Everything Depends On This MRI

[slightlybroken]

I feel like I've hit brick wall, after brick wall trying to get a DX of some kind. I'm pretty much frustrated with the whole thing and I'm sick of feeling sick. I feel like I've hit rock bottom and I'm beginning to lose hope and I would really like some advice. Pretty much everything is dependant on whether this MRI shows anything of whether I'm going to get anywhere. I have had test after test. The only thing that has came up bad was my MRI which showed some abnormalities (lesions) of the brain and possible abnormality on my c- spine.

I went to a new neuro this past Friday and needless to say I left feeling abused, on trial, and heartbroken. I had a bad feeling about the appointment before I even got there. I usually research info on my doctors just to find out who they are etc..but I couldn't find anything on the doctor I was going to see. I was going to this university hospital because they have the best MRI machines and I figured that was at least a plus for me since my old neuro kept sending me to a low tesla MRI machine. When I couldn't find anything I checked out their licence information through the state. I was surprised to find out that their licence was a "MD training certificate". Knowing this, I was very upset but like I said at least they have very good MRI machines and they would have a neurologist over seeing what they did.

I went to my appointment anyways because I've waited 4 months to get somewhere and my opthamologist wanted me to be evaluated immediately because of what he saw on the eye exam. He believed it could be MS and that I might be suffering from problems further back on the optical nerve where he couldn't see. She evaluated me and asked me questions. I tried to explain the numbness I get but I don't think she understood what I was trying to say. I told her that the numbness is more of a dulling in feeling at times and sometimes it's completely numb. It reminds me of when something is swollen and you have feeling but it's dulled.

She did inform me that a previous MRI of the c-spine that my old neuro reported as being normal ( there was something there but he said it was too small to see) might contain a questionable lesion. She also said that I did seem to have some symptoms of MS but she feels I didn't have MS. Then the appointment took a turn for the worse. So I asked her what's wrong with me and if I could be suffering from something else. She said all my test have been normal so she thought it could be stress. Let me make one thing clear!!! I am stressed...but and this is a big but...these SX started before I got stressed and the only stress that I'm having is because I can't seem to find a good doctor that will help me and give me a DX of any kind.

Then she brought in the neurologist that I guess over sees what she does since she is a MD in training. He was a complete jackass. He would ask me questions..I would try to answer him and before I could answer him all the way he would talk over me and ask another question. I felt like I was on trial. Then he said.."I don't think you have MS because your SX don't match with MS and I don't think you are suffering from anything life threatening." It's probably stress. Excuse me but when does stress give you double vision & eye muscle weakness, weakness , muscle spasms on one side of your body etc...?

So here I am tired and confused and about to throw in the perverbal towel. What do I do now? Like I said, everything depends on this MRI or I'll be DX with stress!! When I started into this mess, to be honest, I knew nothing of the SX or anything about MS except that it could put you in a wheelchair. When I started having SX it was the doctors who said MS not me. I didn't wake up one day and decide that it would be fun to go to doctors spend money I don't have and have a bunch of test done for the heck of it. I'm hurting here and I just want to feel normal again. I want to be able to do the things I use to without wondering if it's going to be a good or bad day for me. This isn't fair. So what now??? I'll be having an MRI this Friday. Hopefully it's their 3T. But now I have a fear that if nothing shows I won't be any further than I was last year. I'm open to any DX to this point but I don't believe it's stress. I'm just so very tired....

[pippa620]

Just by the number of replies you've received chuck, remember YOU ARE NOT ALONE. We are here for you and good luck for Friday.  Some Neuro's are on a different planet and up their own ?  Believe me, four years of presenting with bizzarre symptoms from numbness, couldnt feel texture of carpet under my feet, numb sensations which lasted for weeks, pain in eyes but not like the pain I now get with an optic neuritis, but four years until I fell over, couldnt get up and they admitted me immediately with "we think you have a brain tumour which has been slow growing!!!!" I was under the neurotic diagnosis, depressed etc., MRI was unfortunately inconclusive but showed I didnt have a brain tumour, but the best news of the day following a lumbar puncture confirmed MS! With two children under five I didn't hear that as the "best news of the day".  Years have passed and my MS has progressed, but you need a diagnosis and we all hope this Friday is going to be the start of a positive move forward.  The unknown is worse, believe me as you know, but when a diagnosis is made, treatment in place, support agencies on hand you do find the strength to cope - and we will all be here for you. Some neuro's need to retrain in communications skills, bedside manner and just human mannerisms, because they have DR in front of their name they think they are above all others. Sorry but they are just like you and me, wee and poo, so don't be intimidated, speak up and ask your questions with confidence; you have a right to know - its your body, you have symptoms and you NEED a diagnosis.

