month to get thru all the insurance headaches and such.  You can kill two birds with one stone.....  Read up on all the DMDs and make your choice of which you will want to start if MS is confirmed.   Get the process underway for approval and having your first round of meds sent out.  Then wait until your second opinion appointment before your first shot.  If it turns out the specialist says no to MS, you haven't taken any meds you don't need, but if he confirms MS, then you're set to start on the spot....  

Going for two months without meds is not a long time or something to make you stress about not starting today.   You have time to make a decision.  I was diagnosed in November but didn't like my first neuro, went to another neuro (whom I adore) and she confirmed MS and I took my first shot on January 6th.  So, I went about 45 days or so...  nothing happened, no progression or such.

There are so many diseases that mimic MS and so many diseases that MS mimics....  I totally understand your hesitation.   Biggest thing, don't stress...  take these two months and educate yourself, learn everything you can about MS or other possibilities...  keep track fo what you do, what you eat, what the weather is and such, see if there is a pattern for when you have a bad day.   You might find a trigger that you can control (for example, for me its gluten and lactose).   Do reading on supplements, you might decide to try some supplements that will add to your regimen once you have a confirmed diagnosis and start a DMD.  

Think positive.....  if you have MS, your lesions are few, you are getting on top of things quick instead of doing what many people do (myself included) and ignore those little problems and put off going to the doctors.  They think I had MS about 5 years before I finally could not ignore things anymroe...  I was a single mom, did not have time to be sick, so just pushed thru the early 'minor' symptoms....    You've done great getting answers and looking for more and looking for someone with more experience.

keep posting...  MS or not, everyone here is great and supportive.  You're not alone while you're trying to figure this all out!!

Jen