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Nov 26, 2012 - 44 comments
MedHelp won't let me post my update for you all in the forum because it's too long. Grr. So I've posted everything here instead. I'm so sorry; this is causing so much confusion, I'm sure.
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Hi, all! I posted in this forum several months ago but haven't really been around since. I tend to quit posting in medical forums after a while because it begins to feel like I'm just annoying people after a while. However, selmaS posted on my new journal entry and asked that I update you all on what has been going on with me, so here you go for anybody who may be interested :)
I'm going to try and keep this as short as possible, but for those of you who may not be familiar with my story, I'm 23 years old and have been experiencing a wide array of neurological issues every since I was 14 years old. They didn't all start at once but, rather, have appeared over the years. Just as it seems as though I couldn't possibly develop more issues, a new symptom pops up. Super frustrating! I also avoided doctors for several years because I was stupid and afraid of finding out I had to have brain surgery or something. Somehow, I thought that living with all of these problems was preferable to having my skull sawed open, plus I was clinging onto hope that the problems would just go away themselves if I just ignored them them long enough. Dumb, I know. Someone mentioned chiari to me as a possibility once, so I posted on this forum asking if you all thought my symptoms sounded reminiscent of it. I don't know if I have chiari, though; it's just one of about a gazillion possibilities.
So, back in I think April, I reached an all-time low and decided to go to my GP. I presented her with a long list of my symptoms, and she told me they were all due to anxiety and prescribed me Xanax. I tried to explain that I was pretty dang sure that anxiety was not my only issue, but she wouldn't listen to me. A few weeks later, I had a really scary episode and called my dad in tears saying I didn't know what to do because I knew there was something really wrong with me, but my doctor wouldn't listen to me. He called his internist and asked him if he would see me, and we scheduled an appointment for three weeks later. His internist ordered an MRI and gave me a referral to a neurologist, but he said he didn't want to keep seeing me as a patient because he's in the same medical group as my GP and it would "create bad blood" to take one of her patients.
I put off scheduling the MRI for a very long time because I was still petrified of finding out I had a tumor or something and needed to have brain surgery. I finally went to the imaging center to have it done one day, but I freaked out when they opened the door and I saw the machine, and I told them I couldn't do it and wanted to go home. Stupid, I know. The whole situation was a mess complete with my dad telling me that he was kicking me out of the house, and if someone abducted me and murdered me, there would be no funeral because nobody in this world gives a sh** about me. So yeah. Then several weeks later, I went to see the neurologist. He wanted to order an MRI again. I told him about what happened the last time I went to get one, and he said we can try a CT scan since they're over quicker. I got that done, and he said it looked normal except there was some cerebral atrophy. He just shrugged it off as insignificant, though. Then he said, "Well, I don't want to put you on any medications at your age, so let's just wait 5 months, and then we'll see how you feel." I told him I've been having issues for almost a decade, so I didn't see the point in sitting around for 5 months waiting for a miracle cure, and he just said, "I understand that, but I don't want to put you on a bunch of medications."
I left the office very frustrated and emailed a local acupuncturist asking if he thought his services could help me since apparently my neurologist just wanted me to sit around and continue to suffer for 5 months anyway. He seemed confident he could help, so I gave him a try. I went to his acupuncture sessions and took the Chinese herbal medicine he gave me for about 3 months, but I didn't feel like I was seeing any benefit and stopped going to see him. He said I didn't really give Chinese medicine a fair shot and can't expect to be cured of a 9-year problem in 3 months, but his services are expensive, and I can't afford to continue to toss money at something I don't feel is helping me at all. One thing he did mention to me, however, is that a lot of my symptomology is consistent with chronic Lyme disease, so I began looking into that as an option after reading several people's stories and realizing that they DO sound a lot like me.
I went to a cardiologist about the chest pain I was having somewhere in there as well. He did an ultrasound of my heart and a stress test and said they both looked fine and he "didn't feel he had to run any further tests given my age," so I think I'm done with him too.
I asked my GP for a referral to another neurologist and just began seeing him a few weeks ago. He's going to do an MRI (this time I have to force myself to do it) and said he's going to do some other testing if that comes back normal because it could be a "structural problem." He's super booked and doesn't have a lot of availability, though, so I can't see him again until January. I asked him if he would test me for Lyme disease while I was there, but he said no because only people in New Hampshire get Lyme (completely not true by the way. ugh). About a month earlier, I had called the Georgia Lyme Association and asked them if there were any Lyme specialists in my area I could go see, and they said there weren't, but there was a doctor with a walk-in clinic who had been willing to authorize Lyme testing for patients in the past. The problem was he didn't take insurance, and he also has TERRIBLE online reviews. I figured I just needed him to sign the paper, though, so I went to go see him. He was SUCH a jerk to me; I never want to see his face again. He did run the test, however, so now I'm waiting on those results. I'm waiting to hear from the imaging center to schedule my MRI for the neurologist, too. It's been weeks, and I haven't heard anything, argh.
So yeah, I'm still here. Still frustrated with no answers. The good news is I'm surviving, though, I suppose. :)
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Hi, all! I posted in this forum several months ago but haven't really been around since. I tend to quit posting in medical forums after a while because it begins to feel like I'm just annoying people after a while. However, selmaS posted on my new journal entry and asked that I update you all on what has been going on with me, so here you go for anybody who may be interested :)
I'm going to try and keep this as short as possible, but for those of you who may not be familiar with my story, I'm 23 years old and have been experiencing a wide array of neurological issues every since I was 14 years old. They didn't all start at once but, rather, have appeared over the years. Just as it seems as though I couldn't possibly develop more issues, a new symptom pops up. Super frustrating! I also avoided doctors for several years because I was stupid and afraid of finding out I had to have brain surgery or something. Somehow, I thought that living with all of these problems was preferable to having my skull sawed open, plus I was clinging onto hope that the problems would just go away themselves if I just ignored them them long enough. Dumb, I know. Someone mentioned chiari to me as a possibility once, so I posted on this forum asking if you all thought my symptoms sounded reminiscent of it. I don't know if I have chiari, though; it's just one of about a gazillion possibilities.
