I am SO confused and really need a medical professional to hear me out

[KeepRockin]

I am in limboland right now with getting an MS diagnosis. I began seeking medical treatment for strange symptoms in early 2005 and was then diagnosed w/ 6th nerve palsy. I was seeing double out of my left eye and that was the only explanation I was given. It lasted for about 2 months and then spontaneously healed. In Oct of 2005 it happened again and I was then sent for an MRI of my brain w/ and w/o contrast. The findings were multi focal lesions in the subcortical white matter of my brain consistent w/ multiple sclerosis. I was also having what I now know to be called L'Hermittes every day for about a month. It was a zing down my spine and to my waist every time I bent my neck down.
I then went to an MS specialist who said that my posture, gait, reflexes, and senses were all fine, so he wasn't convinced it was MS. I has an LP that day. A few weeks later I get a call that said there were no CSF changes so I didn't have MS, have a nice life.
In early 2007, I woke up one morning and both of my legs from the calf down felt very odd/heavy/asleep (thats the best way I can describe this). I went to my PCP and he said that d/t my family hx, maybe I have diabetes. I was given a glucose monitor and sent home. My glucose was always fine, and about 4 weeks later, my legs felt better.
Earlier this year, I have the same odd feelings from the waist down. My PCP sent me for another brain MRI that showed one new lesion and a few that were enlarged. I was again sent to the MS specialist.
He drew another LP and told me that if my CSF still showed no changes, it was not MS. I then asked about the possibility of having MS w/ no CSF changes. His response was that in his 35 years of dealing w/ MS he had never seen it. So, of course, there were no CSF changes. He did decide that he wanted to see a cervical spine MRI.
I recently had this done. This showed multi focal lesions consistent w/ a demyelinating disease and concurrent w/ existing pathology.
In the mean time, I am so exhausted that for the past 3 months, every afternoon at about 3:30, I completely crash. I have to take a nap for about and hour or so. This doesn't seem so odd, but I have never been a nap person. I actually really hate taking them, but I can't help it. Most of the time I fall asleep, I'm not meaning to. I can be sitting at the computer checking my email and fall asleep. This is very out of character for me.
I just found out today that I have a follow up w/ my Neuro in Sept. I have to admit that I have no desire to go. He makes me feel like its all in my head and that there is nothing wrong.
But isn't it true that there doesn't have to be CSF changes? If that were the case, wouldn't it be considered a 100% diagnostic tool (of which there isn't any in MS, right?).
I just have no idea of what to do next, where to go, etc... I just feel like I am getting worse and feeling worse, and no one cares. I just want to know what is wrong and what I can do to fiz it. My God, I'm only 26 and I have a soon to be 4 year old daughter. I feel like I need to get my health under control not just for me, but for my family.
Sorry for the incredibly long rant, but I really need some advice of where to go, who to see, what to do. Just basically advice on everything. Thanks for taking the time to read this, and once again, sorry so long.
KeepRockin

[DrNoopurMD]

Hi,

What medications are you currently on?
Please go through the link below and see if under “other conditions that mimic multiple sclerosis” sounds familiar to you.
http://www.aafp.org/afp/20041115/1935.html
Since you say he is the best MS doctor in your area, I would suggest you to keep your September appointment with him. Do let me know if you need more information.

[KeepRockin]

I truly think that I need a second opinion as well. The problem is that the Neuro I've been dealing w/ is supposedly the best MS Dr in Iowa. I am trying to get an appt at Mayo in Rochester, but I am still in the application process (who knew you had to apply???) and I'm not even sure if I'll get a chance to see anyone there. I have no idea of where to go next. Any suggestions would be much appreciated! Thank you so much for you time and your response.

[KeepRockin]

I so far have been tested for Lyme Disease, Pernicious Anemia, HIV, Lupus, and many others that I'm not sure of. My PCP ran me through all of those tests before he sent me to the University to be seen by the "Best of the best in Iowa." He ran every test he could possible think of.

[patsy10]

Lyme disease causes lesions and MS-like symptoms.  I would make sure you have  been tested for it.

[DrNoopurMD]

Hi,

I can understand your anxiety and concern.
MS is very difficult to diagnose as it mimics so many other diseases. There is no single diagnostic test.
Diagnosis is made on the basis of history, clinical exam and lab reports.
Occurrence of two or more episodes of neurological symptoms less than a month apart each lasting for at least 24 hrs, along with demyelinating lesions on MRI and abnormal CSF findings are diagnostic.
I would request you to please seek a second opinion as you don’t want to miss the diagnosis. Let me know if you need more information.