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    Start treatment before 2nd opinion?

    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!


    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    I'm no doctor, don't play one on TV...blah, blah, blah

    BUT, if it was me, I'd wait for a second opinion, especially since you have an appt with an MS specialist. (in my neck of the woods it takes 6 months to get an appt. with the MS specialist, so 2 months is really not that long.)

    And the truth about starting a DMD before then, well most DMDs take time before they really kick in, so the two months you're without DMD treatment is really not significant.

    But that's just my opinion.

    P.S. I sort of got a kick of how this guy jumped from anxiety to MS in such a short span of time. Also let me ask you this...how long did the neuro exam take. If it was 5 or 10 minutes, not good, definitely seek a second opinion. A good neuro exam should take about 30 minutes.

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      #3
      That is why I am confused. He made the jump to MS so quickly, even before the lumbar puncture was performed. If it is MS, i'd like to be treated ASAP, but if it is something else I don't want to take meds for MS. I'm torn! To answer your question about the Neuro exam, it was only about 5-10 minutes. It was basically follow my finger with your eyes, squeeze my fingers, poking with a pen saying "can you feel that?", checking reflexes, and having me walk on my heels and tip toes. All those tests were fine, it was mainly sensory. The only symptoms i have still is the vibration when looking down, which i found out is called lhermitte's sign.

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        #4
        I'd wait to see a specialist. My friend was told he had MS by a doctor and when he went to an MS doc, he said that it was definately not MS. As Redwings mentioned in another post, some MS meds can even be harmful in other diseases that may look like MS aand in any case, they're serious meds and should not be taken lightly.

        Also, you still probably do have anxiety and are worried that you'll fall disabled in the next month or so. It's not likey to happen.

        What you can do in general, is to stop if you smoke and have your Vitamin D levels tested

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          #5
          I would get the 2nd opinion before starting a DMD.

          1) It doesn't sound like your neuro has done the "eliminate all possible alternatives" part very diligently.

          2) All of the DMDs mess with your system in ways that aren't useful (and therefore probably not advisable) for other conditions.

          FYI, it was a little over a year between my initial dx and a confirming 2nd opinion, and many have waited much longer...
          1st sx 11/26/09; Copaxone from 12/1/11 to 7/13/18
          NOT ALL SX ARE MS!

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            #6
            I found the thread. Scroll to Redwing's post about taking meds before a definate diagnosis:

            http://www.msworld.org/forum/showthread.php?t=121980

            Comment


              #7
              I'm not a doctor either but from the experience I have had during the last 10 years I don't trust neurologists more than my regular doctor. I have been to three different neurologists and not one said the same thing except the first one said it was benign and didn't start me on any drugs and since then I just keep getting told I have MS, start the drug therapy and come back in six months. I have never had the drug therapy and have not been back to any of the neurologists.

              My regular doctor takes the time to listen to me and treat any problems I am having. The primary one is depression which he has done a good job helping me with it.

              I would definitely wait to get the second opinion and maybe another neurologist. MS is not something that happens instantly and does take time to make itself known and what would be the best way to approach any drug therapy. MS is a game you will play every day for the rest of your life so just be ready for the pitch it will give you. Sometimes you will have a strike or a ball or maybe get a home run the main object is to just play the game everyday.

              Comment


                #8
                Thanks for the replies everyone. I think BigA nailed it on the head with me having anxiety that if i wait 2 months then something will happen making me worse. Also, i have never smoked weed or cigs in my life. My vitamin D has been low the past few years, but i have been told its not dangerously low. I think i might ask for suppliments just to be safe. From what i have read here and other places, those with higher Vitamin D levels seem to be better off. I also read something that said people taking DMD's do show higher Vitamin D levels than most. And MarkLavelle, your comment about DMDs affecting the system in a negative way for other conditions is what I am afraid of.

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                  #9
                  Your basic instincts are right -on. MS is a '40year disease'. There is probably no reason for rushing to the DMD's. The first thing the doctor needs to do is a very comprehensive evaluation of your condition. To have this done, your clinician should be using he McDonald's criteria.
                  And having MS or not, you still have these unanswered health questions. If it turns out to be MS, you still can't cure it. And I am sorry, but it's true. It sucks, but it's true. I hope you don't have it.
                  But if you do nothing else, get your levels checked for everything you can. All of the hormones, vitamin D and B-12, and everything blood related. You should probably do a sleep study, without solid sleep, your body doesn't regenerate. And you may also consider what food is fueling your body. All of this stuff is what most regular doctors don't check, but they are the same people who have been screwing around with this bloody disease for 150 years and have come up with very little in the way of treatment. One wonders !

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                    #10
                    I would wait since your appointment is in a couple months. My neuro jumped to MS as well but he also conducted several other tests to rule out other possibilities like Lyme, etc.

