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You’re not alone if you don’t have a diagnosis yet but experience physical or mental symptoms that are very real and valid. In fact, there are many of us. If you experience symptoms related to a diagnosis but don’t quite check off all the boxes, think you have a condition but have it yet to be confirmed, are one of only a few people with a rare diagnosis, or are simply still solving your own medical mystery, this group is for you. Let’s encourage and support each other as we continue our search for answers.
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Community Voices

just saying hello

I joined this site a month or so ago, I think, but I haven't been very active (here or in general!)

I've been struggling since summer 2020 with unexplained symptoms, which naturally are pretty non-specific, and a lot of unhelpful tests.

I was diagnosed in Jan 2021 with a rare form of cancer (goblet cell adenocarcinoma of the appendix) and I was incredibly lucky to be treated by one of the top specialists in the country. I had surgery in March '21 to remove all the cancer (said to be fully successful) and receive a treatment called HIPEC which should have killed off any microscopic cancer growths. I then went through a relatively brief course of adjuvant systemic chemotherapy (thought to lower the likelihood of recurrence, which is high in this disease even with optimal treatment).

I have been declared "NED" (no evidence of disease) since then, through multiple imaging scans--CT of chest/abdomen/pelvis every 3 months!--and bloodwork (this is not conclusive; the only conclusive way to determine if I have a recurrence would be exploratory surgery, and it's Not Done).

The problem? I'm not better. The symptoms that sent me to the doctor in the summer of 2020 and got progressively worse are still here. Some of them are still getting worse. Some of them have invited friends.

The oncologists say it doesn't sound like cancer or lasting effects from treatment (which was brief in relation to many patients'). Most of the other doctors I see say it must be a lasting effect from cancer treatment, or that it's depression and anxiety. My psychiatrist says it's not depression or anxiety!

Living every day with the uncertainty and the pain of not knowing what is going on with my body and WHY and what will happen next is torture. I already struggle with feeling like I'm not in control of a lot of things (and honestly, many of us aren't) but this is just one more huge thing I have no control over. It has no name. No usual course, no treatment, no prognosis. I might wake up tomorrow and be back to how I used to be. I might wake up tomorrow and be paralyzed. I don't know.

I DO have some lasting effects from the cancer treatment--mostly issues resulting from the major abdominal surgery--but I feel like I could deal with those so much more easily if I didn't have all these other symptoms that I'm told are not related weighing me down and holding me back.

And whenever these doctors mention that it's anxiety, I wonder, what exactly do they mean by that? Should I NOT be anxious about the fact that my body is falling apart and no medical professional can explain why? Should I NOT be anxious and upset that my symptoms are being dismissed and written off, just as they were in 2020, and I ended up having cancer? To me it seems like anxiety and concern are pretty warranted and not pathological.

And, of course, I was told the same thing in 2020--maybe you're just anxious, or you're depressed, or the medications you're taking for anxiety and depression are causing these issues. It's the same song and dance now, and I feel like I'm back to square one after my journey through cancer hell.

It seems so unlikely that a rare cancer at a fairly advanced stage was discovered incidentally, but that may have been exactly what happened, in my case--either that or this IS all related to cancer, but no oncologist seems to know how or why, even the ones who specialize in it!

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Community Voices

When you know something is wrong, when you’ve taken medication for depression for decades but don’t have a diagnosis, how do you get one?

1 person is talking about this
Community Voices
Andy

Why do I always cry when I’m mad or angry but not when I’m sad?

It’s mostly when I have a discussion or an argument with my dad, because he never takes me seriously. I can have and argument with my mom and I won’t cry, but the moment my dad stars raising his voice or startind an argument I feel like crying because of the anger, but when I feel sad I mostly just look at a wall and that’s it. I hate showing vulnerability in front of my dad, it’s humiliating. I don’t know what’s my problem. #Undiagnosed

3 people are talking about this
Community Voices
Bri

Reminding myself how strong my body is

<p>Reminding myself how strong my body is</p>
Community Voices

No libido post-Roaccutane

Hello all

I did a course of Roaccutane for acne in 2019. I got the usual mild side effects while on it - dry eyes, scaly skin etc but nothing serious. It got rid of my acne.