So, back in I think April, I reached an all-time low and decided to go to my GP. I presented her with a long list of my symptoms, and she told me they were all due to anxiety and prescribed me Xanax. I tried to explain that I was pretty dang sure that anxiety was not my only issue, but she wouldn't listen to me. A few weeks later, I had a really scary episode and called my dad in tears saying I didn't know what to do because I knew there was something really wrong with me, but my doctor wouldn't listen to me. He called his internist and asked him if he would see me, and we scheduled an appointment for three weeks later. His internist ordered an MRI and gave me a referral to a neurologist, but he said he didn't want to keep seeing me as a patient because he's in the same medical group as my GP and it would "create bad blood" to take one of her patients.
I put off scheduling the MRI for a very long time because I was still petrified of finding out I had a tumor or something and needed to have brain surgery. I finally went to the imaging center to have it done one day, but I freaked out when they opened the door and I saw the machine, and I told them I couldn't do it and wanted to go home. Stupid, I know. The whole situation was a mess complete with my dad telling me that he was kicking me out of the house, and if someone abducted me and murdered me, there would be no funeral because nobody in this world gives a sh** about me. So yeah. Then several weeks later, I went to see the neurologist. He wanted to order an MRI again. I told him about what happened the last time I went to get one, and he said we can try a CT scan since they're over quicker. I got that done, and he said it looked normal except there was some cerebral atrophy. He just shrugged it off as insignificant, though. Then he said, "Well, I don't want to put you on any medications at your age, so let's just wait 5 months, and then we'll see how you feel." I told him I've been having issues for almost a decade, so I didn't see the point in sitting around for 5 months waiting for a miracle cure, and he just said, "I understand that, but I don't want to put you on a bunch of medications."
I left the office very frustrated and emailed a local acupuncturist asking if he thought his services could help me since apparently my neurologist just wanted me to sit around and continue to suffer for 5 months anyway. He seemed confident he could help, so I gave him a try. I went to his acupuncture sessions and took the Chinese herbal medicine he gave me for about 3 months, but I didn't feel like I was seeing any benefit and stopped going to see him. He said I didn't really give Chinese medicine a fair shot and can't expect to be cured of a 9-year problem in 3 months, but his services are expensive, and I can't afford to continue to toss money at something I don't feel is helping me at all. One thing he did mention to me, however, is that a lot of my symptomology is consistent with chronic Lyme disease, so I began looking into that as an option after reading several people's stories and realizing that they DO sound a lot like me.
I went to a cardiologist about the chest pain I was having somewhere in there as well. He did an ultrasound of my heart and a stress test and said they both looked fine and he "didn't feel he had to run any further tests given my age," so I think I'm done with him too.
I asked my GP for a referral to another neurologist and just began seeing him a few weeks ago. He's going to do an MRI (this time I have to force myself to do it) and said he's going to do some other testing if that comes back normal because it could be a "structural problem." He's super booked and doesn't have a lot of availability, though, so I can't see him again until January. I asked him if he would test me for Lyme disease while I was there, but he said no because only people in New Hampshire get Lyme (completely not true by the way. ugh). About a month earlier, I had called the Georgia Lyme Association and asked them if there were any Lyme specialists in my area I could go see, and they said there weren't, but there was a doctor with a walk-in clinic who had been willing to authorize Lyme testing for patients in the past. The problem was he didn't take insurance, and he also has TERRIBLE online reviews. I figured I just needed him to sign the paper, though, so I went to go see him. He was SUCH a jerk to me; I never want to see his face again. He did run the test, however, so now I'm waiting on those results. I'm waiting to hear from the imaging center to schedule my MRI for the neurologist, too. It's been weeks, and I haven't heard anything, argh.
So yeah, I'm still here. Still frustrated with no answers. The good news is I'm surviving, though, I suppose. :)
Thanks for posting your story. I hope and pray you find some answers. They are out there. I have had so many wonderful doctors but some who made me feel like I was making things up but we later found they were true. You are brave and it sounds like you might have a doctor who you can work with when you do get to see him..we all feel like giving up knocking on doctors doors but keep hoping..it will get better.
Adventurer
Adventurer
Hi adventurer. Thank you for reading, and thank you for your kind response!
Yes, the doctors who make me feel like I'm making things up are the worst, not only because they make me question myself, but because they give people in my life reason to accuse me of making things up to get attention or whatever, too. Like my dad is completely convinced there's NOTHING wrong with me, and every time a doctor tells me all of my tests look fine, he feels as though he has further proof that I'm just lying about everything. And yes, it's very tempting to just give up, but every time I try to, I realize I can't because I'm only 23, and I really don't want to live the rest of my life so uncomfortable like this.
Thank you for your encouragement! Best wishes to you. :)
Yes, the doctors who make me feel like I'm making things up are the worst, not only because they make me question myself, but because they give people in my life reason to accuse me of making things up to get attention or whatever, too. Like my dad is completely convinced there's NOTHING wrong with me, and every time a doctor tells me all of my tests look fine, he feels as though he has further proof that I'm just lying about everything. And yes, it's very tempting to just give up, but every time I try to, I realize I can't because I'm only 23, and I really don't want to live the rest of my life so uncomfortable like this.
Thank you for your encouragement! Best wishes to you. :)
Your MRI experience reminded me of my first one. I did make the effort and allow them to put me in the tube but I totally panicked and they pulled me out immediately. I refused to have an MRI until the neurologist & NS suggested I try medication to make it through. I now take medication before I have to have an MRI and have someone drive me there and back and then sleep till the medication wears off. It is the only way I can make it through an MRI. It isn't for everyone but I have to have the MRI and an open MRI is not an option for the NS and the type of "pictures" he wanted to get.
