Message for JonM and floridamom2

Just wanted to say thanks to you both for responding to my post.  It's awful to think that other people are having the same nightmare I'm having but also quite reasurring that I'm not going mad alone.

I have read alot about the timelines you suggested but it's hard to know what is relevant.  I have an existing eye condition for many years which I have put my eye sight problems down to but now I think they may be connected.  I've had various problems with blurred vision, flashing and spots but again just put it down to my condition. I've also had 2 incidents when I have fallen down stairs through to dizziness/loss of balance, again I just thought these were silly accidents...are they relevant? I didn't mention this when I was in hospital as I didn't think they were related.Also 6 years ago I was taken to hospital as I had lost the feeling in my left arm and leg.  After spending a night in hospital I was sent home and advised to rest as they believed I had just over done it at work.  They numbness lasted for 3 days but I thought nothing more of it.

I guess, like you and so many others I just want answers.  Jon you mentioned about an mri of my brain.  I did have one which came back clear.  The only lesion  they found was in my lumbar spine. I have read alot about contrast mri's does this make a difference?  I find it hard to understand how a lesion was there, then it wasn't?  I only had one mri with contrast...could this make a difference?

I am still waiting for the band results but I am expecting them to come back normal too after my other test results....which takes me back to square one.

I have now been like this for over 3 months, apart from gaining a little more strength in my left leg the other symptoms remain the same. My life seems to have come to holt as I don't have the energy or strength to do anything. I am waiting to go into hospital to have a blood patch, as 4 weeks on I still have the lp headaches from hell but I don't expect to get any more answers from this.

I just don't know what else it can be.  When they first told me they were testing for MS I was terrified to say the least...right now I wouldn't care if they said I had the black plague...at least I could come to terms with it and get some treatment.but it's the living in limbo that is really starting to get me down, I'm the one who is always really positive and up beat but I'm having a few bad days at the moment..

Anyway, I am sure I have bored you enough ...sorry, it's just a release.

Thanks again for your response and advise....any more would be welcomed.

[floridamom2]

I am so sorry you are suffering so much!  I have a hx of migraines and have had what I think was several bouts with Trigeminal Neuralgia so the thought of that LP headache makes me scared to have one.  

Unfortunately, you seam to be where so many of us are right now  - in the land of "let's wait and see".  I have gotten a bit of my strength back and am not shaking as bad as I was the first two months.  I asked my neuro for a Medrol dose pack which is a small dose of steroids to help with the buzzing I felt throughout my body that was making me feel like I was going to loose my mind.  I have also increased my antidepressants to counteract the depression and anxiety of this waiting game.  Both seamed to have helped enough to get me through the day right now.  I am not the most patient person in the world but I truly have no choice with this disease process that is taking over me.  If you have searched on the internet for neurological possibilities to your sx you have probably found like I have that they all tend to say "difficult to diagnose".  Those are the most aggravating three words I have ever heard!!!  But they are my life right now and I can choose to fight it or just try my best to go with the flow.  The important thing is that you continue looking for answers to your sx and find someone who will be open to try remedies that may help.  

I would recommend that you continue looking for an MS Specialist that you could go to for a second opinion.  I am sorry this probably was not the help you were looking for but please know we are all in this together, waiting and searching for answers.

Take care!!
Kristin

[JonM]

Yeah you're in a tough spot now.  Talk to your doc about taking an Anti Depressant for a while.  It will help you and you don't have to take it forever, just long enough to get you through this period of uncertainty.

I can shed a little light on MRI's.  I'm repeating what I've been told by both of my Neurologists who are MS specialists.  MRIs of the c-spine are hard to read and subject to a great range of DX with whom reads them.  The radiologist could see lesions on my spine that the Neuro's could not.  I was told that they are typically inconclusive.  The Brain MRI is much more useful and consistently read by all.  Heck I can read the damn thing the white spots are so obvious.  Contrast, or I think more accurately gadolinium-enhanced, supposedly helps to distinguish between active lesions and past inactive ones and can useful at the time if your experiencing symptoms.  Another thing you may have heard is that there are different types and strengths of MRI machines.  Its important if you're comparing MRIs to get them done on the same equipment.  Otherwise ask for a T3 machine, which gives a better image and will show more lesions.

Hang in there!!!
Jon