MRI Clear, Evoked Potentials Clear, Lumber Puncture Clear what now

[superscatty]

Hi I have all my results back and they are all normal, I had a weighted MRI for Brain and Spine, no lesions.  LP was normal and Visual Evoked Potential normal and Somensentory potential normal.

I have problems with my legs, painful and weak, I now have to self catheter as bladder no longer works, tingling in hands and feet, balance issues, and tiredness.

I was diagnosed 18 months ago with fibromyalgia.  My consultant still thinks I have MS.  I said could it be my fibromyalgia and he responded that Fibromyalgia is not a good enough  reason for my symptoms.  He says my symptoms are classic of MS.

I cannot get a formal diagnosis of MS without any adnormal results.  My neurological examination was poor, weak left side, unable to balance and walk in a straight line.  Is that enough for the consultant to diagnose and get me on
some medication.

I was wondering if anyone had had this experience, I am getting desperate.

Thank you

[COBOB]

1)  Too many neuro's praying to the MRI "god"
2)  Revised McDonald Criteria say if you have two attacks separated by more than 30 days and they rule out the mimics, you can be diagnosed with MS.  You do not need MRI lesions or positive O-bands or and abnormal VEP.  THOSE TESTS ARE SUPPORTING EVIDENCE OF A CLINICAL DIAGNOSIS.  

You have to keep working through this.  Ask your Neuro to explain what is going on.
What is causing my symptoms?  Why does it seem like I have attacks and then things get better before I have another attack?  The doctor needs to do the differential diagnosis to explain your symptoms.

I'll admit that having a few lesions help.  Some of these docs seem to want to see a lot of lesions in classic locations.  Well, MS doesn't work that way.  Some lesions are too small to be detected by MRI.  Higher resolution units help, but there are still tiny lesions that my not show up.  There is research that show a type of damage where myelin is spared, but the axons are destroyed.  This form of the disease will not show up as classic T2 weighted  lesions.  All that they will see is atrophy of the brain and T1 "black holes".  Most neuros don't even consider this.

Keep pushing for an explanation of the symptoms.  I hope you don't have it.  At least they can do something about many of the mimics (like Lyme's.)

Bob

[telynn]

OMG I can not believe how many of us have so much trouble getting the right dx. I was missed dx 10 years ago by a dr I trusted he told me I had parvo or 5th disease, ended up in the hospital for over a month , had Kidney failure, pericardosis, all cause by RH FEVER, I had strep infecction and he missed it and did not give me penicillin. I was dieing!!!!! It damage my arota and I have had chronic pain since. also had to get pen vk shot every month for 7 tears after that. I wish i could have sued him!!!

after that I when to dr to dr with pain of coarse all they could say is I have Fibo, Last year I found a dr who beleived me and did more testing my TPO was 5000 and tsh was .009 So when to Endo he said I has Hashitoxicosis, treated me with some pills for 5 months then I asked him when will my thyroid start working again and my tpo go down He says they will not ever be the same he was wasting my time getting me in there every month knowing that I needed RAI, he was just Trying to get more appt's out of me to bill INS.  I was so mad it is an hour drive and a 3 hour wait to see him, So I told him to do the RAI already what is he waiting for. Iam already going nutty. So he did it, and after kept me n the same meds for along time, about th 3rd month I was so sick, went into his office and he says OH my you are hypo!! round face and all... my tsh was 67. jerk!! so he put me on Levo, and ever told me to stop taking my enderal... ***hole. I have i friend who is a ER Dr and she told me to stop them right away that if iam hypo I should not be taking them, I already take prinaval due to my arota damage.  I hate DR's too!!! well i do have one good one who is helping me. Just did a MRI cuz she thinks I could have MS  unforsionly I could not find a lab out my way that had a T3 MRI.

Anyhow i feel your frustration and pain It is just so hard to find help. Dr seem to use Fibo cuz they are lazy and do not want to help this is what has giving Fibo a bad rep.. My pain and symptoms are way more then Fibo would be.

I hope you can find one Dr who will be on your side as I did at lease she is trying.

we can not give up Is hard but keep trying the good ones are out there just hard to find.!!

Hugz Terri

[figuerpa]

Dont ever give up. I know it is easier said than done but you know your body more than anyone and you know when something is wrong. Not being dx'd with MS is a great thing but not having a deffinate dx is so hard to deal with.

The hardest part of the limbo process is the hardest part of all of this. My nuero says I have MS but my insurance wont cover the meds until there is more proof so I am right there with you in a way.

We can never give up...we must keep fighting for answers that we deserve. Sometimes it takes a while for lesions to show up. My sister had 4 MRI's that were clear..the last one showed several lesions which in turn lead to the LP and a dx. Took her 7 years to get the diagnosis. With that bieng said I will once again say....we can't never give up.

Take Care,
Paula

[Sumanadevii]

I always ask the same question...What strength was the MRI of your spine?  I ask because it wasn't until a very smart neuro had a 3tMRI of my spine done that the lesions showed.  While I waited under another idiot neuro a lot of damage was done to my body.  So that is my first question...

Then I want to add there was a thread recently (in the last weeks) where they talked about 5% of MS patients do not show lesions.  I guess maybe they are too small or hard to find on the spine.  You might want to look back over the threads and read it.

If you continue not to get results and damage is being done to your body, I would suggest another opinion even if you like the doctor.  JMO

[houseofallboys]

I'm in similar situation as far as the testing is concerned..I have had normal MRI's but the only thing they have found is O bands in my spinal fluid a couple of months ago....Once the MRI's can back clean my neurologist didn't blow me off but asked if I needed to come back ( in a round about way) I told her no unless I started drunk walking again..

About a month later I started drunk walking again and she saw me again...I had another spinal tap about a month ago.. I still have gotten the results because something they need to spin spinal fluid is on back order...I don't know

So I'm wondering if they don't find anything this time is she going to write me off...think it's all in my head ....as bad as it sounds I really want them to find something... I know there is something wrong with me...

I'm nervous for the results and hope she will continue to work with me on this...she has been good so far but I'm nervous that she will let me go..

I hope you will find answers soon and get the treatment you need...many prayers coming your way ..

Kelly