Thank you for sharing your experience, STL5. :) I *think* I'm past my apprehension about getting medical testing done. It still makes me a bit nervous, but I used to be to the point where I wouldn't even let my GP run basic lab work because I was afraid of what she'd find. I've gotten a lot of tests done since, so I'm hoping I'll be okay with the MRI this time around. They did offer me Valium, but that doesn't help much when you're afraid of psychiatric drugs, too! My appointment is now set for next Wednesday, so we shall see.
hey freefallin,
i just wanted to let you know how similar our experiences were- i'm 22 years old (will be 23 in a few months) and have been experiencing constant symptoms for 2 years, but i think my story goes back to when i was 16. i was volunteering abroad and bonked my head really hard and experienced head pressure and ringing in my ears for 8 months. then stuff seemed to settle down, i went off to college, and a few years ago stuff started up again- only 1000 times worse. this time i was actually studying abroad in europe (coincidence) when i started getting crazy neuro symptoms (tingling in my face, weakness and weird sensations in my arms and legs) and a lot of crazy symptoms. i came home and immediately sought doctors care, and they claimed it was all anxiety, bc i had had symptoms when i was abroad a time before so they thought when i traveled i got anxious. only problem was that after getting home i felt way worse, and i didnt think it was anxiety. so basically i have had terrible pressure headaches, neck and arm pain, tingling sensations, changes with my gag reflex, fatigue, gasping for air when sleeping and a ton of problems for 2 yrs. a family friend brought up lyme disease and i had my blood tested at multiple labs. the first few were negative, then i sent it to a popular lab out of california (igenex) and got a positive. so i started antibiotics and was off and on antibiotics for over 6 months. had an allergic reaction during that time, and just noticed i wasnt improving that much. anyways... long story short, just recently found out my neuro didnt report or think my chiari was significant that came up on 2 mris, but now after 2 years i am finally seeing a neurosurgeon in 2 weeks for hopefully more testing. ive seen every specialist out there and tried the lyme antibiotics- my advice for you, dont start long term antibiotics unless you really think its lyme and rule everything else out. i think the antibiotics damaged my GI tract and caused more problems! hope you get answers soon!!! and i know how you feel about MRIs... ive had 5 in the last year and have more and more anxiety each time :( anyways, i know sometimes it feels good to know others are goin through similar experiences. dont give up, and keep seeing doctors til they figure it out! have you had any results saying you have a chiari?
i just wanted to let you know how similar our experiences were- i'm 22 years old (will be 23 in a few months) and have been experiencing constant symptoms for 2 years, but i think my story goes back to when i was 16. i was volunteering abroad and bonked my head really hard and experienced head pressure and ringing in my ears for 8 months. then stuff seemed to settle down, i went off to college, and a few years ago stuff started up again- only 1000 times worse. this time i was actually studying abroad in europe (coincidence) when i started getting crazy neuro symptoms (tingling in my face, weakness and weird sensations in my arms and legs) and a lot of crazy symptoms. i came home and immediately sought doctors care, and they claimed it was all anxiety, bc i had had symptoms when i was abroad a time before so they thought when i traveled i got anxious. only problem was that after getting home i felt way worse, and i didnt think it was anxiety. so basically i have had terrible pressure headaches, neck and arm pain, tingling sensations, changes with my gag reflex, fatigue, gasping for air when sleeping and a ton of problems for 2 yrs. a family friend brought up lyme disease and i had my blood tested at multiple labs. the first few were negative, then i sent it to a popular lab out of california (igenex) and got a positive. so i started antibiotics and was off and on antibiotics for over 6 months. had an allergic reaction during that time, and just noticed i wasnt improving that much. anyways... long story short, just recently found out my neuro didnt report or think my chiari was significant that came up on 2 mris, but now after 2 years i am finally seeing a neurosurgeon in 2 weeks for hopefully more testing. ive seen every specialist out there and tried the lyme antibiotics- my advice for you, dont start long term antibiotics unless you really think its lyme and rule everything else out. i think the antibiotics damaged my GI tract and caused more problems! hope you get answers soon!!! and i know how you feel about MRIs... ive had 5 in the last year and have more and more anxiety each time :( anyways, i know sometimes it feels good to know others are goin through similar experiences. dont give up, and keep seeing doctors til they figure it out! have you had any results saying you have a chiari?
So..I am wondering...how u feel now that u have opened up that side u felt would be an annoyance....do u see that u are not, and welcomed here and so many can related to what u r going thru....I hope u will continue to share ur journey with us, we all care and..... it may help others along the way : )
selmaS- It has been really nice to discover what a supportive and welcoming bunch the chiari community is. I'm really glad you decided to stop by my other journal entry and ask me to post over there. It really does seem as though people on other forums, including several Lyme forums I've posted on, just want to get rid of me and don't want to hear about it after a while, so it's really helpful to have people willing to listen. Sometimes, that's the biggest thing I need. Thank you!
No worries....we r all use to getting the brush off by Drs, we certainly can not do that to each other...we r here for u.
Reposting this because I noticed several typos in my original response: What does MedHelp have against an "edit" button?
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Teeners- Wow, your situation DOES have so many similarities to mine! I, too, got tested through IGeneX Labs because I've been warned by so many people in the Lyme community to stay away from other labs due to faulty criteria and such. However, it definitely has been in the back of my mind all along that, even if I do get a positive test through IGeneX, I still can't be fully confident that I have my answer due to all of the controversy surrounding Lyme. Once, I read something claiming that somewhere around 98% of people who get tested through IGeneX test positive, so it would just be really hard for me to accept that I'm infected with Lyme and give up pursuing alternative options because who knows. I hate that it has to be so complicated. Plus, yeah, I'm kind of wary of the whole long-term antibiotic thing. If I get a positive test, I think I'd try the herbal stuff I was doing for a while longer first just to see if I eventually began to feel better. Supposedly the herbs have antibiotic properties anyway. Thank you for sharing your precautions about the antibiotics. I hear you.
