Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I have been away a few weeks or so.
Some of you know, many probably do not so a quick recap.
Diagnosed with MS in 2001-2011 by an MS Specialist. She moved out of state. Went to another MS specialist who say I more than likely do not have MS in fact he is fairly certain. The optic neuritis was a fluke... and may have never happened... even though I was diagnosed by a Optho and had an evoked response that showed ON.
There are about 20 lesions on my brain. He says they are from migraines.
So now I am lost. I don't know where to go when i have problems. No one I can relate to. He did not tell me, but in his report to my GP he said I had Chronic Fatigue or Fibromyalgia. But the doctor I saw said I did not.
But, following his logic, I went to the CF and Fibro boards and I just don't fit in. I don't share their issues. They don't share mine. I come here where you guys have limb weakness, burning sensations, spasticity, cobweb feeling, loss of bladder control, and vision problems. And I fit here.
But I feel wrong being here if I don't have MS. I feel so lost. I have nothing to hate, nothing to fight, I don't know what to blame. For the last 10 years I have been on medication to stop the progression of MS, a disease I am now being told I did not have. I don't know who to believe.
I just feel like I am wondering aimlessly around now with no one else to relate to. Just so very lost.
Some of you know, many probably do not so a quick recap.
Diagnosed with MS in 2001-2011 by an MS Specialist. She moved out of state. Went to another MS specialist who say I more than likely do not have MS in fact he is fairly certain. The optic neuritis was a fluke... and may have never happened... even though I was diagnosed by a Optho and had an evoked response that showed ON.
There are about 20 lesions on my brain. He says they are from migraines.
So now I am lost. I don't know where to go when i have problems. No one I can relate to. He did not tell me, but in his report to my GP he said I had Chronic Fatigue or Fibromyalgia. But the doctor I saw said I did not.
But, following his logic, I went to the CF and Fibro boards and I just don't fit in. I don't share their issues. They don't share mine. I come here where you guys have limb weakness, burning sensations, spasticity, cobweb feeling, loss of bladder control, and vision problems. And I fit here.
But I feel wrong being here if I don't have MS. I feel so lost. I have nothing to hate, nothing to fight, I don't know what to blame. For the last 10 years I have been on medication to stop the progression of MS, a disease I am now being told I did not have. I don't know who to believe.
I just feel like I am wondering aimlessly around now with no one else to relate to. Just so very lost.
I believe... eventually I will. But he broke my spirit. I just need to get it back.
He actually told me quite adamantly that I was NOT to seek another opinion. He said that would be doctor shopping and he is sure I could find a neuro out there who would say I had MS. But they would be wrong. That he is one of the best, all he does is MS and he knows.
Yes, I know, never trust a doctor who says that. But, it still messes with your head. He did a number on mine.
I just need to get my fighting spirit back.
Yes, be weary of a doctor telling you not to seek another opinion. Jamd1 is right, seek another opinion since both doctors say different things. Bring your concern to the latest doctor, and advise him that you don't consider seeing another opinion as doctor shopping. Heck, I have seen 5 neuro's before I found one that I was happy with.
But, you must seek another opinion. I'm sorry the doctor's are so far away fom you. That makes it more difficult.
You must hang in there and be strong at this point of your dx. Remember you are your own best advocate! Don't let the doctor's beat you down! We are here for you.
Yes, you should NOT be doctor shopping. But if you have one doctor saying one thing, and another saying the opposite, then clearly you need another opinion. That's not doctor shopping - that's advocating for yourself and making sure you understand your situation.
PLEASE PLEASE PLEASE! Go get another opinion ASAP. You NEED to know what is going on - and if it IS MS then you need to be able to take meds to fight it!
Either way - if you feel you belong here then you do. It's that simple. Plenty of people here don't have a DX. No one cares - we are here to love and support each other regardless of what your actual medical records say. That doesn't and won't change based on one doctors arrogant opinion!
Sandra
3rd oppinions are well worth it if you ask me.
Marissa
I feel just like you. I have many symptoms that fit right here. I feel like I have found my dx myself while my doctors try, almost desperately, to ignore, or explain away many of my symptoms that are evidence of MS. I really don't know why this is so, but I am now referred to a Rhumatologist. My Nuro says: "Stop trying to find an answer to all your symptoms together. I believe there are several things going on." I have the white spots too. Anyway, I will see the Rhumatologist, and at the same time I will get a second Neuro opinion.
I can relate to how these doctors can make you feel lost and without hope. Everytime I get a test showing something and my doctor makes light of the findings, or I get a normal result, Then I ask what else can my symptoms be coming from, the doctor either says it could be the fibro, or looks like she simply doesn't believe me, it sinks me into a deep depression. My anxiety level goes off the charts. I have to pray for comfort and calm.
They, (the doctors) don't really tell you where to go from there do they.
Take the time you need to recover, then get another opinion. You have the right to find a doctor who knows how to listen, and can care about you personally enough to help you find a satisfying answer to what is going on with you. Let it be called "doctor shopping." So what - you are paying for a service. You are a customer. The doctor is the provider of a service you are paying for. You always retain the right to go to the a place of your choosing to receive service. If a waiter gives bad service, you have the right to either choose to endure it, thank him for his service, and then never return, or you can get up and leave to find another restaurant.
Anyways, don't let the insecurities of that ridiculous doctor get into your head. You need to think you.
Sorry you had that experience. Feel better soon,
Your friend,
Rebecca
I have missed hearing from you. I have been wondering about you and hoping that you are well.
Just for the record, I HATE MOST DOCTORS!!!! You wouldn't believe my experiences. I could write a book. But I am very, in fact extremely lucky with my neuro doc with my MS. I will hate it when he retires because no one even comes close.
There are a lot of bad MS doctors because I have heard horrid stories. I know of one locally who I heard was just awful and would bring some people to tears. And then he would tell people with obvious MS that they didn't have MS!!! And even I could tell that they had MS because they had THE MS WALK!! A big HUG to lchoppel for her avatar!! So doctors can be really dumb at times.
So, please keep asking the questions.
1. Call up your local MS Society and ask about all the neurologists who specialize in MS. I went to one neurologist who didn't know that much about MS and she wanted me to go through all the needless tests after I had already been dx. So I dropped her and I was really glad.
2. Go to a local support group (if there is one). The MS Society sponsors self help groups and they really can help you find a good doctor. They can share their experiences and tales.
3. Go to www.ratemds.com and look up a doctor there. It is a free website. I found that the bad ones are usually rated as really bad and that would give you a clue.
Lastly, don't feel lost. You are right at home here. No matter what, you stay here until you find a good doctor and please vent and talk. Your posts help everyone.
And Tarabunny, did I tell you I had a bunny rabbit in my yard the week before Easter!! And now he/she is gone now that Easter is over. Weird.
A big HUG to you.
Ez