@NS w/dad "Ask does she have CM/SM" NS says A WHAT

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@NS w/dad "Ask does she have CM/SM" NS says A WHAT

Postby blue1 » Mon Jun 11, 2007 5:02 pm

Hi Ya'll,
I was told to go see a NS b/c I started to loss control of my urine sometimes. My Father comes with me to finally find out whats going on with me. Hah! :oops:
The NS tells him there is nothing for him to do. :D
My dad asks whether or not I have a Cm or SM and he says a what. :twisted:
I explain. Oh! No she does not. :twisted:
I am freaking. :shock: I say You are telling me all this pain, change in voice and swallowing, seeing weird with ICP in one eye, peeing on myself, and when I want to pee I can't. Is not real.
You are in severe pain I just don't know why? he states. I the say!
So you're saying since 2005 4 different radiologist were wrong and my NL is wrong and my orthopedic too. He replys "Well it is a tiny syrinx" I really can't see you whole head on the MRI I doubt any pain is coming from that.
He left the office for a minute. :roll: I asked my dad, Do you really think in that amount of time before he entered the room he read my chart. No way. :cry:
(My MRI reads Syrinx from T1 down to the conus medullaris.
Correct me if I am wrong thats about T 1 to L 1 and measures 2.5mm in diameter.) He came back in and said the pain was not coming from the tiny Syrinx but could be Fibromyalgia, some disc problems :oops: (which I do have but not real serious to suggest surgery or spinal canal problems)
then came lose alittle weight get a regular exercise routine and eat nutriously.
Da Hey? :roll: :idea:
I am no Idiot! If I could exercise enough to get my heart rate up I would.
I have always been thin and into sports. It was not until pain entered my life did I gain weight and I still bought a gazelle and worked out 15 minutes a day. Not good enough So I stopped eatting, Mistake,
I just held on to every pound, now I am on a herbalife diet.
Now my dad thinks I am having pain from my vertebre and weight and my husband has got it just donw to wait.
What DO I DO NOW!
blue1[/quote]
blue1
 

Re: @NS w/dad "Ask does she have CM/SM" NS says A

Postby specialmomx2 » Mon Jun 11, 2007 5:22 pm

blue1 wrote:
What DO I DO NOW!


You get a second opinion from a NS who has a clue about CM/SM.

I'm sorry this has happened, and I wish I coudl say your experience is rare, but most of us have been through the same things. I went through 6 neurologists and 4 neurosurgeons (and a few other doctors), before I found a solution which kind-of works for me.

...And the other thing you do is never give up. You will find someone who can help you. Unfortunately, it's not this guy.

-Paula
"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

check out my blog: www.onesickmother.com
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Postby blue1 » Mon Jun 11, 2007 9:24 pm

Hi Ya'll,
I am falling down the rabbit hole to hell!
My father does not believe me but he does the doc. despite all the information I have given him and recently gave him. I was going to take him to my orthopedic so he can tell him it is not my disc and syrinxes do cause these problems. My dad said I am going to tell him how much I hate narcotics being given to you. :oops:
He is the only doc helping me out with some vicoden es. The NL has me on baclofen and zanaflex. My PCP has me on zonegran.
I TURN TO MY HUSBAND FOR SUPPORT. He agrees with my dad and worst he tells me I am drug seeking.
He is a full time Alcoholic. :cry: Telling me I want drugs to get high.
I have two glasses of wine and he tells me go to bed you're buzzed you had one more then usual. Other times times I get so anxious he will tell me go take a klonopin and lie down with the door shut.
I don't know whether to to be piss' d off or cry myself into a hospital.
I just have to wait to see my NL and see how he can embarass me in front of my family.
feeling blue1
Code: Select all
Laisez les bons temps rouler
blue1
 

Postby powerlineman » Mon Jun 11, 2007 10:06 pm

Do like me and tell them to go to h*ll. People know better to try to even insinuate anything to me that I'm faking anymore.
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Postby precious » Mon Jun 11, 2007 10:54 pm

I am so sorry you have to gothrough this between the frustration of not having the doctors believe you and then having your family doubt you and think your in it just for the high. Wouldnt you love to see them cope with the pain we have to go through day in and day out, and see how they would handle it? I feel your pain and you have every right to be angry and want to cry. Understanding you....
Precious
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Postby hayla2 » Tue Jun 12, 2007 6:40 am

Gee. This is so not fair. I will definitely pray for you. You don't need all this hackling on top of your illness. The stress can make your symptoms flare up.
My advice: Stop, take a deep breath. Regain your focus. Realize that you will have to block out those "diagnoses" that are demeaning to you. Only focus on getting to the right doc. Don't let those other people determine who you are or what is wrong with you. YOU focus on getting YOU better. That is what is important.