Also, I'm so sorry that your neuro never thought to tell you about your chiari! I've heard so many stories like that, and it makes me so upset. People have a right to know what's going on with their bodies even if their doctors find something they don't think is significant! Like, I used to have a friend who had a wide array of neurological symptoms for many years, had a bunch of testing done, and then found out later that her doctor detected a pituitary tumor on a scan but thought it was small enough that he didn't have to bring it up. What the heck!
Thank you so much for sharing your story. It's helpful to know there are others out there like me and I'm not just some sole freak show. I hope the neurosurgeon you're seeing soon will be able to help you out! Best of luck :)
To answer your question, no I haven't had anything show I have chiari yet. However, I have an MRI scheduled next Wednesday, so we shall see. :)
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Teeners- Wow, your situation DOES have so many similarities to mine! I, too, got tested through IGeneX Labs because I've been warned by so many people in the Lyme community to stay away from other labs due to faulty criteria and such. However, it definitely has been in the back of my mind all along that, even if I do get a positive test through IGeneX, I still can't be fully confident that I have my answer due to all of the controversy surrounding Lyme. Once, I read something claiming that somewhere around 98% of people who get tested through IGeneX test positive, so it would just be really hard for me to accept that I'm infected with Lyme and give up pursuing alternative options because who knows. I hate that it has to be so complicated. Plus, yeah, I'm kind of wary of the whole long-term antibiotic thing. If I get a positive test, I think I'd try the herbal stuff I was doing for a while longer first just to see if I eventually began to feel better. Supposedly the herbs have antibiotic properties anyway. Thank you for sharing your precautions about the antibiotics. I hear you.
Also, I'm so sorry that your neuro never thought to tell you about your chiari! I've heard so many stories like that, and it makes me so upset. People have a right to know what's going on with their bodies even if their doctors find something they don't think is significant! Like, I used to have a friend who had a wide array of neurological symptoms for many years, had a bunch of testing done, and then found out later that her doctor detected a pituitary tumor on a scan but thought it was small enough that he didn't have to bring it up. What the heck!
Thank you so much for sharing your story. It's helpful to know there are others out there like me and I'm not just some sole freak show. I hope the neurosurgeon you're seeing soon will be able to help you out! Best of luck :)
To answer your question, no I haven't had anything show I have chiari yet. However, I have an MRI scheduled next Wednesday, so we shall see. :)
Freefallin: We just found out my daughter Katie has Chiari at age 16. Im talking about a soccer player, ran track and cross country, in many school clubs, and a straight A student, and wants to be a surgeon! She was a healthy and happy teen....until she woke up on 10/9! Our Hell began....She had woke up with a terrrible headache and stomach ache so I didnt think much of it at first she stayed home all week from school but her pain were getting worse so by Wednesday that week I took her to the Family Dr. (saw the NP) THey gave a Z-pack but by Friday she was even worse so I called back, they then decided to help me at least get her through her Sweet 16 party that was the next day so ordered Carafate and Tramadol. She barely made it through the weekend and did try to push herself to go to school on Monday (which started the seizure activity and staring spells), but by Wednesday the following week back to the dr..this time he immediately ran a CT, that was normal, and a ton of labs, again all normal. By 10/20 when we were getting ready for my fathers wedding, Katie fell to the floor screaming holding her head! I gave her extra meds that was prescribed and tried ice packs...they added even more pressure, she was screaming at me to stop it and make the swelling stop. Said it felt like a horror movie in her head like something was clawing its way out of her brain.....at this point I was freaked out! After 2 hours she was calmed enough to make the trip over there and on the way there the pain started shooting down her spine. The next day was no better so we went to ER and they said get her in neuro NOW!
The problem was where we live no one would see her shes under 18 so Monday 10/22 we were off to ST Louis. STL childrens admitted her immediately with a pain level of 7 out of 10 and ran tons of tests (MRI/MRA, EKG, EEG, Holter, labs). Her DX was migraines, but they accidentally found the 7mm chiari but there no way that was causing her pain. We went through their entire protocol for migraines and was discharged 7 days later with no answers and a pain level of 9/10! I forced the discharge and told that doc that hes the worst NL Ive ever seen if he stepped foot into this room he would be laying in ICU with his patients.....needless to say Mommy here snapped.....my daughter was laying here crying and screaming in pain and I cannot do anything to help her except cry with her and tell her Im sorry and I love her.....
So before I left the hospital I did my research (got the chiari DX 4 days before leaving)....I learned everything I could retain! I was emailing hospitals all over the country! Dr David Frim in Chicago IL emailed me back on a Friday at 12:23.am!!! Hes a dedicated guy! Told me to contact his office for an appt if nothing in STL worked.
Within 2 days of being home she had appts scheduled in Milwaukee at the WI Chiari Center, Cleveland Clinic in Ohio, and Dr Frim in CHicago, another dr in Stl and one in Memphis! Memphis and cleveland we canceled cause she couldnt make the trip she was to bad on those days..
The best person we have seen has been in STL at Cardinal Glennon hospital! We are going to Milwaukee on January 15th.
You are not alone in this fight! From what I can tell ppl who are DX with this or is wrongly DX with other things for years before discovering the chiari have a harder time because its frustrating to you and the family (finding someone that believes you or that has knowledge to help)! Since Katie got sick, shes a different person, shes very depressed too now. She feels her life has just stopped because she cannot go to school right now either. HANG IN THERE.....FIGHT FOR THE RIGHT DOCTORS AND DO YOUR TESTS.....AND MOST OF ALL WHEN THE DAY COMES THAT YOU ARE FRUSTRATED AND CONFUSED YOU GET ON HERE AND ASK THE PPL ON THIS SITE FOR HELP! I DID!!! BEST THING I DID FOR KATIE WAS GET MYSELF UNDER CONTROL....AND THIS SITE HELPED ME TO DO THAT, JUST KNOWING AND UNDERSTANDING THAT OTHERS FELT THIS WAY TO AND THAT I HAD SUPPORT!!!