We all wish you good luck for Friday and let us know how you get on. Remain positive, I know its hard, but you have a hidden strength which you will find to cope with whatever life throws at you. When dealing out the cards, we all got a bad pack, but hey you are NOT alone, and support from friends and family and us, just reading the above messages are all signs people, even strangers really care.  We've been there and are with you all the way.
Sending you hugs galore hon, and its not stress, you are not depressed so fight to get a diagnosis and then you can slowly take that on board and move forward.
Night night God Bless and always remember you are not alone x

[santana8]

I am standing right with you hitting these brick walls. I feel the exact same way and I too feel like quiting! So why don't  I?   My three boys who need me, or what is left of me! They don't seem to mind if I am a little different now! I wish we could fast forward this tape to the answer, but I guess for now we will just have to keep on hitting at these brick walls. I'll tell you what if your hammer breaks then you can borrow mine for a while until you get yours fixed, and maybe I could borrow yours if I need it! You are not alone, I don't know why we are being put through this test, but I do believe together we can all help eachother to keep fighting for the answers! I am here if you need me!

Thinking of you,
Santana

[cjacks]

SB

Every ones is so right on about this . You are not at the end of the road , just at the corner . Which way to turn? Be safe !  Maybe you might choose the one that leads to a new neuro.  the one at the learning facility is a Jerk.  

I was also thinking of throwing the towel in , I was sooo looww.. it was hard to imagine anything else.

I saw my new neuro ( #3) last week and one of the nicest things a dr  has said to me was from him.  " Are you getting around o.k. " as he was leading the way out of his office . He said it with compassion and meant it ( after a positive visit).  I can't convey how much this kindness touched me ...  or why I'm telling you about this very simple exchange ...  I guess its that he believed me . And you just never know what might be down the next street.

We only need a little validation to go on ..  .You can do this !  Keep on keeping on !

Jo

[luverofrogs]

((((((((((((((((Big huge hugs)))))))))))))))))))

I can relate to so much of what you posted!  You are not alone.  I hope and pray that you find the doctor that is going to help you very soon.  

[slightlybroken]

Thank you all for your reassurance and support. It means a great deal to me. This fight to find out what's wrong with me has been hard and I guess this weekend it just took it toll on me. Your encouragement helps me, to try to find enough courage to fight a little more for the answers I so desperately want. To answer your question Quix- they are going to do a brain and c- spine MRI.

When that jackass neuro told me that my life isn't being effected that much on what I can and can't do it really offended me. He didn't have no clue nor did he want me to explain. Just doing the dishes can take everything I have in me. I used to be very active walking my kids to school but even that was too much for my legs to take. By the time I would get half way home, my whole left side felt like it was going to give out. But he says that it's not effecting me that bad.

When I was in my twenties I would have weird health issues that would happen to me that doctors just couldn't figure out. Some of those SX have re-surfaced but back then, I would just ignore the SX. This, whatever it is, I can't ignore. It's just so hard sometimes. I know eventually I will get the answers but I have to be patient. Did I mention that patience is not one of my virtues?

You guys are such wonderful people. Thanks again for your support...I needed it. Your advice has helped a lot.
HUGS

[happyvalley]

I am so sorry that you are in this frustrating situation. I really feel for you because I am just starting this process and can see this endless road ahead--I have tasted what you are living with. Where do you live? I don't mean specifically--but are you near a big city? I know it takes so much time--but I would keep dr shopping until you find one you are satisfied with. A dr should believe you and make you feel like they really do want to help you. Some of my family members and closest friends are drs--so I know there are some caring ones out there.

Mine (although I didn't realize it at first) is fabulous. Her front office stinks but I at least get the feeling that she respects me, believes me, and wants to help. My mother hates her because the dr keeps saying MS--although we can't "prove" it yet. Mom's in denial and thinks the dr is too quick to label me. I guess doctors, like the rest of us, can't please everbody. They need to at least please you though. You are the customer.

Good luck--keep the forum posted--I'll be watching to see how it works out for you!

