Scared

[nichold]

This is my first time posting. My name is Nichol and I am 39 yrs. young. I have Lupus & RA. I have not been healthy my whole life. I had petti mal seizures as a child that I out grew. I had Graves (Thyroid) disease with a goiter at age 16 ending in a Thyroidectomy. I had a TIA when I was 28. I was diagnosed with Lupus about 4 years ago, after years of trying to figure out what was wrong with me.

Just before this past Christmas I just felt off. Didn’t feel horrible but didn’t feel great either. I had these weird headaches that started at the back of my head and would radiate upwards towards my eyes. The headache really wasn’t bad. In fact I could hardly tell I had a headache until I would move my head from side to side. Then I would feel the headache and sometimes see starts. I was really nauseated. I thought that I probably had a migraine without the bad headache part. I have had these in the past. After about a week of this weird headache I started feeling numbness in my left forehead and cheek. I thought it was just from nerve damage from the TIA. One day at work I had a really bad headache and when I walked I felt like I was pulling to the left. I asked a coworker if I was walking weird and she said no but I felt like a car that was pulling to the left.  I had a few days off from work for Christmas break and still didn’t feel well. Christmas day came and we were having our kids open their gifts. As hard as I tried I could not say “It’s your turn to open your gift” , I kept saying “It’s your turn to answer the phone” It was really frustrating and I started to scare my husband. I was really giddy because I was embarrassed but I was worried still. It bothered me enough and with the symptoms I had been experiencing before and my face still numb almost plastic feeling I made an appointment to see my FP. He was really worried that I could be having TIA’s again. So he ordered an MRI w/wo contrast.  Everything looked ok except for I have a 4mm herniation and was told I have Chiari Malformation. With my symptoms he was really concerned because I often have pleurisy and problems breathing. I have an appointment with a  Neurologist on Monday the 23rd. He has already ordered another MRI of my spine and some CFS test that I will do tomorrow. I am super nervous and have anxiety so badly that I feel like I am shutting down.

What questions do I need to ask this Dr. and what are they looking for. What are normal CFS pressure and how does that effect CM? Anyone else with Lupus and CM? Do I really have Lupus or has it been this CM all along? Any help would be greatly appreciated.

Nichol

[linnielou232]

I wanted to welcome you to our forum now you will know you are not alone in this.  We have all gone through the same issues you are having it is very flustrating.  Do get more than 1 oppion, and I alway's suggest to start a list of thing's you think of asking the Dr. so you will have it with you and you won't forget to ask.  Also having someone to go with you help's also.  Your health partner absorb's more than we do.  Wish you the best in this journey and alway's know you can come here and talk to use.  We are all Chiarian's.  some zipperheads. LOL....but understand what you are going through.  Best of luck

[selmaS]

  There r basic tests a NL or a Rheumatoid Dr should know to do....Your doctor will likely begin with a complete physical examination and a careful recording of your medical and family histories. Extremely loose joints, fragile or stretchy skin, and a family history of EDS is often enough to make a diagnosis of EDS.

Sometimes, additional tests are ordered to confirm an EDS diagnosis or to determine the type of EDS you have. They include:

Genetic tests. If your family's genetic mutation is already known, a DNA test can confirm vascular type EDS. Prenatal DNA testing and preimplantation genetic diagnosis, a method that tests embryos obtained by in vitro fertilization, may be available.

Skin biopsy. A diagnosis of vascular type EDS can be confirmed by checking for abnormalities in the collagen produced by your skin cells. In this test, a small sample of your skin is removed and examined under a microscope.

Echocardiogram. To check for the heart conditions that can occur with some types of EDS, your doctor may recommend an echocardiogram, which is an ultrasound of your heart. An echocardiogram provides real-time images of your heart in motion, and can help identify abnormalities in the heart muscle and valves.

DO check out the EDS group here on MedHelp and the videos for info by a Dr that also has EDS-http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

I hope this helps : )

  "selma"

[nichold]

Thank you for your support. Can someone tell me what tests you should ask for to see if you have EDS = Ehlers-Danlos Syndrome? As I am reading through this board it sure sounds alot like symptoms I also experience. I would like to up on what tests to ask for. Thanks  

[Lissamel84]

Definetly see more than one nuerologist.  My last one insisted that I never had chiari after seeing my MRI and after I had my surgery elsewhere.  Every other one I've seen has confirmed my original dx.  I can't stress enough, the importance of second opinions!  Selma is right, you likley had chiari from the symptoms you described above.  You have come to the right place for support, and reassurance that you are NOT alone!  

[selmaS]

  Sure...sorry LP= lumbar puncture...this is done to get the opening pressure to check for several diff conditions.

Here is a link to our list of abbreviations in case u have ne other issues....lol...
http://www.medhelp.org/health_pages/Neurological%20Disorders/Acronyms-and-computer-short-hand/show/509?cid=186
  "selma"

[nichold]

Thank you for the links and the additional information can you tell me what LP stands for. Thanks

[selmaS]

  Hi and welcome to the Chiari forum.

It is highly likely u may have been dealing with Chiari the whole time, I was told several times I had lupus and my last drop attack that is what they felt the issue was, so my surgeon that corrected my knee from the fall sent me for testing to check on lupus and my chiari was found,.....that is not to say u might not have both, it is possible and we did have a few members with both.

Make sure u see a few NS's and find the right one for u, u want a true chiari specialist.

We do have a list of questions in our Health Pages for the NS....http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186

We also have a list of the members drs, this list was compiled to help u research drs...not all may be true chiari specialists and y u need to research and not use the list as a referral,.
http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

   I believe opening CSF pressure is approx 30.....but make sure b4 they do an LP on u the tech knows u have chiari  and draws slowly....as this can affect the chiari if drawn to quickly!!
  
    "selma"