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Multiple Sclerosis Community
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380677 tn?1199983468

People who have MS

Has anyone out there ever been diagnosed with MS without have any lesions show up on an MRI AND having a negative Lumbar Puncture?

I am curious as to whether or not this is even possible.  My physician says that it is but before I fill my body with MS drugs, I wanted to put this out there to the group.

I am seeing some posts of people who were not diagnosed when initial symptoms appeared and later the lesions did show up and I am sure the lateness in diagnosis did hamper the prevention of some of the long term effects.

Any thoughts?
17 Responses
Avatar universal
Hi everyone!!

We are back to the good old days in PR, our holidays are just over.  In our traditions they last until January 6, which we call Three Kings Days, who also provide kids with toys.

Hi Traci what you mentioned in your post is what my good neuro calls clinical MS, which is you have all the symptoms, but the lesions are hidden, due to in my case a long time ago, treatment with steroids and having both tests done right after I finished my 5 day treatment.  She told me that the steroids treatment was so intensive because of my vision loss, that sometimes it seems that the lesions never existed. So to answer your question, it does happen.

I hope I do not confuse you more and that you understand what I've just written.

Good luck with your new treatment and remember we are just a message away.

Zulma (Gooddays)
380677 tn?1199983468
Thank you so much for your quick response.  I have one more test to do before I move forward with treatment...the good ole "lumbar puncture"..... Cannot tell you how much I am looking forward to that test!

I am sooo glad I have found this forum because I was really starting to think I was crazy.  I know there is a lot of liability for a physician  if they misdiagnose a patient but each Dr has made me think I "dreamed all of these symptoms up".  I have left every appt crying and thinking I was insane.

I have met soo many wonderful people who have MS over the past few weeks and have gained so much strength in their words.

Thank you for taking the time to answer my question!  I hope we can keep talking....
Avatar universal
Traci, let me welcome you to the MS world!!!!!  I am sure that most of us who are in this forum have cried our eyes out in our physicians office and after we left the office.  Maybe this is why I have to wear an eye patch on my left eye for a period of 6 months to a year in order to recover my regular vision.  This is on a trial basis!!!!!!!!!!  No, this is not a joke, it is the honest to goodness truth.

You see, there are a lot of physicians, people, family members, friends, anyone you talk to that are always thinking that you are making your symptoms up.  They do not know better.  If you could go back to one post in late december where we talked about clueless people, I wrote that not everyone can fit in our shoes because God decided that only special people will get MS and went ahead and mentioned the reasons for having it and I truly believe each and every one of them.

My advise to you is, if you can do some research go ahead and do it and if you have any questions, write them down.  You can come to us for answers, but remember we are not experts or even trained to be doctors, except for Quix, but then again you should have a good relationship with you pcp or your neuro, who in turn should be able to answer your questions.

We are your best cheerleaders, so if you are feeling down or just need to be heard, we will be here for you.  One more thing I always say, we have MS, but MS does not have us.

Zulma (Gooddays)
382163 tn?1204602660
Oh My God!! I can't believe the post and as I was reading it to me husband he said "Is that You?" I said NO He said but it sounded just like you!! I am so tired of going to doctors and them telling me the test are negative or unclear. Like today and again I am just at the beginning. I seen my neuro-opthamologist to get the results from a reason MRI and he said there was something there but it wasnt very clear and he wanted to do the LP and I asked what if it comes out negative and he said we will go to the next step. Its always the next step... but never any answers. I am so tired of not being able to sleep because of the pain in my hips and legs and the burning in my feet, and tingling in my arms that it is unreal. I just want answers and I have found out more on this forum then anywhere else. THANKS TO EVERYONE
380677 tn?1199983468
I guess GOD knew what he was doing when he helped me find this forum at 3am Saturday morning after yet another negative visit to my Dr's office on Friday.

I have never felt so close to so many people I have never met!  Thank you ALL for everyone who has posted to my questions.  I feel better now than I have in 6 months just hearing others tell me I am not crazy.

I am a horrible insomniac becusae it's just not worth it to toss and turn all night because both of my hips are killing me and my foot is on fire....I know that sounds familiar to about 60% of the people who are reading this right now.

Thank GOD for al lof you!  I read in one of these comments that GOD only picks the "special" people for MS and I finally believe that....tonight!

I have 2 more tests and a list of questions for my Neuro.

Thank you my new found "angels"!!
Avatar universal
You know most of us MSers toss and turn at night because pain decides whether we sleep or not.  Hopefully your physician, once you have your test results, will help you with something to numb your pain and you will be able to sleep.  One thing that most physicians agree with is that you need to rest in order to avoid a relapse or exacerbation, you should try to avoid them as much as possible.  A relapse is one big bout of MS which calls for intensive treatment with steroids to prevent permanent damage to your central nervous system.

You should also avoid fatigue, stressful situations, anything that would trigger emotional feelings because in the long run you would end up paying the price.  I am not trying to scare you, I am just trying to give you some advice because when I started in this long pathway, I did not know that this forum existed.  If I only knew back then....

