DX with other conditions before finding Chiari?

General
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I am just curious if anyone else was dx with other condtions before being dx with chiari?

I was dx in 2009 with Fibromygia, Degentative disc disease, and osteroarthritis of the cervical and lumbar areas.

On Feb 2013 I was dx with chiari type 1 with "progressing symptoms". When ordering medical records for my SS case I found that in Jan 2010 that the MRI of the brain showed I had Chiari Malformation Type 1 with no symptoms listed under #2. During the time my primary dr was trying to rule out MS. (with all the pains I was suffering MS and Lupus was ruled out and the Fibromygia dx given).

So does Fibromygia and Chiari go hand in hand or was it a mis-dx??

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Hi..great question! Thanks,,,I hope others will chime in on their own experiences with Fibro and Chiari.

Here is a bit of my story....I was 1st diagnosed with Lyme Disease, which can cause many of the exact same Sx;s as Chiari..so, I 1st went through 3 or so mths of of an anti biotic cocktail,,the onlky thing that was helped by this treatment was the wicked joint pain and swelling of my ankles,

So..then I went to a NL for the Chiari....unless, he was not educated in Chiari, stated that Chiari was NOT the cause of all my Sx's..went to yet another NL...same deal....

Thankfully, my primary , at the time, had passion for his work and took an interest in my case,,,,,he did his own research and called me on a Saturday and told me..:You need to see Sampath.: Sampath is the Chief Neurosurgeon in Rhode Island....that is where we were living at this time.

SO..met with Dr. Sampath and his P.A. Mike..went over all the MRI;s and come to find out...I had a bad disk in my C Spine which needed to be fused...Sampath made the suggestion that he fix what he knew for certain needed to be corrected...wait 6 mths post op..then re- visit the Chiari symptoms. We did that..fusion went great..no problems at all.

However, I still suffered from the dreaded Chiari head aches, balance and pain issues, pulsating sound in both my ears that kept me up all night.....insomnia so bad that no matter what med I took....could not sleep, extremely rapid heart rate, numbness/tingling in all extremeties...scoliosis...

He then ordered a CINE MRI to see how the CSF was flowing...report stated that the flow was 'diminished'...so, I had decomompression surgery in late Aug.2008.

The MRi did also state that I have degenerative disk disease as well.

all in all, I feel as though I got the proper care , in the proper order.....

Are you taking any meds for the Fibro?? My husband was just Dx'd with Fibro and was put on Cymbalta with wonderful results.

please let us know if there is anything we can do to help you.

Take CAre,

Lori

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Prior to my diagnosis I was told I had fibromyalgia and chronic fatigue syndrome.

In my case I think fibro was definitely a misdiagnosis because my pain didn't really match the profile for fibro.

As for CFS I did match the protocol for diagnosing that but I think it was a result of the chiari because since my surgery my extreme fatigue and exercise intolerance has vastly improved. I am still a bit more tired than the average person but I'm able to work out daily and lead a full life now.

In addition to chiari I have chronic mono that flares-up, celiac disease, and a tentative diagnosis of ankylosing spondylitis.

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@Lori I take Gapapentin 300 mg 2xday; Tramadol 50 mg 2xday; Vitamin D 50,000 IUD 1 x week (dr Rx because of low Vitamin D levels); Folic Acid 400 mcg 1x day (over the counter, dr recommend since he found I was folic acid anemic); women daily vitamin 1 x day; Mononessa (birth control to keep me regulated, I had my tubes tied after my second child in 2007).

I have take Lyrica and Cymbelta at different times..they were GREAT it was that my insurance did cover has much as I liked...it was too expensive for me :(

I am allergic to Ibuprofen, sulfa drugs, and penecillen (so the dr have to get medical book out for me!)

The new symptoms that I had NOT had before was the tingling in the hands and feet and the numbness from head to lower back (that scared me ALOT) I was used to being tired all the time and the pins and needles feelings.

I am just wondering if I was putting too much of the blame on the FM??

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@Anglyn I kept telling my doctors that I thought mine was "nerve" related...it just seemed like I didn't have as much of the "muscle" problems except for a few muscle spasms like my other friends with FM....my friends with FM would always complain that could not stand to be touched....me it didn't bother me I loved to be {{hugged}}

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so glad it wasn't just "in my head" as they say :)

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My name is Jamie( username Lyanna)I was diagnosed with fibro after giving birth to my daughter in 2003. The pain was in my Back by my bra line and all the way up to my neck. I also have chronic fatigue, mild scoliosis,and osteoarthritis. After getting rear ended in 2007 I started having horrible pain in the back of my head then wrapped through the side to the front into a massive headache. They said I have a 3mm Chiari but that was not my problem. The Dr wanted to wait and see. I tried all diff types of meds, injections, nerve blocks but nothing helped. It just continued and I keep getting worse. My heart races or pounds really hard then I feel weak like I’m going to pass out. I get real shakes and just feel sick. It sounds like a helicopter is right by my ear or an ultrasound of a baby heartbeat. My heartbeat hurts my head. The back of my head burns, stings, throbs, and pulsates. It feels like someone hit me with a baseball bat and a really bad Indian burn. My fingers get tingly and I feel like mi going to collapse. Also behind my ears. Do any of you feel like that? I met an amazing Dr that has been treating FM patients with great success. Fibro innovations.com . My Chiari is preventing me from doing his program at the moment. Recently a NS told me my Chiari is 5 mm. I got fed up with the Doctors here in Tulsa. I have seen 15 +. Dr Kingston from fibro innovations recommended Dr Hefffez at the Wisconsin Chiari Center. I sent Dr Heffez my MRI and he had me make an appointment. I see him April 10. My hope is that I do not have fibromyalgia and its just the Chiari. I hope I can just have surgery and be better. Not sure if the is unrealistic or not. It is nice to find others out there that know what it’s like.

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Do you have fibro fog and poor memory. I do and It feels like I can never thing straight and have crazy anxiety.

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@ Lyanna...yes I have fibro fog and poor memory and balancing problems...I always had a fear of falling when I am out in public...I constantly bump into walls...I have not fallen to hurt myself (thank goodness...but always have that fear)...I was told by my lawyer to go to a counselor to have a dx for my condition (it would help with my SS disability case)...I see the counslor once a month mainly for talk thearpy. (I was dx with adjustment disorder with anxiety and depression due to chronic pain)...and wanted to say really??

I had asked the neuro dr the question about the being mis-dx for fibromygia...he said it's kinda hard to tell because sometimes they go hand-in-hand (great another "silent" illness that no one has heard about...I said to myself)... But he said on March 18, 2013 that my chiari has "progressed"...I have a 16mm...

I am just so happy I found this group and be able to discuss what I have learned on the way and have support when I go thru surgery (April 3, 2013) and the recovery stages.

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Just a note I am 44, married with two boys 6 and 13...and yes it bothers me that I can't "keep-up" any more :(

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I am 31 with a 9 year old daughter. I pray that surgery goes amazing for you. Who is doing your surgery?

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Dr. Anthony Capocelli in Little Rock, Arkansas

I live in Sherwood, Arkansas about a 45 min. drive from there (so it was a God sent for me)

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Incorrectly misdiagnosed with MS.

Correctly diagnosed and treated for Bi Lateral Geniculate Neuralgia & Multiple Headache types and Spina Bifida Occulta

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I love hearing your life stories!! Keep it brings me calm knowing I am not alone :)