[mokibear]

I really understand how you are feeling. It is so frustrating to be told that your symptoms don't fit or to be cut off in mid sentence when you are trying so hard to explain something that is foreign even to yourself. To know that there is something wrong with you and yet no one will take you seriously. I too have been told at one point that my problems were psychological and that it was probably a mental disorder. I too was ready to throw in the towel.

I finally found a neuro who believed me and has agreed that my problems are neurological in order and has sent me on to a different MS clinic. I get my next MRI in June. He also has said that he will see me again if needed if I don't get anywhere there. So I finally don't feel left out in the cold.

I know how hard it is to keep going but we are all here to support you and help you through this. Hang in till the MRI and then go from there. Don't make this your focus though. You have gotten some great advice from the others. This is a very hard road to be on but you like the rest of us will survive it. Use us to help get yourself through this.

Hugs
Moki

[Want to feel well!!!]

Honey, if I could put my arms around you and give you a much needed hug of reassurance I would.  Your words show your exhaustion and you are understandable feeling beaten down.  I have worn your shoes and they are not comfortable.

Quix's words "we will not borrow trouble and try to base the rest of your life on the outcome of this MRI" should be your mantra.  There is an answer for you, it might just take more time, but right now let’s not focus on that.  There are other options for you to pursue if you need to, but maybe those options will not be necessary.

What you are experiencing, all your symptoms, are all important pieces of the puzzle and someone will put it all together, give you an answer, and this arduous search will come to an end.

Please hang in there.  Keep talking to us.  We’re here to help you along the way.

Much needed (((((HUG))))
Wanna

[Deb61]

Quix is always right on the money.  I couldn't agree with her more.  Many of us MS'ers have gone through h*ll and back to get a diagnosis.  Most of us have been diagnosed as hypochondriacs, mentally ill, and fakers and then later dismissed.  

It would be interesting to get a count of the average number of specialists (neuros, rheumys, etc.) before getting a true diagnosis.  I've been to three rheumys and two neuros before getting a diagnosis of MS.  I all but gave up trying to find the root of my major symptoms after my last visit with a specialist (neuro) who dismissed me.  I am to this day having trust issues with doctors and am having to even learn to trust my neuro, who diagnosed me.  I was traumatized by the whole process. I nearly gave up too, until my sister drug me in to see her neuro.  

So whatever comes of this MRI, we'll all be here for you, coming up fresh ideas or to give you support.  

(((((((((((((gentle hhhuuuuugggggssss)))))))))))
Deb

[Quixotic1]

Hey, Kiddo, I am so sorry you have to feel this way.  The worst I was ever treated by my first, "evil" jackass of a neuro was also when he was "teaching" a resident.  You guys wonder where the attitude comes.  You have to be taught to be bigotted!  Stupidity comes on it's own.  Arrogance is often environmentally transferred.

Even if this MRI returns no good information, it does not leave you diagnosed with "Stress."  Actually stress is not more a symptom or a diagnosis than "Pollution."  Who in the world ever validated the assessment of stress and anxiety???  

Here's a diagnosis.  I think you're sweet.

And it is not your last hope, though right now it feels that way.  Right now, we will not borrow trouble and try to base the rest of your life on the outcome of this MRI.  If it is negative and you are still left to twist in the wind, we will rest and reassess.  Even people who thought there were no avenues left to pursue have had new doors open.  Moki did, ess did, Wanna did, Craig did.  I certainly know how much you want to feel normal again.  

Others will jump in here and tell you that somehow, the brick wall puts some distance between you and it and new possibilities for finding answers do appear.  Are you having the full MRI series or just the brain?  With even a question of an irregularity on the old one in the spine, it would be unconscionable to not repeat the c-spine.  When my neuro looked at my c-spine on the 1.5T he pointed out a couple areas that were a tiny bit uneven, slightly ratty.  They were totally missed by the neuroradiologist.   Sure enough, when the did the 3T the lesions were in those barely discernible spots.

No matter what the MRI shows, there is still hope and there will be new information and new possibilities for you.  And we will always be here.  And if you throw in the towel, you won't have anything to dry your hands on after you step in whatever that was and try to get it off!  The towel stays!

We may have to get your ophthalmologist to do some broken field running and find a new way to get you really evaluated.  And if that fails we can have you certified as "not caused by stress by a psycvhiatrist, if need be.  Several people have done that, and it has really helped them later.

We'll hold you hand through this whole thing - though it does get crowded in the MRI machine, but maybe they will see one of my lesions and you'll get credit for it.  See there are so many possibilities.

(((Gentle HUG))) so as to not break you any more.

Quix