Patti66

[Quixotic1]

Hi, Patti, you posted under another thread where few people would see your story of being diagnosed and treated for many years with all negative testing.  Yes, I believe this is totally possible and within the published guidlines, but takes a smart and courageous doc to treat.

Would you repeat your whole story here so we can talk about this?

Quix

[floridamom2]

May need to take a Road trip!!  Have a great day!
Kristin

[Patti66]

I wish I could clone him too - he is the most fabulous, amazing doctor ever and he's also a VERY nice guy - his bedside manner is outstanding.  If you ever find yourself moving to Buffalo (and who would when they live in Florida?) - look him up - he's just awesome.

[floridamom2]

Thanks sooooooo much for sharing your story!!!  It helped me tremendously!  Wish we could clone your neuro and give us all a copy in our community!

I hope you feel better soon!
Kristin

[Patti66]

Sure pick away - and now, I also have a positive LP for a change - so now I'm not only experienced, I'm just as messed up as everyone else - for real. :)

[MOE12]

You seem to have experience with this disease... Could I pick your brain?
Moe12

[Patti66]

Actually yes we did a while back and he decided against it, as the Betaseron bruised me up horribly - people used to look at me like I was an abused woman - he thought Copaxone would do the same thing to me.  It might be worth looking into again though.

[essdipity]

Have you discussed Copaxone with your neuro?

ess

[Patti66]

Actually, I was just taken off Avonex around Christmas time.  As a bit of an experiment, since I've been on interferon drugs since, oh, I think 1993 maybe?  I never tolerated them well, the Avonex especially.  Got sicker than a dog from it every week.  So the neuro finally said we could try stopping it and instead, doing quarterly courses of IV Solumedrol.  I agreed that would beat getting sick every Sunday.

Well, since that time, things have been getting bad, so my feeling is come Monday, they will be putting me back on the Avonex.  And yes, I do tend to think the Avonex may have been keeping lesions at bay - not all the symptoms, but the lesions anyway.

[essdipity]

Thank you for posting! You are helping many more people than you realize.

One question--are you still on a disease modifying med? I wonder if that could be keeping the lesions at bay. But lesions or no lesions, you've had a lot of suffering.

ess

[Patti66]

Thanks everyone.  It's been a long road, and sometimes, a frustrating one.  More than anything, I would LOVE to get a positive MRI - just to prove that I'm not crazy.  Although, even in my craziest moments (of which there are many), I don't think I could ever make up these symptoms.

I'm pretty sure I've asked at every neuro appointment "And you really CAN have MS without lesions on MRI?"  It's generally the first question I ask after the "Do you have any questions?" part of the exam.  No doubt he's sick of answering it, and the last time I think he worked really hard to PROVE himself correct by ordering all those other tests (Lyme, ANA, Vitamin D, B-12, some myelo something or the other, etc.).  All came back negative leaving virtually nothing but MS left.  

When they say that 5% of the MS population will not show lesions on MRI, I guess that's me.  Just call me 5% Patti - LOL.

[Wobbly]

wow, that is an eye opener for me,  you hold onto that strength.. wish we had more Neuros that seem to know their job and seem human... thanks for your story and hope that pain subsides abit for you.. stay in touch with us and take care
andie

[monotreme]

Thank you for posting your story.  I truly hope the doctor can stop your pain.  You have been battling this for a long time and I admire your strength and perseverance..  

Please keep us posted on your progress.

Elaine

[Eliza3]

Thanks for the post. It is very encouraging to hear that there are doctors that will make a diagnosis without positive tests.

Elizabeth

[Patti66]

Absolutely I will repeat it, as I think it's important.

I was diagnosed in 1990 with MS.  MRI had just come on the medical scene (it was so new that I had to go to the ONE hospital in Buffalo that had an MRI machine).  Prior to being dx'd with MS, I was told I had inner ear disease, heat stroke and my personal favorite, that I was hyperventilating because I was a nervous new mom. :)

I knew none of those dx's were correct, as I was having horrific episodes of the room "rocking", like being on a boat in rough seas with nothing to hold on to for stability.  No way this was something "simple".

When I first saw my neuro, and explained my weird symptoms, he immediately smiled and said "that's oscolopscia (sp?)" - like he KNEW what I had been describing and everyone else had no clue.  I was sure I came to the right doctor.

My MRI came back clear.  So did the LP and the evoked potentials (with a slight deficiency in my right eye, which I'm sure was the kerataconus that developed in that eye at, coincidentally, the same exact time).  My neuro dx'd me with MS, as I had had at least 2 major attacks (I also was experiencing tingling in my feet) several months apart.  The MRI either wasn't all that important to him, or because it was in it's infancy, he possibly felt there were lesions the MRI couldn't detect.

I then went on to have more symptoms - trigeminal neuralgia, spasticity of the calves, numbness of the face, and on and on it goes.

And then the BIG ONE.  In 1994, I began to feel weakness on my right side, a little at first, and then more severe.  By the time I got on the phone with my neuro, I was fading pretty fast.  Not only was my right side weak, my left side was weakening too.  I became unable to move at all.  My husband had to dress me, help me to the bathroom, I couldn't even lift a FORK.  I endured 7 days of IV steroids, which, for the most part, didn't help, in fact, at one point, I felt worse.

Finally, after a couple months, I started to get stronger and eventually bounced back.

I did quite well until 1997 and the second big one hit.  This was the one that ended my life as a working person.  Basically, it started at work.  I could feel my right hand acting "off" when I was writing, but sort of blew it off as just a little MS blip.  And then I developed a severe pain in my left calf, which I thought was just a muscle cramp - well that wasn't going away, so my neuro sent me for x-rays to be sure I didn't have a blood clot - and naturally, I didn't.

That leg pain went on and on for weeks, and then the whole weakness thing started, and escalated, to the point of near paralysis all over again.  Only worse than my first BIG ONE.  I eventually got stronger and went back to work, only to relapse 2 weeks into it - that's when I decided I was done working.  If nothing else, I needed to get rid of the extra stress in my life.

I should note that all through this time, I had had MRI's which showed NO lesions, yet my neuro stood by his MS diagnosis.   Recently, after being on Betaseron and Avonex for years and years, and hating it, I asked for yet another MRI, LP (yeah, I REQUESTED one) and evoked potentials.  He agreed and they all came back negative.  He also tested me for Lyme, Lupus, B-12 deficiency and a host of other things - all negative.  He stands by his MS diagnosis.  I should add that my neuro is an expert in MS, he and his late partner developed Avonex.  He knows his MS inside and out.

I did pretty well until now.  I'm experiencing severe pain in my left leg and my groin area.  My chiropractor did a lumbar MRI to rule out spinal problems.  Other than a couple minor disk bulges, there was nothing to contribute to all this pain and muscle spasm.  I'm seeing the doc on Monday to see if he feels all this is an MS issue or something else.  I'm in such terrible pain right now, I just want it to stop.

Bottom line here is - I guess there are some doctors who WILL make an MS diagnosis despite all the negative tests in the world.  If you have the symptoms and the exacerbations, that's enough for them.