At the end of my rope

[Jennie1977]

I am a 33 year old mother of 4.  I have suffered neurological problems since I was 14 starting with my first of several Bell's Palsy episodes.  I have have strange symptoms that come and go now for about 19 years with no answers until some recent tests.  I had a spinal tap 2 years ago that I was told was fine until I switched Neuros and he found numerous oligoclonal bands present.  I also have had a muscle biopsy showing a CPT difficiency and citrate synthase difficiency.  The doc's here are clueless.  Any suggestions?

Thank you
Jennifer C

[Deb61]

Different red saturation is a red flag for ON.  ON is not always seen in an examination as it sometimes occurs behind the eyeball.  An MRI doesn't always pick up on it either.  A diagnosis of ON could be the evidence that your neuro needs.

Are you having pain in your eye(s)?  If you are diagnosed with ON, have the O-bands, and the symptoms you have, it pretty well points to MS (as far as what I've read).

You should get the spinal and C-spine MRIs, though.  This would really be helpful in putting your mind at rest and for the doctor to make a final diagnosis!  

A couple of months before I was diagnosed, I told my neuro something like, "Yeah, you have to make sure I have MS before prescribing the medicine because of all of the side effects."  

His response to me was, "The side effects of the medicine far out-weighs what can happen in MS."  He went on to give stories about some of his patients that had MS.  Right then, I put two and two together and knew he thought I had MS but had together the evidence.

Hang in there!  I think it's a matter of time for the diagnosis to follow (which is very little time, I think).

Debbie  

[Jennie1977]

My insurance company luckily approved the Avonex.  I'm kinda scared to take it though.  I think I mentioned my Neuro doesn't really think outside the box and don't like the fact that he keeps using the term possible MS. I mean it's not like tylenol. I want to be sure of my DX before I start shooting things into my body.  I want to get better but yikes.  I have to get copies of all of my testing reports (thanks to all of you I realize I should have been **** that all along) and post them.  They keep doing MRI's of my brain but not my spine?!  They have always been closed and I have had contrast.  The institute I go to has one of the strongest Tesla ratings available.  I just don't understand why they are not doing one of my spine.

Hope ya have a great day.

As far as my eyes.  I do have different red saturation in my eyes however the neuro op said nothing unusual found but extreme dryness.  

[Deb61]

I wonder how your insurance company is going to cover the Avonex if MS is not written down as the diagnosis?  From my experience, I had to go through a wait period of the insurance company needing all the proper documentation from the neurologist before I could start my DMD (Copaxone in my case).  My medicine is $3000 a month, and I'm sure that Avonex is no different than that.

Have a high O-band count in your spinal fluid is a significant finding indeed.  Where are those little buggers hiding (lesions)?  Sometimes they can hide very well.

What has your opthalmologist said about your vision problems?  If you do indeed now have more of an MS diagnosis (which is probably needed for the Avonex), he may want to rule out optic neuritis.  Do you see the color red differently in each eye?  I was shocked to find that one eye saw reds duller than the other eye.  What are some of the vision problems that you have?  

Also, tell us about the MRI.  Did you not have any findings at all?  Did you have an MRI of the C-spine and spine?  Was it a closed or open MRI machine?  Was the MRI done with MS protocol?  Finding MS lesions requires thinner slices of pictures taken.

Welcome!  You will find lots of very nice people here.  I think it's the best MS forum on the Internet!

[Jennie1977]

Thank you all so much for commenting back.   I feel so alone all of the time.  It's a catch 22 to find people like you.  Great to make new friends but for crappy reasons.

Ok so had the LP 2 years ago when I was hospitalized for testing (I was walking into walls)
Didn't have a assigned Neuro just the neuro hospital team.  Was assigned neuro later and all I can think of is that there was a mistake and didn't get read and got lost in the shuffle.  
After normal EMG and MRI's I was the problem child with no solution. The only thing they had was a low carnetene count.  I had a muscle biopsy and they said nothing was found.  I was given to their "top" neuro and she never had anything remarkable to say.
I went to an eye neuro in Rochester NY and low and behold when he got a records transfer he found a report from the biopsy and it was not normal.
So I changed neuros and he found the LP report from 2 years prior and saw the O band count.  He is scratching his head because of no lesions.  Don't think he is an outside the box thinker.  He is kinda of the theory lets give her Avonex shots and see what happens.  I did not respond well to steroid infusion.  I have not started shots yet (I'm a bit scared because they are not sure) and am on no meds except for Klonopin and a Mitochondrial Mix supplement.

Because my fight has been alone until  now I didn't realize the importance of keeping my records.  Thank you for the advice and I will get copies and use this site to organize them.  Thanks for thew help on that.

Sorry this one a bit long winded.

Thank u again
Jennie

[MonkeyMom4]

Welcome!

I agree with what everyone else has said so far.

I'm sorry for all your frustrations. It's hard going through life everyday not knowing what the heck is going on with your own body.

I too have 4 kids and will be 33 in December! =)

Try, and keep trying to find a doc that will listen and not give up on you. I'm about done with my first neuro...we'll see in the next few weeks. ;-)

[sllowe]

Hi there,

Welcome!
I too am sorry for your what your going through and I hope we can be of some support to you.

I think figuerpa (Paula) above meant she's surprised the 1st neuro said normal if the O-bands were in your CSF (spinal fluid). Like she mentions the serum should be drawn at the time of tap to compare. If the banding is the same in each, this takes the Dr. in another direction where MS was a concern.

I'd have to research the biopsy result in order to know what that could mean, so it's best to see if anyone here knows more about that for comment.

Tell us how things were left off w/the new neuro. You say they are clueless. Is there a plan for testing and investigation to find what could be wrong?  Walk us through the appt. if you have the energy to do so.

Thank you for joining us,
-shell

[tjj3761]

Hello,

I am sorry to hear of all your neuro problems.

I hope you are at least being treated for your symptoms with medications until a diagnosis.

Also, did you by any chance have an EMG/NCS done to rule out the peripheral nervous system?

My neuro had told me that sometimes it can take 10+ years to get a MS diagnosis.

I would use a lot of the applications to the above-left to document your time-line of symptoms/diary and get copies of all your tests, visits etc. for documentation.

I, too, had symptoms that started in childhood that did not fully show itself until the age of 42.

You can also find a lot of great information, top right, Health Pages.

Bye...

terri

[figuerpa]

Hi Jennifer and welcome to the forum.

Has your neuro oredered MRI's of your head and spine to look for lesions? If you have numerous Obands you should ask your doctor if your IgG index is elevated as well, the elevated index is something they see in patients with MS. Did you have blood work the same time that you had the LP?

Not sure why your other neuro said your LP was normal if there were Obands in the serum. Did you have blood work the same time that you had the LP? Some neuros don't know what they are doing or maybe he was looking for something else.

Make sure you get copies of all your tests so that you have them for your record and for if you change neuros again.


Good luck and once again welcome
Paula