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Posted 8/12/2008 2:25 AM (GMT 0)
Hi D'awesome,

I'm pretty sure that I met you about a year ago when I used to be on here regularly????? Please excuse my slack memory.

I was just reading another post about diagnosis....and see that you were diagnosed without lesions or ON bands.....

I am one of the many here in limboland, and was just curious to know what symptoms/signs lead your neuro to the diagnosis......sorry if this question is too invasive????

As for me I've had mixed test results:

One lesion on first MRI
None on follow up MRI
Clear Spinal Tap
Severe delay in left eye on Evoked Potential test

Given my neuro exam, symptoms etc one neuro said he'd bet on it being MS. Then I got a second opinion...he said it isn't?????

I'm dealing well with my current symptoms, and pretty much trying to ignore it all....but there's always that nagging worry that it'll hit hard tomorrow......hate the uncertainty!!!

Anyway....if you feel like sharing your story it may shed some light on where I can head next?????

Thanks
KAS
Posted 8/15/2008 3:47 AM (GMT 0)
Hey KAS,
Happy to share my story, though I often feel weird cos it doesn't "fit" the expected norm of definite routine... lesions and obands. I wish it did sometimes but then what difference would it make? The symptoms and pain and all the other crap is still the same! I've only been around here about the last 6 months since my dx... however, to answer your question, yes, I've been dx'd without the lesion and Obands based on a very lengthy monitoring by my neuro (every 2-3months), multiple labs to rule out everything else possible and then issues that confirmed it were:
- atypical migraine headaches
- extreme spasticity (I had no clue what it really was til now that it's over and pretty much gone, I realilze it was a "flare" of that!)
- Multiple numb spots from both my feet, to my right knee, to my left arm, to both hands, to my right upper quad of my face,
- NO leg strength, no stamina, no grace or balance
- Eye Tics (uncontrollable jumpiness) - comes and goes
- Drunk walking (I regularly flunk that test these days)
- Intention tremors after using my right hand to spray paint anything for more than 45 minutes.
- the neuro sensory test reflexes react opposite of what they're supposed to in my feet
- Nerve conduction test showed the nerves were smaller and slower reacting than normal in my legs
- debilitating narcolepsy sleep-like exhaustion... incredible fatigue I couldn't figure out how to handle
- Chronic digestive tract and UTI issues... trying not to be graphically gross here but loss of sensation causing great embarrasment
and the clincher was my right eye- optic neuritis in March, diminshed color reception, peripheal motion sensation preception that wasn't really there, halos in the lights at night, poor night judgemnent and dept perception.

After over 12 yrs of these nuisance symptoms happening slowly (and everyone around me pushing it off on my age, my thyroid weight gain, my grief periods, my whatever excuse they figured was better than me knowing something wasn't right), then the lst 2yrs of everything suddenly compounding along quite quickly, even without the lesions found (he says they are there, the MRI just hasn't seen them yet- may try the big magnet eventually 3.0) his initial thought was MS and his conclusion is MS. Only now we've concluded it's "benign" and I'm most likely in the 12-15 yr stage of the 15-20 yr window most "benign" MS patients have with it. If I'm very blessed, it'll stay benign. If it exacerbates to more and more flares, then I'll be on Copaxone very soon. For now, we've agreed to monitor it another quarter then compare notes again next visit.

That's my story. It's hard, it's frustrating and it's a devilish disease. We've tried to make it fit anything else but it won't... and funny as it sounds, even after I got the "answer"... I started thinking well, maybe he's wrong after all and we missed sometihng... not so. On top of all this though, we are monitoring my pituitary for a potential tumor... should know more on that next visit.
Posted 8/17/2008 6:01 AM (GMT 0)
Hi D'awesome

thank you so much for your reply!!! I appreciate the time you have taken! It has helped me to put my situation into perspective.

You have obviously had a very long road to travel....I hope it gets better for you!

Thanks again

KAS
Posted 8/17/2008 6:02 AM (GMT 0)

Hey Deb,

I know you had an appointment with your neuro.  I was sort of expecting to read a post - you are so good about sharing.  I have been waiting to hear whether or not you are starting a progression therapy.  I am thinking from this post that you are doing the wait and watch thing.  Tell me if this is what is going on.  How did that appointment go?  How are you feeling in general?  I know you did some steroids due to an upper respiratory infection.  Those are usually a methylpred pack and not the super high dose of solumedrol but that still might help with some of the MS symptoms. So, anyway, just curious.

Posted 8/18/2008 1:29 PM (GMT 0)
Hey Gretchen, sorry about that... yep, had the appt and yes, we're on the wait and see. His thing is this: one more flare in the next quarter and we will go on copaxone. That is the one he wants me to start on. He feels I am in the benign MS regime... kinda "rare" but my symptoms all run the gamut of that path, and the timing is showing its progression coming up faster towards more aggressiveness.  So, with that in mind, if I have another flare (which honestly, guys, I did not know what it was until NOW when I can honestly say I feel so fantastic out of that spasticity flare, it's so weird to know the difference now because it went on for so long, I just thought it was going to be life with MS for my right leg!) then he really wants me on Copaxone.

I am the resistant one. I know I shouldn't be and I had lunch with Olivia's mom and it was wonderful to meet and she's awesome about the Copaxone so when I decide to go on, she's a great support for it. But we  meet again in November and by then will have more to discuss.

We are also pursuing the enzyme panels on (I hate this part but my "word fishing" and mind blanks brought this about) a dementia panel, plus my adrenal deficiency levels for the cortisol to be sure the pituitary isn't growing that potential tumor we suspect. So with the complications, we're in the "wait and see" mode, he's never been one to charge without all the observations in effect but his main rule is: first issue, first flare, call me immediately, I want to know and see you. So I'm really good with that.

MS is such a wickedly fickle disease... as displayed by my lengthy road to get to this point. Even now I queried him on his dx and we reveiwed all we've done, he says there's not much else he can turn to for another dx. So I trust him. I just think the waters muddy with the pituitary problem too. If the pit MRI's were clean, it'd be alot easier to just charge forward. But the pit doesn't have anything to do with the limb/leg/spasticity numbness etc... that cause most of my migraine and weight and appetite problems.

for now I'm enjoying the quiet MS time... and having folks say, my you look great! And I feel great too! turn What a change!

PS he's also switching me to zanaflex off of flexeril but I haven't had a chance to fill the order yet... so don't know how that will go yet, and he took me off the bacoflen as it didn't affect me at all.

Posted 8/20/2008 2:09 AM (GMT 0)

Hey KAS...    meant to say your most welcome... anything to help others realize it's a journey. Trust the process, trust your neuro. When you don't trust your neuro, find another you can. It's already better for me, I understand more, and I have the support I need to help me learn along the way... like here! Keep seeking, you'll find your way!

Deb

 

 

 

KAS1 said...
Hi D'awesome

thank you so much for your reply!!! I appreciate the time you have taken! It has helped me to put my situation into perspective.

You have obviously had a very long road to travel....I hope it gets better for you!

Thanks again

KAS

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