Re: Cassyy

[Guest guest]

Cassy,

I'm glad you seem to be getting closer to a dx. I hope I get one soon too. It will be validation, you know? I feel like I have to have a name for this, because it has changed my life so much and limited what I can do. It isn't all bad though. I truly believe that there are lessons for us, in every experience and circumstance we have. It isn't always roses, but we always learn from our experiences. This has made me more humble and less prideful. It has made me depend on others, when I need help. It used to KILL me to need help or ask for help from others. I have always been "the mother". My life has always been filled with people that needed me to be strong. My DH is such a help and support to me. He can tell with one look at me, or hear it in my voice on the phone, that I'm not well. He then jumps in and helps with anything that needs doing. I am so blessed to have him. My oldest son is 13, and he has Asperger's Syndrome. He is a huge help to me. I never realize how much I ask of him around here, until he's sick, or gone for a day. He hates it that I'm sick all the time, and is always worried about me. I love that and hate that. I don't want him to worry over me. Your daughters will learn in time, that some days you can do more than other days. I think it's harder on us than them, because we want to do so much that we can't. Kids are incredibly resilient.

To answer your question, no I have not had a spinal MRI. My GP ordered the one of the brain, and I took it to the Neuro last May, who blew me off. Basically, he said that he could order more tests, but it would be a waste of time. Grrrrr. I'm considering having my GP order the tests. I'm not going back to that Neuro, unless I have some huge problem, or an MRI that shows lesions. It becomes depressing when you have no answers and doctors think that it's psychogenic. I saw a Dr. last month that said my bladder trouble is neurogenic, so we'll see if that leads to anything. I just can't understand Dr.s that think this is all in our head. Who the heck would self cath if they didn't have to? Good lord. I do not self cath myself, but know of others w/out dx that have to. But...... it's all in their heads.

My current sx's are aching pain in my shoulders and down my arms, aching legs and feet, that sometimes feel like they are in a vice. I also get random and assorted shooting pains in different parts. Muscle spasms that at the longest, went on for 2 hours, which left me with deep burning pain in that arm the next day. I get deep muscle burning, but also get a skin burning sensation. The numbness, tingling and vibration sensations happen daily. My fatigue is so debilitating right now, and weakness, like I'm not sure if my legs will carry me. The fatigue changes in severity. Sometimes I feel energetic, then try to cram everything into one day, then end up paying for it, because I overdid it. I never learn. lol. Those things are going on now, along with bladder trouble and dizziness. I always walk goofy, and the last few days, my right foot keeps "catching" on the carpet, and makes me trip. Past sx's I've had are: stabbing pains in my eye, blurry vision, feeling like my eyes are vibrating, shooting pains in my face and head, and it feels like it hurts from my top teeth up. I have very brisk reflexes. Just in my left leg right now. There was a time a few months ago that my short term memory was really bad, and I was in a type of foggy thinking state. That comes and goes. I get numb lips and tongue sometimes. Several months ago, I had a strange sensation right around where your bra band rests. Like something was squeezing me,and I couldn't get a breath. Not painful, just VERY uncomfortable, and stabbing pains in my ribs. Good grief that sounds like a lot. But, it isn't all at one time. They seem to come and go. Also, the heat kills me. I feel very ill if I get overheated. Geez, no wonder the Neuro got confused with my list. lol.

Well, it's late, so I better get to bed. I'm glad you are jumping right in to this group. You'll love it. I lurk a lot, and pop in from time to time. Take care, Trista

! HI EVERYONE

HI,MY NAME IS CASSY,AND I AM 25 YRS. OLD.I HAVE BEEN SICK FOR 3YRS.,BUT THIS PAST YEAR I HAVE BECOME DISABLED.I MAY HAVE MS,IHAVE HAD 2 BRAIN MRI'S THAT WERE NORMAL,SO NOW THEY ARE GOING TOLOOK AT MY SPINE.I AM VERY SICK,AND WOULD LOVE TOO TALK TO ANYONE WHO WOULD LIKE TOO SHARE INFO..

