Doctor's Disagree

[Firecracker4]

I am a 33 year old female that needs help in making the personal decision to start or not to start on MS meds.  I started in June of 2008 with my right hand going numb.  We thought carpel tunnel since I have worked on a computer for 10 years.  After the EMG came back normal, I started having arm spasms, shocking sensation down my spine every time I looked down, fatigue, etc.  The new symptoms gave my family practice Dr the idea to do a brain MRI to check for MS.  The MRI came back normal. Then they did a C-Spine MRI.  They did find a lesion at C1-C2.  He referred me to a neurologist.  After that lesion was found, they did the lumbar puncture (which put me down for 3 weeks after, blood patch, double vision, etc.).  Needless to say, the results were positive for MS.  Then they ordered the Thoracic and Lumbar area's of the spine.  In the meantime, my knees started going numb, and the middle of my back would go numb.  My Dr. recommended that I go to Shands for a 2nd opinion.  The Dr. at Shands indicated that if we were to find any other lesions then I would have a diagnosis of MS.  So, since it had been 5 months since my last MRI's, he scheduled more.  He also ordered the evoked potential test. When those results came in my local neurologist was not concerned; however, I knew they found something by the way I was feeling.  When I saw a copy of the MRI reports, it is showing two more areas that were not on my previous reports.  I am no Dr., but to me, that says three lesions (all in spine, none on brain). The Evoked Potential came back as a delay in my left eye as well.  My Dr. stands by his decision that I am normal and have nothing to worry about.  In the mean time, I sent the reports to the other Dr. at Shands.  He called me within one hour of my email and said that he believes I def. have MS and should start the meds immediately.  So, long story short, I have one neuro saying Yes and one saying No.  I have three confirmed lesions in spine, positive lumbar puncture, positive Evoked Potentials, numbness, tingling, and a host of other symptoms.  Should I get a third opinion, has anyone else had this happen to them.  Any response is greatly appreciated and I am sorry for the length of this post, this is my first time on here and I just wanted all the facts (which I am sure I missed some).  Thank you for your time and consideration.

[sunshine8]

I certainly feel for you and that situation you are in. I am 34 and don't have very many limiting symptoms.

I stumbled backwords into an MS diagnosis and had a similar situation with multiple neurologists saying different things. I fell in the Summer of 2007 , had a head CT for a concussion, where they noticed abnormalities and then had a follow up MRI after my PCP noticed some balance issues. The MRI showed multiple lesions (8+) and the first neurologist I saw said that he thought it was MS, but wanted LP, Evoked Potentials and Bloodwork. All came back negative. (The LP was a nightmare and I had two follow up blood patches)

He repeated the MRI 3 months later and when new lesions appeared reffered me to an MS specialist. She said no MS based on negative LP. My regular Neuro did not like that answer and repeated all MRI's 3 months later. A new lesion appeared and he wanted to send me to a second MSspecialist. In the meantime I developed more clinical symptoms and had my first bought of optic neuritis. The 2nd MS specialist officially diagnosed me with MS.

I had a hard time accepting the diagnosis, not only because I hadn't really noticed my symptoms, but because the multiple doctors I had seen hadn't agreed. It has been 8 months since my diagnosis and I have yet to start DMD's because my husband I have been trying to start a family first. I just had repeat MRI's done last month and I not only had an enahancing lesion, a new lesion on my optic nerve, but I now have two lesions on my C-spine.

You have to either decided which doctor to trust, or better yet, get another opinion. It can't hurt to have another opinion. I definitely feel for you and encourage you to stay a member of the forum.  They have been very helpful to me.

Good luck!

Amy

[bearsmum]

Hi
You are having all the symptoms that I started out with.  I had many MRI;s and they couldn't come to a conclusive result for MS which is what they were looking for.  They sent me to a neuro who is the best in Australia when it comes to MS and he didn't believe I had MS but Mitochondrial Cytopathy.  Many of the symptoms are the same as MS.  I have had all the blood tests necessary for a diagnosis and it is all pointing to Mito and I am now waiting to have a muscle biopsy done to confirm which version of Mito that I have.  
I do not mean to scare you but I think it could be worth while mentioning Mito to your neuro.
Best of luck
bearsmum

[fdmh]