I will not lie to you ....you have a long journey ahead of you, BUT you can live a mostly normal life if you can get DX and get the right meds. Yes in SOME cases surgery is needed but the surgeon we saw said only 10-15% of his chiari patients need surgery, most of the time we can help with meds!!! So dont get anxious over what is unknown, only think of the facts you are given......
I PRAY THAT YOU FIND THE RIGHT DOCTOR AND CAN GET BACK TO BEING YOU!!!!!
The problem was where we live no one would see her shes under 18 so Monday 10/22 we were off to ST Louis. STL childrens admitted her immediately with a pain level of 7 out of 10 and ran tons of tests (MRI/MRA, EKG, EEG, Holter, labs). Her DX was migraines, but they accidentally found the 7mm chiari but there no way that was causing her pain. We went through their entire protocol for migraines and was discharged 7 days later with no answers and a pain level of 9/10! I forced the discharge and told that doc that hes the worst NL Ive ever seen if he stepped foot into this room he would be laying in ICU with his patients.....needless to say Mommy here snapped.....my daughter was laying here crying and screaming in pain and I cannot do anything to help her except cry with her and tell her Im sorry and I love her.....
So before I left the hospital I did my research (got the chiari DX 4 days before leaving)....I learned everything I could retain! I was emailing hospitals all over the country! Dr David Frim in Chicago IL emailed me back on a Friday at 12:23.am!!! Hes a dedicated guy! Told me to contact his office for an appt if nothing in STL worked.
Within 2 days of being home she had appts scheduled in Milwaukee at the WI Chiari Center, Cleveland Clinic in Ohio, and Dr Frim in CHicago, another dr in Stl and one in Memphis! Memphis and cleveland we canceled cause she couldnt make the trip she was to bad on those days..
The best person we have seen has been in STL at Cardinal Glennon hospital! We are going to Milwaukee on January 15th.
You are not alone in this fight! From what I can tell ppl who are DX with this or is wrongly DX with other things for years before discovering the chiari have a harder time because its frustrating to you and the family (finding someone that believes you or that has knowledge to help)! Since Katie got sick, shes a different person, shes very depressed too now. She feels her life has just stopped because she cannot go to school right now either. HANG IN THERE.....FIGHT FOR THE RIGHT DOCTORS AND DO YOUR TESTS.....AND MOST OF ALL WHEN THE DAY COMES THAT YOU ARE FRUSTRATED AND CONFUSED YOU GET ON HERE AND ASK THE PPL ON THIS SITE FOR HELP! I DID!!! BEST THING I DID FOR KATIE WAS GET MYSELF UNDER CONTROL....AND THIS SITE HELPED ME TO DO THAT, JUST KNOWING AND UNDERSTANDING THAT OTHERS FELT THIS WAY TO AND THAT I HAD SUPPORT!!!
I will not lie to you ....you have a long journey ahead of you, BUT you can live a mostly normal life if you can get DX and get the right meds. Yes in SOME cases surgery is needed but the surgeon we saw said only 10-15% of his chiari patients need surgery, most of the time we can help with meds!!! So dont get anxious over what is unknown, only think of the facts you are given......
I PRAY THAT YOU FIND THE RIGHT DOCTOR AND CAN GET BACK TO BEING YOU!!!!!
Hi Angie! First, thank you so much for sharing your story and for your encouragement! I'm glad to hear daughter was finally able to get an accurate diagnosis and that she's lucky to have somebody willing to fight for that diagnosis for her. I can definitely empathize and relate to her feeling that her life has just stopped. That's exactly how I feel; it's very disheartening to see all of your peers making something of their lives, while your life dreams have all been replaced by your only dream of getting better.
I will say that there's no sense in me jumping to conclusions that I have Chiari since I don't even have my MRI until this coming Wednesday. I'm honestly hoping that is shows no evidence of Chiari because I'm on my own with all of this...don't have the money to travel to different states to see specialists. My dad doesn't even believe there's something wrong with me and hasn't paid for any of my doctors visits and such. He's not under obligation to, of course, it's just definitely difficult to know what to do because my money only stretches so far when I'm making $9/hour.
Thank you again. I wish you and Katie the best! You've handled her situation so well thus far!
I will say that there's no sense in me jumping to conclusions that I have Chiari since I don't even have my MRI until this coming Wednesday. I'm honestly hoping that is shows no evidence of Chiari because I'm on my own with all of this...don't have the money to travel to different states to see specialists. My dad doesn't even believe there's something wrong with me and hasn't paid for any of my doctors visits and such. He's not under obligation to, of course, it's just definitely difficult to know what to do because my money only stretches so far when I'm making $9/hour.
Thank you again. I wish you and Katie the best! You've handled her situation so well thus far!
Freefallin....we do have a link to Clinical trials, so if u need medical care and do not have the support of family it may be a way around that....just a thought..
I never thought about that possibility. I'll have to look into that. Thank you, Selma :)
Thank you for sharing your story honey. It's so hard to feel you dont have support especially when these drs try to make you feel you're crazy. The first NS i saw told me norhing was wrong with me, that I was too young to file for disability (had to bc my ltd thru work required it). When i asked her what was causing my whole body numbness she responded idk just tell yourself its not your back and you'll be fine. However she did point to my brain on the mri and say something under her breath but basically kicked me out of her office. I went to another NS who explained chiari to me but said he wasnt all that familiar with it and couldnt say it was causing my problems. Some of my family members got together to discuss my situation and 2 yrs ago my sister told me about this and said "lets face it, there's nothing wrong with you. You're just a hypochondriac". So I understand lack of support.
