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kspiel
@kspiel

Posts: 6
Joined: Mar 27, 2017

Undiagnosed, debilitating health condition

Posted by @kspiel, Mar 27, 2017

I’m writing this on behalf of my partner. She is a 25 year old who has been debilitatingly sick since she was thirteen. She was hospitalized with extreme abdominal pain which was initially misdiagnosed as appendicitis. Her entire teen years were spent in hospital without any diagnosis. Her condition was dire enough that school was out of the question. As an adult she has been unable to work due to many widespread symptoms, most notably near constant excruciating abdominal pain and nausea. Other symptoms include myoclonic seizures, low platelets, chronic anemia, hypothyroidism, muscle weakness, tremors in all limbs and jaw, and extreme pain in all limbs. This is not a full list of symptoms. Any advice or similar stories would be very welcome. In general, her experience of the medical system has been very hostile and accusatory. She has been treated as a chronic complainer, attention seeker, or otherwise been told that she has to accept this low quality of life. I do not accept that.

REPLY

Hello @kspiel,

Welcome to Connect; I applaud you for the support, and validation that you are offering your partner!

I would like to introduce you to a few members and mentors who have been strong advocates for themselves and their health.
Please meet @kdubois, @johnbishop, @predictable, @dawn_giacabazi, @sandytoes14, and I’m confident that they will be able to give you more insight into finding some answers.

You may also wish to view these discussions on Connect:
1) Male, 23, Possible Autoimmune Issues, Difficult to Diagnose: http://mayocl.in/2oryrQC. (If you scroll through this conversation, @johnbishop has shared a link to an eye opening TED talk “What happens when you have a disease doctors can’t diagnose”)

2) Undiagnosed auto immune disease: http://mayocl.in/2oa6aia

While they may not share symptoms, I’d like to tag @dash99999, @lighthouseceliac, @elizabethbryant, @thoferer81017, @lisabeans, @mschock, @andrietta as they too, have pursued care for symptoms that remained undiagnosed.

Hello @kspiel, I also would like to welcome you to Connect and thank you for not accepting the non-help your partner is getting. Hopefully others with similar stories will jump into the conversation. Here is a story a Mayo patient has shared who was also frustrated with the answers she was getting. It may give you some insight into how to help your partner:

Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan
http://mayocl.in/2naDzbD

Keep asking questions and pushing for an answer that helps,

John

I’m very grateful to both of you for chiming in and offering your support and resources. It’s a great comfort. We live in Canada, where it seems clinics devoted to autoimmune disease are few and far between. While we aren’t certain that autoimmune disease is in fact what my partner is dealing with, it seems very likely considering her increasingly wide range of symptoms and lack of diagnosis or answers of any kind. It is an absolute dream of ours to be able to undergo diagnostic care at Mayo, but the financial reality will keep that just a dream. I wonder if anyone in this discussion group has experience with autoimmune disorders and diagnostics in Canada. I would be very grateful for any information or resources about navigating the medical system here. It is a frustratingly slow system and very difficult to find new doctors once a doctor has lost interested in you.

Hi @kspiel,

I would sincerely encourage you to go to this Mayo Clinic page, http://mayocl.in/2nbCzUT, which has a lot of information for Canadian patients, including how Mayo Clinic would work with your insurance plan.

@angelard @jamorris9 @overwhelmed @jennsprung @mattiemae @knightkris @mlemieux @sallycanuck @jmbjar @fransky @martishka, do you have any suggestions for @kspiel?

@kanaazpereira

Hi @kspiel,

I would sincerely encourage you to go to this Mayo Clinic page, http://mayocl.in/2nbCzUT, which has a lot of information for Canadian patients, including how Mayo Clinic would work with your insurance plan.

@angelard @jamorris9 @overwhelmed @jennsprung @mattiemae @knightkris @mlemieux @sallycanuck @jmbjar @fransky @martishka, do you have any suggestions for @kspiel?

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I don’t have personal experience with autoimmune diagnostics, but I do know a number of fellow Canadians that have. Can you narrow down to province for me, perhaps via DM? Happy to help in any way that I can!