                    By the way, not many people know that B12 deficiency can cause the same symptoms as MS because B12 helps to create that sheath that covers the nerve. You should have your B12 levels checked. A lot of doctors don't bother to check those levels and I have read countless stories of people being misdiagnosed with MS & Alzheimer's. You can even have your family doctor order the test.
                    Diagnosed: May 2012
                    Medications: Avonex - stopped 12/14
                    Plegridy - starting 12/14

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                      #11
                      I'd get a second opinion. INAD (I'm not a doctor), but MS is hard to diagnose sometimes, so two months is not long to wait.
                      The drugs you get with MS aren't like the drugs you get with cancer.
                      You really can't notice any difference. If anything, you feel worse.
                      As JerryD said, there is no cure, so there's no need to rush.

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                        #12
                        I don't think any of us are Neuros.

                        You're in a tough situation at the moment. I think (and this just my opinion) your current Neuro is seeing MS as the cause of your symtoms based on your MRI results and your physical symtoms.

                        Your decision to hold off for a second opinion is probably sound. You should be aware, though, that new symtoms can develop quickly. Not saying this to shock you, but I lost most of the vision to one eye overnight. When I went to bed it was fine, it was pretty bad by the time I woke up and its stayed bad since. I just want you to understand that MS can be unpredictable like that. If I was already taking my med, would that have slowed the progression enough to save my eyesight? That part is unknown however my med has been very effective for me so I'd have to lean towards yes, it probably could have.

                        In many ways, starting a valid treatment as soon as you can should benefit you so I might want to think this over some more.

                        I'd also recommend that you start to learn what MS is. It isn't like most diseases you may be familiar with. It also isn't the end of the world. If you have it, then you have it. You didn't do anything (or not do anything) to get it. MS just happens to some people and we have to learn to adapt.

                        Again, just my opinion but you may want to use the time before your next appt to take stock of where you're at. Be honest, could your diet be better? I'm not talking about any specific diet, just overall- how well do you eat? Could you be in better condition? How do you handle stress? These are areas you can manage before any more tests or diagnosis and even if you don't have MS, they would be a benefit.

                        You may also want to use this "down time" to look into which meds you would consider taking if your current diagnosis stays valid. You really should get the opinion of one of your doctors but in many ways the choice will be up to you. Look into all of the medicines. All of them have their own strengths and weaknesses. Like the disease itself, the meds for MS can sound very confusing at first. Your first "gut reaction" to what these meds do (and even what they really are) may not seem logical until you better understand what's really going on.

                        Most of us who are diagnosed inject our meds. That hit me like a punch in the nose at first but I adapted quickly and now its no big deal.

                        Long post, I know, but I'm also a bit of a newbie to this stuff. I've only been treated for three years so far. There are other posters here who have been at it far longer and you may get some great info from them.

                        Comment


                          #13
                          Thanks again for the replies. I have started to eat healthier and started to jog nightly. Of course this has only been a few days, but anything helps i figure. I am going to start taking vitamin D supplements because i know the levels are borderline low. I asked the neuro about Vitamin B, and he said thats not important. I too have seen Vitamin B was good for the nervous system. @Bob698, i'm confused because the MRI is the only thing he can base a diganosis off of. The lumbar puncture came back clean, and at first he was telling me my symptoms were all anxiety based because its sensory. All my motor skills and muscle control is fine.

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                            #14
                            Originally posted by ovifan08 View Post
                            @Bob698, i'm confused because the MRI is the only thing he can base a diganosis off of. The lumbar puncture came back clean, and at first he was telling me my symptoms were all anxiety based because its sensory. All my motor skills and muscle control is fine.
                            Sometimes the MRI is all you need for a diagnosis.
                            I'm making that simpler than it is. I'm guessing your current Doc also did other tests besides the MRI.

                            This is why you should start learning what MS really is. The core problem is something we all share. Our immune system starts to attack our nervous system for unknown reasons. After that all bets are off and we rapidly start to diverge, especially when it comes to what I call the "secondary symtoms" that present themselves physically. This is because the brain and its nervous system are incredably complex.

                            Comment


                              #15
                              Originally posted by ovifan08 View Post
                              Thanks for the replies everyone. I think BigA nailed it on the head with me having anxiety that if i wait 2 months then something will happen making me worse. Also, i have never smoked weed or cigs in my life. My vitamin D has been low the past few years, but i have been told its not dangerously low. I think i might ask for suppliments just to be safe. From what i have read here and other places, those with higher Vitamin D levels seem to be better off. I also read something that said people taking DMD's do show higher Vitamin D levels than most. And MarkLavelle, your comment about DMDs affecting the system in a negative way for other conditions is what I am afraid of.

                              I know it because I've been there. I highly recommend meditation - it will change your brain and you will be able to live without anxiety. Since being diagnosed, I've transformed my life. But that doesn't mean to take meds- I did and they can change your life.

                              Read this regarding your vitamin D and take a megadose - that will be your best insurance.

                              http://www.overcomingmultiplescleros...and-Vitamin-D/

                              I can't recommend the book highly enough either. Whether you get a diagnosis or not, the book will take you through this and improve your life.

                              http://www.amazon.com/gp/offer-listi...seller=&sr=8-1

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