However i trusted my gut. No one knows my body better than i do. Researched a lot. Be careful bc a lot of stuff you can find online can be mostly horror stories, which will scare you more. This community has been helpful and supportive. Dont give up. We all have our own anxiety struggles. You will find support here and if you dont, stick to the ones who offer it. Pls keep us posted on how your MRI goes. Some will offer tv or music while inside the machine. Or just close your eyes and try to imagine the noises you hear as being a variation of something you like - music animals or movies whatever. The MRI wont hurt you. Imagine yourself wrapped in a snug blanket thats protecting you. Most places will give you a blanket and there's also a button to push if you need to stop for a bit. I'll be praying for you friend. BTW I'm 41 now had the chiari surgery in Jan this yr and its not the worst thing you can go through. Not fun by any means. Your attitude about it can help or hurt so try to keep positive honey. We're here for you. Xoxo
However i trusted my gut. No one knows my body better than i do. Researched a lot. Be careful bc a lot of stuff you can find online can be mostly horror stories, which will scare you more. This community has been helpful and supportive. Dont give up. We all have our own anxiety struggles. You will find support here and if you dont, stick to the ones who offer it. Pls keep us posted on how your MRI goes. Some will offer tv or music while inside the machine. Or just close your eyes and try to imagine the noises you hear as being a variation of something you like - music animals or movies whatever. The MRI wont hurt you. Imagine yourself wrapped in a snug blanket thats protecting you. Most places will give you a blanket and there's also a button to push if you need to stop for a bit. I'll be praying for you friend. BTW I'm 41 now had the chiari surgery in Jan this yr and its not the worst thing you can go through. Not fun by any means. Your attitude about it can help or hurt so try to keep positive honey. We're here for you. Xoxo
Thank you for your post, BB11, and I'm sorry if I sound like a debbie downer in my response right now; I'm really frustrated at the moment because of my family's usual crap. I can completely relate to being told "You're just a hypochondriac." I get it every day to the point that sometimes I think I'm just crazy. After 10 years of being told there's nothing wrong with you and you need to quit imagining things, you start to believe it. It's to the point where I'll tell a doctor about a symptom I've been having and then feel guilty because I feel like I just lied to them since everyone keeps telling me I don't REALLY have these health problems. The other day, my sister asked me to stop scheduling doctor's appointments so that she could have the car more often. This is all one big joke to her; she thinks I'm just doing it for fun. She has the car ALL of the time. The only time I'm ever "allowed" to leave the house is when I have an appointment, and she wants to take that away from me too. I tried signing up for local yoga classes just so that I would have something to do other than working (I work online from home) and going to doctors, and that wound up being a waste of $180 because my sister never lets me have the car to go to the classes. She thinks it's perfectly reasonable for me to spend all of my time in my bedroom by myself as long as she gets to do whatever she wants to do all of the time.
Anyway, yeah I'll def post an update once I get the results back of the MRI if I can even do it. I'm starting to get really anxious about it because being in enclosed spaces like that with a bunch of noise especially makes me feel really dizzy and off-balanced, and I don't know if I'm capable of staying still that long. We'll see. Thank you for your encouragement!
Anyway, yeah I'll def post an update once I get the results back of the MRI if I can even do it. I'm starting to get really anxious about it because being in enclosed spaces like that with a bunch of noise especially makes me feel really dizzy and off-balanced, and I don't know if I'm capable of staying still that long. We'll see. Thank you for your encouragement!
Don't apologize sweetie. Not here. You will get thru this. Please don't lose hope. Can you get a friend to drive you? Check to see if you have any services in your area that can drive you around. Some places have services that transport people that cannot otherwise get around. Dealing with an unsupportive family can push you into severe depression. Try to surround yourself with supportive people anyway you can. Staying connected here is a good start. Your sister's actions toward you have more to do with her than with you. Maybe she is fearful or maybe she's just fed up bc a dr hasnt been able to definitively give you an answer. My best advice is TRUST YOURSELF! You are the one having these experiences not your sister. Not your family. If you cant get an answer from a dr keep searching jntil you find one!
Give the MRI a try. Even if you can only sit thru just a few minutes. The ppl doing the scans are used to some ppl having problems with them Ask them to let you know how much longer until they get the first picture. They take several. If you need to ask for a break. If you know you have only 30 seconds left til they get what they need you may have a better go at it. Before going in, breathe. Close your eyes while sitting. Dont cross your legs keep your hands open in your lap. Breathe in relaxation and breathe out fear. Say this to yourself. Do it at least 3 times. Practice doing it now before you get there to help keep you calm. When you breathe in try to push your stomach muscles out so you are breathing deeper into your stomach than just normal breathing which usually only goes as deep as the chest wall. Its easiest to practice this while laying down. Thats why I suggest starting now. The more you do this, the calmer you will feel. If you are focusing on your breath, you cant focus on the other stuff thats why saying "breathe in relaxation, breathe out fear" is helpful. You can say whatever positive words you want on the inhale, but make sure on the exhale you say something like breathe ot fear, anxiety, dizziness whatever feeling you want to leave your body. Hope this helps.
I'll be thinking of you and praying for you. Xoxo
Give the MRI a try. Even if you can only sit thru just a few minutes. The ppl doing the scans are used to some ppl having problems with them Ask them to let you know how much longer until they get the first picture. They take several. If you need to ask for a break. If you know you have only 30 seconds left til they get what they need you may have a better go at it. Before going in, breathe. Close your eyes while sitting. Dont cross your legs keep your hands open in your lap. Breathe in relaxation and breathe out fear. Say this to yourself. Do it at least 3 times. Practice doing it now before you get there to help keep you calm. When you breathe in try to push your stomach muscles out so you are breathing deeper into your stomach than just normal breathing which usually only goes as deep as the chest wall. Its easiest to practice this while laying down. Thats why I suggest starting now. The more you do this, the calmer you will feel. If you are focusing on your breath, you cant focus on the other stuff thats why saying "breathe in relaxation, breathe out fear" is helpful. You can say whatever positive words you want on the inhale, but make sure on the exhale you say something like breathe ot fear, anxiety, dizziness whatever feeling you want to leave your body. Hope this helps.
