new here from W Mass, moving to NW OH soon

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new here from W Mass, moving to NW OH soon

Postby implodingspace » Mon Dec 19, 2011 6:15 pm

Hi everyone, just wanted to say hi and see if there was anyone close to me on the board.We live near Springfield, MA. Hopefully we will be moving out to NW ohio someday soon to be with my hubby who lives there right now, Luckily I've been used taking care of myself for a lot of years, and my 3 beautiful children that I homeschool with help of computers for the last 3 years, but loosing so much muscle on my left side and the weakness and pain from the 2 syrinxes makes it harder. I used to be the muscle gal who didn't even need to work out and I still had huge guns lol, who could easily carry a 100 AC up the stairs etc and now when I misbehave lifting things i shouldn't if i can manage to even do something, my 12 year old calls out "hey that's a really heavy gallon of milk mom!!!" LOL she's a riot. It would be nice to feel safe and protected and for once feel like everything wont fall apart if I can't physically do something. I started having neuro symptoms almost to a T like it was spinal MS in Aug 14th, but of course the chiro (w/ a 2 year post phd neuro fellowship) blew it off when the brain scan didn't show MS, i kept wondering why he didn't check my thoracic since my legs felt like i was wetting my pants and i had awful spasticity, quads flexed for 48+ hours no matter the heat, hot baths, advil, nothing, and september started the fasciculations 24/7 from the waist down, and still the chiropractor said it must be my adhd and central processing delays amplified through my CNS ..ugh...because if it was ms in the brain it was nothing. I'm sure I'm not alone here, but the worst part aside from trying to sleep eac and every night when literally every 3 seconds there were 5-10 spots at the same time twitching 24/7, the fear of what was wrong with me, i must have asked my cousnelor weekly if she was sure my mind couldn't do this because i'd be glad to take a pill and make it stop...one of the worst parts was spending aug-march not knowing who this monster was, couldn't sleep or pee with out being reminded because the fasciculations never stopped, by december my amazing primary who saw me monthly had foudn baclofen helped the hypertone and the vice grip pain that had been around my ribs since fall 09, (again why i thought MS, thought maybe that hug due to lesion) but he also found i was loosing strength and left leg muscle, and the fasciculations were moving up my trunk and reached my triceps by Feb.....the whole time my chiropractor was happily adjusting me 2 times aweek to 1 a week, and I hate to say it but i think it was making the syrinx elongate because the traveling of the symptoms was unmistakable

so finally a neurologiest ordered a thoracic MRI, lol, all my friends exclaimed finally @thoracic, or i should say the few that didn't think i was a whiner. And i sat at home with the scans on my computer and remembered seeing that syrinx on the web researching PPMS, it was a syrinx and the neuro confirmed it a month later, from T5-T10, and later found one at C4, and an open terminal ventricle (ventriculus terminalus, still not sure what that means, it noted a developmental abnormality if anyone knows fill me in !! lol) i also had 5 degerated and herniated discs 3thoracic, 2 cervical and 1 lumbar, some other stuff, bone spurs facet joint arthritis the usual

like others i've heard from, my neuro didn't get it, and still on my records, after finding the syrinx, wondered if the fasciculations weren't from anxiety? so sad, he never watrned me to be careful with straining, never mentioned a single thing about anything but only offered that his PA could do my meds or my GP could keep managing, wow,nothing else, again so sad. I know it is a thin syrinx, i think his notes said even though it runs through 10%+ motor neurons i am still wondering if it's anxiety lol and i can't imagine how i could make 10 different 2x2 inch pieces of calf and thigh and back and arm and even foot all pop that way

anyhow, a cause of the Sm was never mentioned, I don't have chiari, i have never had acute trauma. i assumed maybe all the herniations disrupting flow but i really have no idea, the only reasons i could even give my confused GP as to why i had so much disc degeneration was my joint hypermobility and play goalie every day for 10 years? I did a lot of jumping and landing on my side ha or whatever way i had to land to get that ball, but I'm really hoping to get in with this Chiari specialist in Boston, and hoping he CAN find an operable cause. I saw a publication of his in 2009 finding arachnoditis in a previously idiopathic syringomyelia

I feel a little stunned sometimes how my left leg could be half the size of right, my left back muscles atrophied as well, vibrations, cramping and other with a thin syrinx(although the fasciculations and other is weaker now since my muscles have seemed more dead weight, more like crawling a weak popping under skin, so this progression has offered some relief of the muscle pain), i know i can't be imagining it since the extreme vice grip pain started a year and a half before i saw the MRI, the twitching and atrophy , but i guess it seems so small compared to others MRI's I've seen on the web. Either way it's obviously really difficult news for a tough girl like me, so hard to take car of my house, sitting up or standing for more than an hour leave me in awful back pain...just stinks! I'm grateful that the Lord has blessed me with more peace than I ever would have had on my own, and I do believe he will use this and use me for His perfect purposes, but duh it's still hard and still a daily struggle to keep my heart and mind fixated above my situation

so I'm sure that's more than anyone wanted to know, lol, but it felt nice to finally tell someone who might understand, it's rather impossible for any of my well intentioned and loving church family to understand what your muscles dying feels like etc and it's so rare i can't find a doctor who gets it let alone know another sufferer that might know what it feels like to be me and feel alone. so thank you for anyone who read this and received my mini abridged version :) I pray I can be a blessing to others here as well.
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Re: new here from W Mass, moving to NW OH soon

Postby pseudotumor » Mon Dec 19, 2011 9:59 pm

Everyone here seems to have their own mysterious issues and everyone goes through an ordeal with them. Just keep hanging in there and stay positive that things will get better.
I wish I could recommend a great doctor who 'gets it' since so many don't, and though I used to live in Boston, that wouldn't do you a lot of good unless you want to go to Boston... :lol: This forum can be a great place for recommendations though.
Good luck and Welcome.
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Re: new here from W Mass, moving to NW OH soon

Postby implodingspace » Fri Dec 23, 2011 10:16 pm

hey there thank you for responding, been a crazy week for sure :) I am actually in MA indefinitely and was hoping to see Carl Heilman unless you might have other reccomendations?

does anyone have insights on the thickness vs symptoms etc. Mine are thin but long, slightly neurogenic bladder atrophy and fasciculations, so thankfully things i guess i can't convince myself i might have made up lol, you know how long enuogh of people telling you it's in your head you start to wonder :) i drove my counselor nuts asking her if it was my mind and each time she'd watch my muscles and say no way and each week i'd wonder again since it seemed so nuts

was curious how a skinnier syrinx can cause so much damage? thanks again for saying hi!! hope you have a wonderful christmas
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Re: new here from W Mass, moving to NW OH soon

Postby pseudotumor » Sat Dec 24, 2011 8:05 pm

I used to see Dr. Joshua Katz at Beth Israel. He was very nice, sympathetic, took the time to listen to me/work with me.etc. He actually was the first to suggest pfd and i'm so glad I had it done because though I still have problems, some of them are a million times better. Merry Christmas to you too.
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Re: new here from W Mass, moving to NW OH soon

Postby ScaredErica » Wed Dec 28, 2011 12:43 pm

Sorry to hear of what your going though. I hate reading about all of the different stories we all are living with. It a horrible horrible condition to have to deal with. But I wanted to let you know I am in NW Ohio and although I have a wonderful NL there are not many NS in this area if you want the name of mine send me a message when you get in town. There is also a nice little group of us here that are really quite knowlegdeable (not really me,lol) on all aspect of CM and SM that are great to talk to. Good luck with your move and we will welcome you to the area soon.
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