Hi @kspiel, I don’t have a lot of experience with autoimmune diseases (with the exception of a year-long battle with drug-induced lupus), but I do have a lot of experience with having to advocate for myself, and I had been treated in the same manner as your partner for years before I took myself to Mayo Clinic for evaluation. As someone who has been through it in the past, thank you for sticking by her side and maintaining the attitude that she should not have to simply accept what has happened to her. In my volunteer work for Mayo and also in the various medical-related forums I have been in on Facebook, I have seen many, many people who don’t have the support of family and loved ones. Your continual care for her is essential and I can ensure you that it’s not taken for granted.

My advice to both of you to help figure this out… keep track and journal everything: symptoms, results of appointments, etc. Perform online research from reliable, valid resources to educate yourselves. Ensure she has a good primary care physician that she trusts and believes in her issues — sometimes, this is the biggest obstacle. (I went through four PCPs before I found the guy I have now, and he’s the best PCP I have ever had. It’s okay to fire doctors who aren’t doing their jobs.) When going to doctor appointments, be sure to go with her, and take a notebook and a pen to write down notes. And very importantly, be sure to take care of yourself.

I am living proof that with perseverance, changes can happen. I had been growing increasingly more ill for 12 years, and now I’m on the road to recovery. It can happen. As I frequently say, no one should have to settle with their health.

Thanks so much for your thoughtful response. I certainly agree that finding the right PCP can be a major hurdle. From what I have seen since being involved with my partners health care, the responses and care have ranged from total apathy to total antipathy. We have a physician now who is willing to make referrals, but is otherwise not particularly adventurous or enthusiastic about research into her condition. I am currently exploring options around provincial health coverage here in Canada extending to out of country clinics in order to get closer to a visit to Mayo. Alternatively, a clinic at Mt. Sinai hospital in Toronto deals specifically with arthritis and other autoimmune diseases. Unfortunately, while our socialized medicine here in Canada is in many cases a wonderful asset, it does make wait times for clinics such as that very, very long.

I am very heartened to hear about your recovery. That is wonderful for you, and wonderful for me to hear.

@kspiel

Thanks so much for your thoughtful response. I certainly agree that finding the right PCP can be a major hurdle. From what I have seen since being involved with my partners health care, the responses and care have ranged from total apathy to total antipathy. We have a physician now who is willing to make referrals, but is otherwise not particularly adventurous or enthusiastic about research into her condition. I am currently exploring options around provincial health coverage here in Canada extending to out of country clinics in order to get closer to a visit to Mayo. Alternatively, a clinic at Mt. Sinai hospital in Toronto deals specifically with arthritis and other autoimmune diseases. Unfortunately, while our socialized medicine here in Canada is in many cases a wonderful asset, it does make wait times for clinics such as that very, very long.

I am very heartened to hear about your recovery. That is wonderful for you, and wonderful for me to hear.

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Regarding PCPs… in my local medical community (I live in Western NY), I’ve been having better luck over the past few years with younger doctors (late 30s / early 40s) when it comes to taking the steps to keep looking for answers. As a fellow-patient with many, many medical conditions, I told my PCP that I truly need a “general contractor” and that he needs to have a vested interest in seeing me succeed. Luckily, he agrees, and I truly feel that he cares about me. He’s actually told me that, as a doctor, he has learned vast amounts from me regarding what it means when a patient advocates for themself as much as I did/do. There are good doctors out there!

As an aside, my father-on-law was recently told in February that his knee replacement surgery would be scheduled for late July. I told him to go back and tell them that he couldn’t wait that long, that he’s already waited a very long time, and that he wanted to get on the waiting list in the event that there was a cancellation by another patient. He did, and his surgery was last Friday. Maybe this strategy will work for your partner/you.

And, perhaps you can schedule at Mt. Sinai in Toronto while continuing efforts to get into Mayo. Doing that won’t hurt anything.

Again, never lose hope.

Welcome to the boards. This is a great place to hear similar situations, ask questions or just vent. So sorry for your partner. Like it has been said, journal all symptoms and ask a million questions. I too have not been diagnosed. I have been suffering for over 2 years with extreme joint and muscle pain. My rheumatologist is treating me for RA/Lupus but has not diagnosed me. He also cant relate some of my symptoms to my illness. I am proceeding with a new rheumatologist in May. I would suggest that you keep calling for a second, third, fourth opinion. You are a great resource to your partner and by being proactive I believe you will get some answers.

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