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overheated 01-06-2009 11:41 AM

Feel out of my league and alone... Chiari related
I've had health problems my whole life, but in my mid 20's when I started to have children, things went haywire! I've been dealing with a slew of symptoms and for the most part, just chalked it up to hormones. I've had so many blood tests done and the only thing that seemed to come back consistently was low blood sugar. I saw a naturopath during my 3rd pregnancy because I was suffering pretty debilitating anxiety. She went through many of my symptoms with me and suggested that maybe I had PCOS (Polycystic ovary syndrome) which I do have all most all the symptoms for. But I've not been able to do much in diagnosing it because I'm still nursing my last baby.

I hope you all can bear with me as I try to get this all out and not ramble too much...

Anyway, last summer, I had enough! I was so tired of being sick and having migraines! I've had migraines for many years and my mother suffers from them quite severely. I've also suffered from the inability to tolerate heat. This is a major issue in my life! As a child, I LOVED to play sports but I would make myself deathly sick. I finally had to give up playing softball because I got so sick once, it scarred me! In the past 6 years, the difficulty to tolerate heat has gotten so much worse! I can't clean house, exercise, play with my kids, etc without putting myself at risk of being extremely sick. I've also been having regular migraines for the past 6-10 years. To the point that my old doctor was concerned at how much migraine meds I was taking. I was talking to my new doctor about the migraines and he said that we should find out what is causing the migraines and get to the bottom of it! YAY, right?! Well, I got on the waiting list to see a neurologist and it was a total let down!

Leading up to this appt. I started to do some research of my own to see if there were other people like me out there. Sure enough, there was! After doing some reading and following some links, I came across Chiari Malformation One. When I read the list of symptoms, my chin hit the floor! I took this information to my doctor and he wasn't sure as he didn't know much about CM1 and he felt the neurologist could look into that for me along with the migraines.

I took all my paperwork with me, highlighted all the symptoms I'm suffering and even printed off some testimonials of people who had it. I thought I was loaded and ready to go. He was a very laid back, soft spoken person, but boy did he ever make me feel like I was a nut job! He went ahead and ordered the MRI, but I don't get it until June '09 (6 months after the referral for it was made)! And he made it clear that he was only ordering the MRI to satisfy me, not because he felt I might have Chiari. At the appt. he basically asked if migraines ran in the family and from there diagnosed me as a migraine sufferer...which I already knew! LOL He gave me some sample migraine meds and shoved me out the door. I already have migraine meds that work and don't need more. I was there to find out what was causing the migraines, not be told something I already knew..."You are a migraine sufferer!". I'm worried that the MRI I have to wait 6 months for, might not show anything and then I'll be completely without any grounds to insist on further looking into this. I've read so many times how CM1 can be missed on multiple MRIs so I feel very discouraged.

I live in a small Province in Canada where there are only 2 neurologist and I supposedly had my appt. with the best of the 2 :( Our family doctors are assigned to us, so I can't just go see any doctor for a second opinion. I really feel stuck. I totally fit the criteria, in my opinion, of Chiari. Now, don't get me wrong, I pray that I DON'T have it, but my gut tells me that I'm on the right trail. Here are many of the symptoms I suffer:
Pain in the back of my skull
Neck pain
Back and spinal pain
Have a hard time bending over without my head feeling like it's going to explode with pressure
Tingling in my scalp
Burning sensations between my shoulders
Blurry vision
Ringing in my ears
Pins and needles in my scalp and my back
My hands getting weaker and weaker as time goes on. I can barely open things
Restless legs that I've had since a child
Trouble regulating body temperature
Feel like I'm choking when laying on my back
Feel like there's stuff in my throat
Sinus problems my whole life (had sinus surgery about 9 years ago)
I've always had problems with losing my balance when walking. I thought it was humorous and told people that I accidentally bumped into that I was "walking crooked"
I use to have a VERY good photogenic memory and now I can't remember hardly anything! I thought it was pregnancy brain, but it never went away after I had my children.
Drooling in sleep and very good chance I have sleep apnea
Poor circulation - cold hands and feet. I've had this since I was very young
Heavy legs
Thicking joints in my fingers
Skin problems[/LIST]...etc. There are several other symptoms, but I think you all get the point ;)

So what does one do when you live in a small area and no one seems to listen? I'm originally from the States and if I had the money, I would go see doctors in the U.S., but unfortunately that's not possible right now as my husband is not able to work due to a car accident injury.

