New - MS Spectrum

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New - MS Spectrum

Postby bibliotekaren » Sat Jun 20, 2009 6:29 pm

Hello All,

I've been lurking for a while and decided that I'd like some company on this journey from folks who understand.

While I've had unexplained stuff for years, my first episode was a year and a half ago -- life hasn't been the same since. A couple of months ago my 3rd episode started (tight but gumby legs with difficulty walking, weakness, balance problems, buzzing/tingling/prickling in the legs/arms/torso, nerve pain in legs, slurring, hardcore fatigue, tight tight throat, urination frequency that's off the charts, blah, blah).

I've been spiraling worrying about holding down my job as it's just me and my mortgage. I leave work early when the cog-fog/fatigue hits before I lose my legs and start slurring.

The MS Neurologist says I'm a tad out of the MS box as the MRI brain lesions aren't quite classic, the spine & VEP are clean, and my symptoms gradually come on and then go. She said true MS is sudden. So, I'm in what she refers to as the MS Spectrum. She said for all purposes if I needed to explain to someone what's going on I could say I have MS and she could help with symptom management but she can't recommend CRAB for me. Honestly, I'm not sure if that's a good or bad thing.

I'll be touching base with her in a few weeks after the LP. She recommended I do all the other things helpful for MS and we'll keep doing follow-up MRIs. I worry about the continued loss of function though in the meantime.

I'm tired of going solo on this journey. My life is really small due to my energy being used for the basics -- so that compounds the isolation. I do find moments of peace though and will continue to look for them.

Look forward to hearing from and learning from others on this journey.

Donna
Last edited by bibliotekaren on Tue Jun 30, 2009 10:17 pm, edited 1 time in total.
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Postby catfreak » Sat Jun 20, 2009 7:27 pm

Hi Donna,

I was probable MS for 5 years before getting an "official diagnosis" of MS last year. I had symptoms for 3 years prior to that.

You don't have to go it alone, we are here for you. This is a great place to come for support.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Welcome Donna

Postby lyndacarol » Sat Jun 20, 2009 8:10 pm

Welcome, Donna -- we are happy to have you join us. Your story may not be "classic MS" in one sense, but it is common to many of us here. In my own case, all testing was negative -- EMG, my first several MRIs, etc. My first neurologist even told me that I definitely didn't have MS! And I absolutely disagree with the doctor that told you that true MS is sudden.

Because I have tried the ABC drugs and found NO help from them, I do agree with the doctor NOT prescribing one for you. My recommendation is not the prevailing one encouraged by the National MS Society and others at this website.

In my opinion, you seem to be doing all you can at this time -- with reading, with diet, with supplements, with lifestyle.My one additional suggestion that I think will improve your energy level is to try a low-carb diet -- no sugar (and NO artificial sweeteners), no potatoes, no white flour, no white rice, no white bread.

As the song goes, "You've got a friend..." Actually at this website you've got LOTS of friends!
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Postby bibliotekaren » Sun Jun 21, 2009 8:02 am

Cat and LindaCarol,

Thanks for your warm welcome.

Am wondering about the years before you were "official". Did any neurologist work with you on symptom management for flares? This one appears willing to do so and did not use the term probable MS but acknowledged that I'm in the game -- sort of.

LC, I was interested to hear your disagreement with her about symptoms/flare being sudden in their onset. That surprised me too. I wonder what others think about that -- may post on the general board.

Thanks for your welcome. It's been a lonely couple of years.

Donna
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Postby catfreak » Sun Jun 21, 2009 8:06 pm

Donna,

I started having symptoms in 2000 after a bout of mono. Started having migraines and in the fall of 2002 they became unbearable so I went to a local doctor, who thought I was drug seeking, and he insisted that I have an MRI. So I did and he told me it was just a sinus infection. When it did not get better I went to an ENT and he looked at my MRI and sent me for a CAT Scan to confirm no sinus infection. He told me symptoms sounded like MS. This was early December and with the holidays came and went. I just ignored the MS thing completely. I customer of mine told me one day on the phone that my various symptoms sounded a lot like her daughters MS. That was a wake up call for me and I called the ENT to double check the MS thing. So I started my research into MS.

I researched Doctors and sound a Neuro that specialized in MS and sent my MRI and Cat Scan to him. They said I would have to wait 3 months for an appt unless he found something on my MRI. Well a couple days later they called and said I needed to come in to the office. This was in February of 2003 and I was DX probable MS / demylinating disease. I went in every six months for an MRI and we watched the changes until the official DX in 2008.

This is the condensed version anyway. He worked with me on controlling all my symptoms.

Hang in there,

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby bibliotekaren » Mon Jun 22, 2009 5:17 pm

catfreak wrote:I went in every six months for an MRI and we watched the changes until the official DX in 2008.

Cat,

I'm sure that this is indeed the condensed version. Thanks for explaining how your process went.

So were you losing function in this five year time period while you were watching the changes? I fear that my last episode left me more impacted than I had been. Time will tell what returns, but I'm struggling a lot more with daily functioning and experiencing symptoms much more consistently. Just wondering...

Thanks, Donna
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Postby catfreak » Wed Jun 24, 2009 8:08 pm

Hi Donna,

There is a criteria that is used to diagnose MS. I had some lesions but they were small. I did not have the bands in my Lumbar Puncture and the Evoked Potentials test was very iffy... So I was probable MS. Then one day the lesions started multiplying and getting bigger and I had relapses. So, somewhere in there it became enough to diagnose.

If you are like me you will learn that some days you just ache. Some days my shoulders burn like fire (today). Some days my back hurts or my constant 9 year headache becomes too much. Some days I do OK and almost forget I have MS until my arms get numb, I feel like something is crawling on my legs or I can't stand shoes or socks to touch my feet. (just to name a few things left over from a relapse)

My life will never be the same. But I am tough. I put on my big girl panties and deal with it. I try to tell myself it could be much worse.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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