One more piece of advice, keep up your faith and lay your heavy load in the Lord's hands.  Let him know that it is too heavy for you to carry it on your own, but that with His help you would be able to do it.

Keep up posted:)

Zulma
380677 tn?1199983468
Excellent words of advice....I have been praying much more lately.  I believe he only gives us what we can handle....so we all must be really special huh!
Avatar universal
He does not make mistakes, so I trully believe we are very special.

Remember we are a message away!!!

Zulma
379971 tn?1232385410
My husband just asked me the same question. This is uncanny! For nearly 6 years now, we have been to see so many neurologists that I have lost count. I too was diagnosed with "clinical MS". The bottoms of my feet burn, I have a tingling sensation in feet, legs,arms and hands. I have extreme balance issues (my hubby calls me klutz), I've had several bouts of optic neuritis. I have difficulty picking up small objects. I have had times of very little symptoms and times of great difficulty. My hands shake, and if I get really cold my body goes into hyper-shake. I am seeing yet another neurologist on Monday. Maybe this one will be able to help. So far my brain scans have showed no lesions and the lumbar puncture fluids were okay. My vision has been impaired but my new ophthalmologist is helping me with that.
Sorry to rattle on so long but I just couldn't believe that there is someone else out there that sounds just like me! Thanks for listening.
382163 tn?1204602660
This forum is so great and  I never knew I wasnot a lone. If only the doctors would see this too. Yet again I had a very restless night. Friday is yet another doctor's appointment. Keep praying and God Bless all of Us.
195469 tn?1388326488
I just read all of the posts and your responses and would you let me tell you all something?  You have got to be the greatest group of people on the whole Internet.

I just puff up with pride to know that I am associated with such fine, loving and caring people.  You all are so good about giving comfort to others and welcoming all newcomers.  Please, please, give yourselves a big hug and a pat on the back.

As you always hear me say, this group is full of "Angels with Invisible Wings."  What a GREAT group of human beings.  God bless all of you... WOW

Weeping Heather
Avatar universal
Hi
When I started looking for some answers to my symptoms, the first thing that I was told, like most of us, is that it was all in my head.  How I had wish that it had stayed in my head.  If it had stayed in my head I would not be wearing an eye patch for the next 6 month to a year, on a trial basis, in my left eye to try to  stop my permanent double vision.  To top it all, I would not have too wear leg braces in both legs, which according to my doctor they and my cane would become my best companions for the rest of my life.

The best part of this forum is that you can come and rattle and someone will be in touch because all of us have been on the road your going through at some point in our life.

Try to keep busy doing something else beyond MS until you get your dx.  I know it is easier said that done, but you would drive yourself and your husband crazy until your your doctor's appointment on Friday.  Do some reading (if you can still do), listen to inspirational music, watch a good movie, anything to take you mind off for a while, it will help.

We are just a message away.  Keep in touch.

Zulma
Avatar universal
You see Heather when I started in this forum, you and Quix were the leaders in the welcome wagon, which means we had FREAT TEACHERS to follow.

Remember we have MS, but MS does not have us!!!!!!

Zulma
379971 tn?1232385410
I feel so blessed to have found this awesome forum. I have been from pillar to post trying to get a diagnosis. Most of the neurologists that I have seen immediately say it's stress, I've even been told that I have PTSD and they put you on nerve pills. They don't realize that by their attitudes they are creating stress!
Is there a Doctor among us? If so, would you please tell us why most neurologists think its all in your head. Never mind the fact that you have no sense of balance, you drop things and can bearly pick up small objects. It doesn't seem to matter that your vision is compromised or that you have muscle spasms that are extremely painful, nor the fact that you have tingling sensations from your neck down and can no longer tolerate shoes on your feet because the bottoms of them burn. How can a Doctor just look at you and not see that your symptoms are real. Mine are certainly not all in my head.
Sorry for venting, but it sure made me feel better just saying what is on my mind.
I will try to stay busy until I see the "New" neurologist on Monday. Until then I'll just keep checking in here.
Blessings to all!
195469 tn?1388326488
Neurologists are a different breed of doctor all together.  They need visible, concrete proof staring them right in the face, with AL things positive before they will give you a diagnosis of anything.  That's just the kind of doctor they are.

And you know Wiggles, with MS it really IS in your head and in so many cases, in your spine too.  So we will give them that much.  MS is indeed in our heads. You betcha...

Please report after your doctor appointment on Monday and let us know how is goes.  Hope this new doctor can tell you what is going on.

Best Wishes,
Heather
251222 tn?1270939717
Traci and Mr. Wiggles, I wanted to welcome you to the forum. Great advice from Zulma there on keeping your mind busy. It helps to immerse yourself in something you like.

All the best

Fizzle
379971 tn?1232385410
So how do get a definitive diagnosis! I've been through the wringer and  don't know where to go next. Any help greatly appreciated.
Best to all
mrwiggles
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