I'll be thinking of you and praying for you. Xoxo
Nah, I don't really have any friends left to ask to drive me because most of them stopped talking to me once I wasn't able to go out and do a lot of things with them anymore. Even if that weren't the case, I wouldn't ask anyone to be my chauffeur, though. I don't like to inconvenience people, and plus, I shouldn't *have* to rely on other people considering that car doesn't belong to my sister. The not having the car part isn't even what bothers me the most. It's the way my family treats me like a reject who doesn't matter as much as the rest of them, if at all. There aren't any transportation services available either because I live in such a small town. It's okay, though. I'll survive.
I'm definitely going to give the MRI a try. I'm just really afraid of what's going to happen when we get there. I don't think my response in those situations is really an anxiety thing. I mean, there's a degree of anxiety, but I also just think that I'm really sensitive to certain types of stimuli because of whatever's going on with my brain. I've tried all of those breathing techniques that people recommend for coping with anxiety, and they make me feel worse because I'm trying to force my body to stop feeling something it can't stop feeling. I don't know how to explain it, and I'm feeling really brainfoggy right now too, so I'm going to stop trying.
Thanks for your prayers and thoughts!
I'm definitely going to give the MRI a try. I'm just really afraid of what's going to happen when we get there. I don't think my response in those situations is really an anxiety thing. I mean, there's a degree of anxiety, but I also just think that I'm really sensitive to certain types of stimuli because of whatever's going on with my brain. I've tried all of those breathing techniques that people recommend for coping with anxiety, and they make me feel worse because I'm trying to force my body to stop feeling something it can't stop feeling. I don't know how to explain it, and I'm feeling really brainfoggy right now too, so I'm going to stop trying.
Thanks for your prayers and thoughts!
Sorry sweetie. Just know you are NOT a reject. I too lost a lot of "aquaintances" bc real friends dont leave. It just showed who my friends are. The breathing technique can help with anxiety but it can also work in other areas. If you think of it while in the MRI try it if your up to it. Do what works for you. Tell yourself if I can make it thru this, my family may turn a corner and start to support me The only stimuli i had was going into close tight quarters, and the sounds, which can be bothersome. They do provide ear plugs. Ask if they can give you head phones to listen to music or watch tv. I was offered both those. Plus the longest one i had was 2 hours and they told me how long each set was, how much time was left for each one and gave me a button to press if at anytime i felt uncomfortable. You can do this. I too get brain fog ( and what i call brain zaps from weining off a med) Am very sensitive to light and sounds as well.
Good luck.
Good luck.
Thanks for your kind words :) I probably won't try the breathing thing because I know from trying it MANY times in the past, it makes me feel worse, but I'll see if they'll let me have music or something. :)
Good luck today kiddo. Keep us posted on how you did with the MRI.
Thank you for checking in. :) I almost didn't get it done. She pushed me into the tube, and I freaked out and told her to take me out NOW. So she called my neuro and asked if a CT scan with contrast would be sufficient, and he said no. She wanted me to reschedule and come back with somebody who could drive me so they could give me Valium, but I didn't want to do that. So I freaked out for a while longer and then told her to just ignore me and do it already. I had to push the button to ask her to take me out once, and I was so dizzy I could barely walk at the end, but it's done, and now I wait and freak out every time the phone rings. :)
Congratulations kiddo. You made it. No reason to freak out now. At least You'll get an answer. Did you get a copy of your mri. They should give you a disc. If not call back and ask for a copy. You did good. You weren't the first or last person to have a hard time with it. Give yourself a pat on the back. You did it!!! Try to focus on that. Proud of you. Please keep us posted on your results. Xoxo.
No, they gave me a copy to give to my neurologist because he asked me to get one for him, and I dropped it off at his office right away. I don't want that in my possession right now because I know that, if I have a copy on me right now, I'm going to look at it myself and freak myself out unnecessarily thinking everything looks abnormal. I'll get a copy of it, as well as a copy of my old CT scan and a copy of my x-rays that I had done last week after the results are in. I just don't want one to torture myself with now! Thanks for the congratulations; you've been very supportive. :)
Well, I haven't heard anything from either the imaging center or my neurologist, so I suppose no news is good news. Well, not really in my case because no news means I still have zero answers, but I suppose it's better than them calling and saying I'm dying.
Of course, I had to drop the images off at my neuro's office because I couldn't afford to have the MRI done there and had to have it done at another place. So who knows if the front desk lady even gave him the images. The communication between all of these medical people is SO horrible, and I've learned that if I want anything done, not just right, but AT ALL, I have to do it myself. They told me they would call and order the MRI for me. Two weeks later, I learned that they just forgot about it, and if I hadn't called to remind them I still needed to have it done before my next neuro appointment, I never would have gotten it. Ridiculous crap like that. I wish they would have let me hand the images directly to the doctor so I knew he had them, but of course, they'd prefer you go through 20 different people for everything.
Of course, I had to drop the images off at my neuro's office because I couldn't afford to have the MRI done there and had to have it done at another place. So who knows if the front desk lady even gave him the images. The communication between all of these medical people is SO horrible, and I've learned that if I want anything done, not just right, but AT ALL, I have to do it myself. They told me they would call and order the MRI for me. Two weeks later, I learned that they just forgot about it, and if I hadn't called to remind them I still needed to have it done before my next neuro appointment, I never would have gotten it. Ridiculous crap like that. I wish they would have let me hand the images directly to the doctor so I knew he had them, but of course, they'd prefer you go through 20 different people for everything.
Not uncommon. I had a friend have the exact same problem. Just try to relax and if you dont hear anything by the middle or end of next week, give them a call. No sense in getting yourself worked up. The waiting is always the worst but its the weekend so try to enjoy it. Xoxo
Have you gotten any news?