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[Guest guest]

That's me Trista...I self cath from 3 to every time I go to the bathroom. And it's all in my head. ' Still on my dr's suck kick.Trista wrote: Cassy, I'm glad you seem to be getting closer to a dx. I hope I get one

soon too. It will be validation, you know? I feel like I have to have a name for this, because it has changed my life so much and limited what I can do. It isn't all bad though. I truly believe that there are lessons for us, in every experience and circumstance we have. It isn't always roses, but we always learn from our experiences. This has made me more humble and less prideful. It has made me depend on others, when I need help. It used to KILL me to need help or ask for help from others. I have always been "the mother". My life has always been filled with people that needed me to be strong. My DH is such a help and support to me. He can tell with one look at me, or hear it in my voice on the phone, that I'm not well. He then jumps in and helps with anything that needs doing. I am so blessed to have him. My oldest son is 13, and he has Asperger's Syndrome. He is a huge help to

me. I never realize how much I ask of him around here, until he's sick, or gone for a day. He hates it that I'm sick all the time, and is always worried about me. I love that and hate that. I don't want him to worry over me. Your daughters will learn in time, that some days you can do more than other days. I think it's harder on us than them, because we want to do so much that we can't. Kids are incredibly resilient. To answer your question, no I have not had a spinal MRI. My GP ordered the one of the brain, and I took it to the Neuro last May, who blew me off. Basically, he said that he could order more tests, but it would be a waste of time. Grrrrr. I'm considering having my GP order the tests. I'm not going back to that Neuro, unless I have some huge problem, or an MRI that shows lesions. It becomes depressing when you

have no answers and doctors think that it's psychogenic. I saw a Dr. last month that said my bladder trouble is neurogenic, so we'll see if that leads to anything. I just can't understand Dr.s that think this is all in our head. Who the heck would self cath if they didn't have to? Good lord. I do not self cath myself, but know of others w/out dx that have to. But...... it's all in their heads. My current sx's are aching pain in my shoulders and down my arms, aching legs and feet, that sometimes feel like they are in a vice. I also get random and assorted shooting pains in different parts. Muscle spasms that at the longest, went on for 2 hours, which left me with deep burning pain in that arm the next day. I get deep muscle burning, but also get a skin burning sensation. The numbness, tingling and vibration sensations

happen daily. My fatigue is so debilitating right now, and weakness, like I'm not sure if my legs will carry me. The fatigue changes in severity. Sometimes I feel energetic, then try to cram everything into one day, then end up paying for it, because I overdid it. I never learn. lol. Those things are going on now, along with bladder trouble and dizziness. I always walk goofy, and the last few days, my right foot keeps "catching" on the carpet, and makes me trip. Past sx's I've had are: stabbing pains in my eye, blurry vision, feeling like my eyes are vibrating, shooting pains in my face and head, and it feels like it hurts from my top teeth up. I have very brisk reflexes. Just in my left leg right now. There was a time a few months ago that my short term memory was really bad, and I was in a type of foggy thinking state. That comes and goes. I get numb lips and tongue sometimes. Several

months ago, I had a strange sensation right around where your bra band rests. Like something was squeezing me,and I couldn't get a breath. Not painful, just VERY uncomfortable, and stabbing pains in my ribs. Good grief that sounds like a lot. But, it isn't all at one time. They seem to come and go. Also, the heat kills me. I feel very ill if I get overheated. Geez, no wonder the Neuro got confused with my list. lol. Well, it's late, so I better get to bed. I'm glad you are jumping right in to this group. You'll love it. I lurk a lot, and pop in from time to time. Take care, Trista ----- Original