Hi, thanks for the reply.  Being undiagnosed, my sx happened last summer.  I had eye flickering in one vision field, followed by my left hand immediately going numb.  It only lasted briefly (20 minutes for the whole attack).  Nothing else happend until January.  For about 6-8 weeks I noticed a frequent tingly feeling in my left hand, usually just the last 2 fingers.  At least several times daily, but just an off feeling.  Then in mid January I had the eye flickering again, followed about 2 hours later with the left side of my lips going numb, followed immediately by my whole left hand going numb again.  The full numbness again lasted only about 20 minutes but my left hand was cold all day, and the frequent tingling didn't really go totally away for a few more weeks.  My PCP ordered brain MRI on 3 T scanner, which showed 7-8 lesions in periventricular white matter.  So I got referred to a neurologist.  She said because the numbness didn't last at least 24 hours she didn't know what to say.  When she read the MRI she was "unimpressed",and didn't see the number of lesions the radiologist saw.  I was thinking at the time that the tingling was positional but now I can't be sure, because it was happening so much and then just disappeared.  EMG was normal, as was a opthamologist exam.  So the brain MRI was the only thing I had.  That neurologist left the clinic and wanted me to follow up with an MS specialist, which I will see in September unless anything changes sooner.  I don't have any more MRI's scheduled because she wanted me to see the MS doc first.  I am just trying to be in tune to my body without going overboard.  My grandpa did have MS.  

[Firecracker4]

Thank you Karen for the response and friend request.  I am still trying to work my way around this site so I hope that I am posting correctly.

After my arm issues, I felt pretty good for a couple of months and then I started in March with my knees going numb.  I have that on a daily basis, they are not completely numb, just a very different sensation then the rest of my legs, a dense sort of pinns and needles, sometimes a cold feeling.  I also have heaviness in my legs and arms.  I notice that it is worse at night when I lay down. I don't have any pain, just extremely odd sensations all over my body.  The middle of my back goes numb when I do laundry or anything with my arms.  My bladder, I have noticed lately is filling up with more frequency.  Other then that, just a daily feeling of "I don't feel good".  Can't really expain why, just an overall feeling of being tired.  I truly feel like I am 10 years older then I am.  

I am currently trying to find an actual MS clinic for the third opinion.  I don't want to waste anymore time with just a neuro, I want a specialist.  My insurance is out of network for most of the clinics.  I found the Tanner Center for MS in Birmingham that is in my network, but am not sure about their reputation. I did get their info from the National MS society.  I just don't want to wait until October for more MRI's if I can help stop the progression now.  

If you don't mind me asking, how long have you had MS?  Are you doing ok on the DMD's?  Which are you taking??  Thank you again for your kind words and advice.

[Firecracker4]

It started on my right hand in June of 2008, then it moved up my arm and I started having complete arm spasms, shocking sensation down my spine everytime I looked down.  It lasted about 4 months.  Finally, after my horrible experience with the lumbar puncture, the feeling started to come back, all but my finger tips.  I just have a major loss of sensation in my fingers, like I have bandaids on all fingers.  I am so thankful that most of the feeling came back.  I started in March with my knees going numb.  I have a lot of heaviness in my legs and arms and fatigue on a daily basis.  I also suffer from headaces almost daily.  Thank you for your post.  I agree that I should start DMD's as soon as possbile, but I really need to have a agreed upon diagnosis.  I guess I am still holding on for hope that it could just be CIS......   Are you having similar symptoms??

[Karen99]

Hi again.  As you probably know by now from your research, MS often rears it's head post-partum.    I did a lot of research too before being diagnosed.  It was all so confusing and I scared the heck out of myself.  My symptoms were not typical at first so it took about two years to be diagnosed.  

Please don't be overly scared of multiple sclerosis. There is reason for concern, but remember, there are a lot of people who have MS who live full and productive lives.  I know many myself.  We are fortunate that there are now Disease Modifying Drugs that target the progression and disability MS can cause.  Oral immune modulators are just around the corner. There may even be a cure in your lifetime.

Everyone who has MS have their struggles.  I don't know you or your particular case, but statistically speaking there is every reason to believe that you will be able to raise your children happily.  You are not automatically doomed to a wheelchair.  You may need to adjust your life or manage your energies at some point.  Sounds like you could use some management of your symptoms now.  What do you think?

I guess if I were in your shoes maybe I'd get a 3rd opinion from a MS Specialist.  Do you know the strength of your MRI machine?  When the time comes to get another one, find a good facility that follows "MS protocol" and uses 3-Tesla strength MRI.  These two suggestions are very important.

Are you experiencing new symptoms or an increase in severity now?  

Hang in there.  You will find your way.  Keep us posted, okay?    

      

[fdmh]

How long does your arm numbness last?  I'm not diagnosed, but from everything I've heard and researched the earlier you start treatment the better the outcome.  Good luck with your decision.