I feel like the doctors and maybe even my friends think I'm crazy. Doctors give me that look like "you've self diagnosed yourself with something you don't have, but now you got yourself believing you have it".

Thankfully, I have a mother that has the same problems. Another thing that caught my attention is that CM1 can be misdiagnosed as Chronic Fatigue and also fibromyalgia, both of which my mother was diagnosed with. I've also read it's possible it's genetic and can run in families. I also have a brother that suffers many of the same symptoms.

Anywho...there may not be much advice that can be given, other then keep advocating for myself and not give up. So maybe support is the most I can hope for :) But if there is any advice anyone can give me, I would greatly appreciate it!!!

trigal 01-06-2009 02:15 PM

Re: Feel out of my league and alone...Chiari related
Hello Overheated!

It took me close to three years to get a proper diagnosis and I was pushed out many doors and labled as "complex migraines" whatever that is!!!! I knew differently. I was, at the time, a nationally competitve runner and duathlete and my symptoms came on during intense training or racing. I have many of the same symptoms you have and I still do.....Worse are the headaches and flashing lights in my vision with any sort of exertion.........I FINALLY got the correct diagnosis by way of my Lyme doctor ordering an MRI when my symptoms would not go away after treatment. I have a 5MM herniation, 9mm cervical syrinx and restriced CSF flow. Even with the hard core diagnosis you can still have problems with NL and NS believing chiari can and does cause many symptoms. I am heading to The Chiari Institute in Great Neck NY in 2 weeks. They one of the few places in the cournty to specialize in chiari. You may NEED to travel far to get the care you need. Be aware that not all radiologist can detect a small herniation - be sure to get copies of the actual films for the NL to see for him or herself. I have had a few Radiologist who "missed" my herniation. However, when the NL looked for himself it was easy to see. Best of luck to you! TG

overheated 01-06-2009 02:42 PM

Re: Feel out of my league and alone...Chiari related
[QUOTE=trigal;3840092]Hello Overheated!

It took me close to three years to get a proper diagnosis...[/QUOTE]

I've read that the average time it takes to get a proper diagnosis is 5 years! I feel so frustrated because I feel I'm losing valuable time with my kids. I have migraines more then not and I'm uncomfortable and in pain almost always.

Thank you for your encouraging words! I do hope I can get an actual copy of the MRI, although they've switched to a new online version of MRIs and X-rays here...where the radiologist puts the results on an online database for health care professionals to review. I would like to get a copy in case some day I can ever make it to the Chiari institute.

I also read that Chiari isn't the "rare" disorder that it was once made out to be and that it's much more diagnosed now due to MRI technology...yet many doctors and neurologist still act like it's rare and impossible for anyone to suggest they might have it :(

I've seen some mention of Lyme here on the message boards and I'm not familiar with what it is. I'm doing to do some research into that as well! I hope you get the answers you're seeking at the Chiari Institute!

Thanks again for your response :)