Message ----- From: cassandra workmn To: MSersLife Sent: Saturday, August 05, 2006 7:28 PM Subject: Re: HI EVERYONE HI,TRISTTA,IT'S VERY NICE TO MEET YOU.I HAVE 2 GIRLS--THEY ARE 8 AND ALMOST 3.I USE TO WORK IN THE MEDICAL FIELD AS A LAB ASSISTANT,I AM TO SICK TO GO BACK TO WORK. DON'T GET DISCOURAGED.IT TOOK ME 2 YRS. TO GET THE DOCS TO HEAR ME,AND IN THE MEANTIME THEY DX'D ME WITH ARTHRITIS(AND FED ME SOME OF THOSE

MEDS THAT ARE NOW OFF THE MARKET),AND THEN THEY SAID I HAD FIBROMYALGIA INSTEAD OF ARTHRITIS..EVERYTIME I WENT TO THE DOC HE ALWAY'S SAID IT'S THATT FIBROMYALGIA.THEY HATED ME,SOMETIME'S I WAS THERE 3 DAY'S OUT OF A WEEK,SO GET THIS ,THEY STARTED TREATING ME LIKE I WAS CRRAZY AND ONE OF THEM EVEN SSAID IT WAS IN MY HEAD.AT THAT POINT I WAS TO SICK TO ACCEPT THAT IT WAS IN MY HEAD,AND I! SWITCHED MY HEALTH INSURANCE PLAN. BY THE TIME I WENT TO MY NEW DOC----IT WAS AWESOME BECAUSE THEY BARELY HAD TO EVEN ASK ME QUESTION'S,THEY SEEN MY DISABILITY'S RIGHT AWAY,AND BOOM!!! I STAARTED ALL THIS TESTING,AND SEEING ALL THESE SPECIALIST'S,AND NOW I BELIEVE I WILL FINALLY GET A DX FINALLY AFTER 3 YRS. OF

FIGHTING. WHATEVER YOU DO DONT GIVE UP,NOBODY SHOULD HAVE TO LIVE THIS WAY.YOU WILL EVENTUALLY FIND A GOOD DOC.WHAT KIND OF SYMPTOM'S DO YOU HAVE?HAVE THEY CHECKED YOURR SPINE?Trista <tabeloecharter (DOT) net> wrote: Hi Cassy. I'm Trista. I am 35, married to Steve, and ha! ve 4 boys. (13, 9, 2 1/2, and 1 next Sat.) I have been working in healthcare, all my adult life, with nursing being my last job. I am unable to work now. I do not have an MS dx, but really believe in my heart that I will someday. It just "fits", kwim? I've been having sx's that caused me to seek a dx, for the last 6 years. I've been pretty much "disabled" for the last 3. But, I can remember possible sx's

popping up here and there for a lot longer. My Brain MRI was normal, my neuro tests were not all normal, but the Dr. basically blew me off. I'm discouraged, so I'm not going to go back to the neuro again. I hope you find the answers you need and quickly. I can totally relate, when you say you are very sick. I never know what I'll feel like from day to day. It makes it hard to plan anything, or get involved in anything outside me home. I spend a lot of time resting or sleeping lately, and all my energy is spent on my family. So, I don't have any real friends any more. It can be very isolating, when you can't get out much. This is a great place to help keep connected with the outside world. And, these people understand and are among the most caring people I've ever known. You are in good company. I look forward to learning more about you. Take care,

Trista ! HI EVERYONE HI,MY NAME IS CASSY,AND I AM 25 YRS. OLD.I HAVE BEEN SICK FOR 3YRS.,BUT THIS PAST YEAR I HAVE BECOME DISABLED.I MAY HAVE MS,IHAVE HAD 2 BRAIN MRI'S THAT WERE NORMAL,SO NOW THEY ARE GOING TOLOOK AT MY SPINE.I AM VERY SICK,AND WOULD LOVE TOO TALK TO ANYONE WHO WOULD LIKE TOO SHARE INFO.. __________________________________________________