No, sorry. I called on Wednesday and asked if the neurologist had the images because I wanted to make sure they even made their way into his hands, and the receptionist said they were still "in his box." So the actual neurologist hasn't even reviewed anything. I'm guessing nothing was really found since the radiologist does the report the same day, though...nothing life threatening at least.
Either that or he's backed up with the holidays, but its a good way to look at it. How are you feeling?
I think such is the case with the neurologist. The radiologist, however, is always on top of things at the imaging center where I had the scan done. They always complete reports on the same day there.
I've been better. Brain foggy and out of it, and my eye has started bothering me...I'm scheduling an appointment with a GP on Monday because I can feel a hard bump under my eyelid, and the eye isn't focusing well and making me nauseous. Could be worse, though. I'll survive. Thanks for checking in and hope you're having a nice weekend!
I've been better. Brain foggy and out of it, and my eye has started bothering me...I'm scheduling an appointment with a GP on Monday because I can feel a hard bump under my eyelid, and the eye isn't focusing well and making me nauseous. Could be worse, though. I'll survive. Thanks for checking in and hope you're having a nice weekend!
Keep me posted. Feel better!!!
Yes, Ma'am. :) Might not have any updates to provide until January 2nd (my neuro appointment) at this rate, though!
I understand. If I dont hear from you have a very Merry Christmas ( or holiday, whichever u celebrate).
:o)
:o)
Merry Christmas to you as well!
Small update, which is really more of a non-update. Received a phone call from my neurologist's office asking if I had the images from the MRI, so I told the woman that I had dropped those off at the office weeks ago. She said, "Oh okay, then if you dropped them off we have them. Just wanted to make sure because I'm looking at the report here and saw that the doctor requested copies of the images to go with it." Then she said he would go over the results of the MRI with me during my visit next week and that she didn't see anything too alarming in the report.
Doesn't make any sense to me. I don't see how it's possible for there NOT to be something wrong with my brain. Right now, my head is pounding in three different places. I keep typing the wrong letter and having to backspace because I can't think straight, and when I was talking to an old friend earlier, I kept pausing because I couldn't think of the words I was trying to find. In Walmart earlier, I had to look at the floor while walking through the aisles because looking up made me feel like I was going to fall. And yet nothing major is showing up on my brain scan, or so says the woman on the phone. I know it sounds weird to say I want there to be something wrong with my brain, but I just want to know what's causing all of this so I can know if anything can be done about it. Anyway, rant over. :)
Doesn't make any sense to me. I don't see how it's possible for there NOT to be something wrong with my brain. Right now, my head is pounding in three different places. I keep typing the wrong letter and having to backspace because I can't think straight, and when I was talking to an old friend earlier, I kept pausing because I couldn't think of the words I was trying to find. In Walmart earlier, I had to look at the floor while walking through the aisles because looking up made me feel like I was going to fall. And yet nothing major is showing up on my brain scan, or so says the woman on the phone. I know it sounds weird to say I want there to be something wrong with my brain, but I just want to know what's causing all of this so I can know if anything can be done about it. Anyway, rant over. :)
The woman you talked to may just be the receptionist or someone in the office. I know its frustrating. Don't give up hope. When do you see your NL? I would write down what u just posted and take notes with you to discuss what symptoms you are experiencing each day with your NL.
I see him this coming Wednesday. :) I do tell him about the symptoms. It's just that he doesn't know what to do about them if he can't even find any evidence that there's actually something wrong that's causing them. We'll see what he has to say, though. :)
Hopefully he'll be the type of dr to continue investigating or refer you to someone else. Keeping you in my prayers. xoxo
Thank you :)
I saw my neurologist earlier today. He said a UBO (unidentified bright object) showed up on my MRI. He doesn't really know what to make of it, though, and it's too small to diagnose me with MS based on it. He just wants me to have another MRI in 6 months to check if it's changed. I'm going to request a copy of the MRI images from the imagine center so I can look at it myself and see just how small it is.
Other than that, he doesn't have much to tell me. I asked if there were any types of medications he could give me to help with the cognitive difficulties, and he said not aside from dementia medicine, which he won't give me because I'm too young and not sick enough to have a diagnosis of dementia. Then he said he would order some neuropsychological testing to test my memory and such, but he doesn't usually do that for patients because he doesn't feel like it helps him help his patients in any way. He also did some blood work to check my thyroid, although I've heard that the standard thyroid tests aren't that accurate.
I don't know what else to do. I scheduled an appointment with the chiropractor I consulted with a while back. Maybe he'll have something to tell me.
Other than that, I guess I just kind of give up for now. At least I know it's probably not anything life-threatening since all of these tests keep coming back negative.
Other than that, he doesn't have much to tell me. I asked if there were any types of medications he could give me to help with the cognitive difficulties, and he said not aside from dementia medicine, which he won't give me because I'm too young and not sick enough to have a diagnosis of dementia. Then he said he would order some neuropsychological testing to test my memory and such, but he doesn't usually do that for patients because he doesn't feel like it helps him help his patients in any way. He also did some blood work to check my thyroid, although I've heard that the standard thyroid tests aren't that accurate.
I don't know what else to do. I scheduled an appointment with the chiropractor I consulted with a while back. Maybe he'll have something to tell me.
Other than that, I guess I just kind of give up for now. At least I know it's probably not anything life-threatening since all of these tests keep coming back negative.
imaginG center*
I ALWAYS misspell that word. Always.
I ALWAYS misspell that word. Always.
Geez. Did he say anything about chiari? I'm so sorry you are not getting anywhere with this. It seems to be our luck! I'm praying for you sweetie. Xoxo
Nope, didn't mention it. I appreciate you listening to my rambling and the prayers. :)
Did you ask? Feel free to msg me anytime you wanna chat.
Nah. I don't ask doctors things like that anymore. They just tell me to quit diagnosing myself with things on the internet.
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