trigal 01-07-2009 06:36 AM

Re: Feel out of my league and alone... Chiari related
I can understand....I do not have children but I still feel like every morning that I wake up not feeling good is a day that I cannot sit at my computer and write and a day that I stuggle to see clients, a day I cannot engage in life....I am a bit fiesty by nature and decided that no matter how much pain I was in I was going to keep pushing ahead to find out what was wrong. Living in the Northeast and being a trail runner and hiker I have gotten lyme sooo many times and for a few years kept going back to "I guess is neurological lyme". I was on IV meds for lyme for a few years in 2005 and after I went off things got bad with the head pressure and flashing lights and other Chiari symptoms. I come to find that the antibiotic (Doxy) that I was on IV can increase ICP so I think that is why things got worse after treatment. Because I "look" good and healthy and am/was a fit competitive athlete (I am not willing to give that up just yet!) no one - not even a good friend of mine who is an MD thought anything was wrong...I can still hear him saying to my husband, "well she looks good and she can still run fast" - yeah with a splitting headache and flashing lights in my vision! I even had a Radiologist who did not want to do the CINE flow study because he thought my chiari was only mild and it was not necessary. When he called me "honey" I flew off the handle and I told him to do what the script ordered, I was not asking his opinion on whether the test should or should not be done and it's not honey, but Dr. ....... ( I am a clinical psychologist, Ph.D). I was having a bad day and here I had to get talked down by this idiot radiologist. He even called the NS office to confirm that I needed this. Of course the flow came back restricted - made him look good huh????;)

It is just very exhausting and while you try not to apprear dsesperate in front of the medical profession, it is important to be assertive and well informed. I find that even the way I dress has such an influence on how I am treated and when needed I refer to myself as "Dr." (and it's NOT about ego) and it did seem to help when some MD's have tried to attribute this to depression or some psychological condition. They are not Psychologist's and are not trained to assess, diagnose or treat mental health disorders and I have even said that to one or two. It has been an uphill battle but do not give up! If you have to go to TCI or to CO. then that is what you may need to do. Keep doing your research and keep searching for a Dr. that will listen and that knows about this condition. There will be days of dissapointment and that is normal and that is okay - you will rebound and get done what you need to get done. Just know that you are not alone and there are others who are going through what you are.....Don't lose faith in yourself and do not doubt yourself - you know yourself better then anyone so try to find the energy to get the proper care you need! Be Well, TG

overheated 01-08-2009 08:02 AM

Re: Feel out of my league and alone... Chiari related
I never had Lyme disease so at least I think I can rule that out. I know what you mean about being told you look healthy. While I'm not in the shape of my life, I got a similar comment from the neurologist. You mentioning that reminded me of it. He said something to the effect that I didn't look like someone with Chiari? I wasn't aware that Chiari had physical appearance traits?! lol Last time I checked, it took an MRI to tell if one had Chiari!

Anyway, I went to the Chiropractor yesterday to address a pain I have in my upper spine area (which ended up being a rib in my back that is seized to my spine) and I was talking to him about Chiari. He was familiar with it because he had a professor that was very knowledgeable about it and often talked about it in his teachings. My Chiro asked me what some of my symptoms were and when I told him a few and also told him how the neurologist totally blew me off, he was speechless! He said that he should never have blew off all those symptoms. He asked if I told the neurologist all these symptoms and I was like "Yes! I printed off many pages of Chiari documentation and highlighted all my symptoms for him" and again he was shaking his head. He recommended I get a recommendation to see a neurosurgeon out of Province. He also mentioned that he would try to get in contact with his old Professor and see what help he might be able to offer! It felt SO GOOD to finally have someone take me seriously!

I was also talking to my mother last night and again telling her some of the odd symptoms I'm experiencing and she agreed that they are not migraine symptoms, like my hands and legs going numb, heavy legs, feeling like my throat gets closed off when I lay on my back, pain specifically in the back of my skull, etc.

So I'm going to call my family doctor and see about getting on a waiting list for an out of Province NS and hopefully see one after I get my MRI results back in June/July.

It's discouraging to hear how someone as yourself can even be blown off by doctors, but at the same time, encouraged to see you stand up to them and get what needs to be done, done!

I'm going to pray about it and continue to push forward :)

Thank you again for all your encouragement! Take care!

prtybleys 01-14-2009 11:28 AM

Re: Feel out of my league and alone... Chiari related
It took a year and a half for me to get diagnosed, the only way they can be sure is to get an MRI. It was one of the most horrible times in my life and it will only get worse with time. You will continue to get more and more symptoms. I had surgery about 5 years ago and had a 100% recovery!!! Don't give up, make someone send you for an MRI. Good Luck!!!

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