Do know that we, here, love you and understand your frustration. Melissa
Oh my brain! It is too big to be contained, yet too little to hold a memory. Hehehehehe
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Postby the 4ks » Tue Jun 12, 2007 7:58 am

Get a 2nd opinion from someone who is well versed in CM/SM.
Don't let anyone tell you its in your mind.
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Postby mac » Tue Jun 12, 2007 11:13 am

Absolutely great advice, I couldn't add a thing. Just put your armor on and stand tall, this is a battle and you a soldier in fighting for your correct dx and your life! Many of us here had to go through this fight, it cost us time, money, pain, tears, but it IS worth it. NO ONE will fight for you, only you. This is called self-advocacy and the thing I'm planning on writing a book about this winter while I'm in the halo! Anything is possible, even if you have no $$, but you have to fight and you have to make the calls and do the research. Don't take your father with you to appts anymore. ONLY take a good supportive friend with you, okay? One who will quietly sit there and take it all in, someone intelligent and caring and calm and quiet. I have a friend like this and she's invaluable. She's probably 75 yrs old and she's driving me to appts and she doesn't say a word, but she takes it ALL in and then we hash it out later. You have NOTHING to prove to anyone, but you have to fight that battle yourself.

Do you take a list of your symptoms every time you go to the doctor? Keep a copy for yourself, but be sure that copy goes into your file. That makes doctors accountable! Date the list! You don't have to go over every sx, but just hand the list to the doc, dated, and ask that it go into your file. Show him you have a copy. Suddenly, this doctor knows that it is on record the pain and sx you are dealing with....and he's maybe not doing so much about it.

That's a start. Now, get empowered!

hth
mac
mac
 

Postby daynthelife » Tue Jun 12, 2007 12:48 pm

Everyone is right!! This is a roller coaster ride for sure but along the way you learn to hang on and ride it out somehow.

Sometimes we only have ourselves to fall back on and if I've said it once I've said it a hundred times...only the strong can endure this disorder...so Blue...YOU ARE STRONG!! I know it gets frustrating, I know sometimes it gets just flat out overwhelming but there comes a time when it's best to put some things behind you and move forward. Don't worry about what others think. You know what's going on with your body and that's what matters. If they're not with you...so be it...maybe it's time to take care of YOU!!

I know the hurdles can seem huge but they can be jumped none the less..it may not be an easy transition but when it's over, looking back, it doesn't seem so bad. Blue...I'm can no longer work..I have no insurance...my children are in WA state and aside from my roommate and one friend I'm alone in CA even though many family members live within a couple of miles from me. I was panicked, afraid, lost, and felt I had nowhere to turn but I've learned, mostly from folks here, to keep pushing forward..with or without those around me and now I no longer need anyones acceptance...I don't need anyone to believe me..I BELIEVE ME!!! Keep believing in yourself Blue and keep looking for a Dr. that will believe in you too. It's the only way girl and the feeling you'll have at the end of the day is incredible!!! You can do this. We're here for you...

Much luv to you Blue,

Kathy
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Postby kiminfla » Tue Jun 12, 2007 1:49 pm

Great advice has been given so I'll just add my support -- we believe you -- please get to an expert if at all possible. We're here for you. Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby blue1 » Wed Jun 13, 2007 2:13 pm

Thanks :cry: :cry: :cry: to all of you. I had been doing this all by myself and my husband is in denial so my father wanted to find out if it is real. I also found out through him that my brother and sister-in-law also want to know if it's true. Thats why he came to that appointment with me.I hope the NL is going to clarify things and not pass me off as an idiot too.
I cry :cry: because you are my only friends and the only people who care. Thank you!!! I am glad to have ya'll and your support, suggestions and advice. :D
Sincerely,
blue1
Laisez les bons temps rouler
blue1
 

Postby Sandy » Thu Jun 14, 2007 1:35 pm

blue1,

I'm really sorry. I remember you well from the old board and everybody (your fam) thinking you were just a drug addict and stuff. I really thought that taking your dad with you to the appt. would be a great help. I was wrong.

Hang in there. You'll find the right doctor. Don't give up and if people aren't goign to be supportive of you, well...well... well, tell them to eat a big green booger, that's what!

love,
sandy :D
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Postby sylvester » Thu Jun 14, 2007 2:00 pm

blue1,
Everything they said, and "don't throw it (the big green bugger) up on the way to the bathroom and expect me to clean it up." :twisted:

Sorry if I offend anyone but I'm just so tired of doctors and others(and hearing about doctors) who don't really believe us. I'd like to make them live with this for a week. They'd change their tune.

Anne
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Postby RoadGlideMama » Fri Jun 15, 2007 8:43 pm

Don't stop trying. Get a 2nd or 3rd opinion. You also said that you lean on your husband for support and he's an alcoholic. Have you thought about Al-Anon? I still remember my 1st Al-Anon meeting. My dad was an alcoholic. After that, it was like my eyes opened for the first time.
RoadGlideMama
 

Postby blue1 » Tue Jun 19, 2007 5:05 am

Hi Ya'll,
I found a doc on the wacma page in New Orleans, it mentions that just because his name is on there he just had seen some patient, with a chiari, and got good reviews. Get this! He is even with my insurance and was only suppose to be a peds. NS until I took the change and called. I have a mistermeaner chiari and a small syrinx. Well I am seeing him alone Thursday, I wish I had a tape recorder. :idea: I just want someone to link at least some of my problems to this syrinx or I'll be getting a brain scan next.
I tried to call and talk with him first but no cigar. So at the least I won't be made a fool of.
Christine

blue1 :roll: :wink:
blue1
 

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