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Rare diagnoses?

Dec 06, 2017 1:12 PM

Hi all, I'm brand new to this forum, and from when I read so far it seems like a really positive community. 😊
I'm wondering if anyone else has a rare condition, if it's isolating not knowing anyone who can relate, and if it took forever to get diagnosed.

For the record, I have Mast Cell Activation Disorder, Interstitial Cystitis, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome.
I also have fibromyalgia, osteopenia, endometriosis, and spinal issues though those are more common. Chronic pain for sure from all that.

If you have heard of any of the rare ones, reach out, maybe we can help each other.
Thank you.

Dec 06, 2017 2:54 PM

I have some rare conditions which are an Inoperable brain tumour in the Hippocampus and Amygdala, and Tethered Spinal Cord. I also have other spinal issues and an undiagnosed chronic pain condition.

Dec 06, 2017 2:56 PM

I'm sorry to hear that you have all that to deal with. I have a friend with Chiari, is that similar to what you suffer from?

Dec 06, 2017 10:41 PM

Are you asking if my brain tumour or Tethered spinal cord is similar to chiari?

Dec 06, 2017 11:49 PM

Tethered spinal cord.

Dec 07, 2017 3:20 AM

I have essential thrombocytosis which is a blood leukemia. Basically I have about 6 times the normal amout of platelets that a normal person has and to top it off they don't work. The treatment is chemo no fun. Most of the time I choose not to treat it. If I eat clean, juice and find ways to not stress it stays about 3 times the normal. The scarey part it that I am at a high risk for a stroke either a bleed or clot so I am rolling the dice. It also causes pain in my bones like when the dentist hits a nerve. Sometimes it feels like my long bones (femur) is vibrating. I also have RA, osteopenia, most of my spine is fused from my c-spine to L2 with a stainless steel rod screws, clamps and hooks CRPS, fibromyalgia, depression, anxiety, adhd and major insomnia. That is the short list. I have had 2 rotator cuff repair's on my right shoulder. I can say I understand and emphasize being in pain.

Dec 07, 2017 8:53 AM

AZElle: Chiari and tethered spinal cord aren't similar. Chiari occurs when the back part of the brain slips into the space where the skull and neck vertebrae meet, and that part of the brain becomes trapped although it can be corrected surgically. Tethered Spinal Cord happens during the 8th week of gestation when the spine is closing. For an unknown reason, the end of the spinal cord becomes trapped by extra tissue. It can usually be successfully corrected with surgery. My doctors never did the surgery and I'm currently looking for a Neurosurgeon in my province who can correct the Tethered Spinal Cord and the Herniated Discs that I have.

Dec 07, 2017 9:09 AM

Which Province are you in?

Dec 07, 2017 12:32 PM

I'm currently on the referral list for Sunnybrook Health Sciences Centre in Toronto.

Dec 07, 2017 1:38 PM

I was just thinking that Toronto had to have some of the best. I hope everything goes well for you.

Dec 07, 2017 4:19 PM

Thank you for educating me. I'm praying you find the right treatment and doctors.

Dec 07, 2017 4:50 PM

I am new to this forum also. I have a rare blood disorder and it is hereditary and there was a 50% chance when I had a child if it was a boy he would have it. He has got it and it’s severe. I am a carrier if haemophilia A and as a result passed it on to my son. He has haemophilia A. He bleeds internally into his joints and muscles. He has no clotting factor to stop his body bleeding. He has to have factor 8 replacement injections every 3 days to try and stop himself having an internal bleed. It doesn’t always work and he then has to go into hospital for treatment every 12 hours until the bleed has stopped. I have a baseline of 30% clotting factor(factor 8) in my body. I recently had my 2nd open spinal surgery and needed factor 8 replacement every 12 hours for 7 days to stop the bleeding. I also suffer with sacroilitis and arthritis of the lumbar spine. The haemophilia was only diagnosed when I had my son 14 years ago as I was adopted so I have no family history to speak of. That made the diagnosis difficult because I had no answers for myself or my son. We are under a fantastic Heamophilia team and they really do everything they can to look after us the best they can and make sure we have everything we need to live life.

Dec 07, 2017 8:44 PM

Thank you Ackybreaky and AZElle.

Dec 08, 2017 5:44 AM

I have Interstitial Cystitis. A lot of people assume only old women have it, and they just stop drinking coffee and smoking and they’re fine. While this may be true for some it’s not true for all.

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