[Firecracker4]

Thank you so much for the response.  I have responded to Karen99 so you may want to read that if interested.  I agree with you and that is what I have been told, to be as proactive as you can.  That is why I just can't understand why my Dr. is taking the wait and see approach and the other is ready to go.  If he feels that it could be something else, why not explain why??  He is just saying "You are normal".  Yes, I am not in a wheel chair like most of his patients but this just started in June of 2008, so I would not expect to have those kind of problems yet.  I just knew the minute I woke up that day something was wrong.  I have felt this way for years and just figured it was my body's reaction to two pregnancies and being a working mom, etc.  Now, looking back, it all makes total sense.  I was a gymnast my whole life, cheerleader, very active; however, I will get exhausted walking from my car to my son's school to pick him up.  That is not me at all, I know that something is wrong in my body as I am sure all of you do.  Thank you again for responding and being there for me.  I have already learned that support is a great thing and can help me stay positive, I truly believe that a postivie attitude will help.  I wish you and Karen99 the best of luck with your battle and If you ever want to share your situtation with me, I am always here to listen.  

[Firecracker4]

Thank you so much for the quick response.  I have looked into the Health Pages and they were very helpful.  I have educated myself about MS thru this whole process so I can understand what the Dr.'s are talking about.  I do have a good understanding, I believe, on what happens with MS.  I also know that the more progressive you are especially in the beginning stages the better outcome you may have.  That is my reason for questioning my first Dr.  He came highly recommended; however, I just can't get passed the fact that he is not worried.  If all of the tests came back positive, what is there to "wait" for.  He did indicate that I am at a very high risk of getting MS, but not yet.  My physicial symptoms are ok, nothing like what some people are dealing with.  I am able to walk, go to work, take care of my kids and am very thankful for that.  Everything I am experiencing right now is managable.  I just worry down the road what could happen. The Dr. who is not concerned is the person who referred me to the Dr. at Shands so I am just really confused how they can have complete different opinions.  I think the only way to know for sure is to go to a speciality clinic for a 3rd opinion.  The only thing that I can think of is that my local neuro has the old school way of looking at MS and the one at Shands is more of the new school way of thinking.  I just want some answers.  I kept asking my local Dr. what else it could be if he does not think it is MS and he can't give me an answer.  He did mention DEVIC'S at some point, but I think I would rather have MS...... I am waiting on a letter that the Shands Dr. is dictating to my local.  Then, I am going to make another appointment with the local Dr. and demand some explaniation.  I guess that is all I can do at this point.  Thank you again for your response.  I have been reading these blogs for months now trying to get answers and although I admit, I cry most of the time reading, it has helped me so much to know that I am not alone in this diagnostic nightmare!  

[Lulu54]

Hi Firecracker,
I read your question earlier, I had to walk away from it and am now back once again trying to figure out a good answer.  

To me it sounds like you have MS - and I would want to get on DMD's as soon as possible to slow any progression that is possible.  Waiting just opens the door of opportunity for more symptoms to appear.  The DMD's may not stop the MS but its our best first line of defense.

It is entirely possible that you either have no brain lesions or the lesions that are there are not visible with the techology we have available. Some forms of MS can be found only in the spine and not the brain.  

Karen is right about talking to the doctor - ask the tough questions and follow your own instinct.  

We're here to talk through this with you if you want. I know others will be along to add their thoughts.

my best,
Lulu

[Karen99]

Hi.  That a flabbergasting situation you find yourself in.  How confident are you in each of these neurologists?  I always listen to what my instincts tell me.  I trust that more than any doctor.  Remember, that a medical opinion is just that.  Only an opinion.    If your lumbar puncture was positive for "bands" and have had more than one episode or a worsening of symptoms, you very well may have MS.  Many neurologist believe that there can be lesions in the CNS that cannot be seen by MRI.

The official greeters of this site will most likely respond to you soon.  In the meantime, I would highly suggest that you read the "Health Pages" located at the top right of your screen.  That will help you to make your decision and/or what your next steps should be. Perhaps you will need to go for a third opinion.  Perhaps you need to ask these two neurologists what brings them to their opinion. Has the neurologist who said you do NOT have MS explain what your diagnosis might be or give an explanation as to what the lesions in you spine are and why you have them?

These sort of questions are what you have to ask yourself first and then ask the neurologist themselves.  

Again, please read the Health Pages.  You will learn that you need to know (the facts) about MS to navigate your way and advocate for yourself. Good luck.