A few months after the end of the course I started a new relationship. Soon after we got together, I lost interest in sex completely. My partner and I would have sex, but it would consist of me pleasuring her and then we would go to sleep. I couldn't get my body to respond at all.

The relationship went on for almost two years. I thought that what I was experiencing was just lack of attraction and so I ended up breaking up with her.

That was six months ago now and I still have no sexual feelings, except for the day or two immediately before my period. My naturopath has put me on Progestalift as I apparently have a hormone imbalance, but it's too soon to say if it's helping.

I am scared that the Roaccutane has permanently damaged my sexual functioning as there are a lot of people online saying they have experienced this, but it is not something that doctors think is possible (I asked my dermatologist and GP and they thought it was very unlikely).

I will keep taking the Progestalift and see if that helps, but in the meantime, wondered if anyone else has had a similar experience and would like to chat? Many thanks.

1 person is talking about this
Community Voices
Noah

May be finally getting some answers

After several years of worsening symptoms, and different doctors, I may finally be onto something. New doctor thinks I may have had a previously undiagnosed traumatic brain injury. I played football in high school and college, and after that boxed for several years, so it makes sense. I am now waiting for a neurology appointment. Hopefully I will finally get some answers. I'm hoping I can maybe start physical therapy as well. I've recently had to upgrade from a cane to forearm crutches for more support. They help alot. Hope everyone is doing well.

4 people are talking about this
Community Voices
ReBax

Autism?

Does anyone know how to go about an autism diagnosis in BC?

1 person is talking about this
Community Voices

Struggling with staying positive

I've been having increasing pain in my feet and legs since about October. In February it very suddenly increased and I made an appointment with a rheumatologist. I had that appointment a few weeks ago and left feeling good I was on the right track to figuring out what is going on. That doctor ran A LOT of tests. Yesterday I had my follow-up appointment. While a couple of things came back somewhat questionable at least one test can easily be connected to my hashimotos. The 2nd test was my urine had some blood in it, which isn't new, I've actually had that problem for over 10 years and multiple doctors have brushed it off. This doctor said no this is a problem, telling me to tell my primary care and go see a urologist. After that he said based off of him exam last month and the tests results he couldn't find an answer. But he did say I need to see a neurologist and gave me the name for one. I was somewhat skeptical and expressed that to him but reassured me that is the best course for now. I told him my pain is increasing and I'm having more bad days than good days. Then asked him if he could recommend any over the counter pain management because Advil and Tylenol are not helping. He said he didn't want me to take anything long term for the moment, like gabapentin, because he doesn't want my pain being masked for when I see the neurologist then recommend Aleve. I'm not confident it will help. When the appointment was done it looked up the neurologist and felt somewhat better when I saw he's also a neuromuscular doctor because my pain feels more muscular than nerve like pain. Unfortunately he has no appointments for the next 90 days and I have to wait for the office to contact me to make my appointment.
The rheumatologist did say at the end of the appointment he wanted me to keep in touch and let him know what happens with the neurologist because I have a unique case. That's never happened before. It's usually I can't help you, don't let the door slam on your way out. Not sure if he's genuinely concerned or he is thinking more scientific and wanting scientific answers. It certainly wouldn't be the first times doctors have treated me like a science experiment.

7 people are talking about this
Community Voices
R

Hey, everyone! I have POTS but I also experience myoclonus and dystonia-like movements. They are much worse in the evening. The two neurologists I have seen have both suggested FND but the treatment is not working and I don’t have mental health problems. All of my symptoms improved with POTS treatment but relapsed after having COVID. Has anyone here experienced anything similar? Sorry for the length.

12 people are talking about this
Community Voices
ReBax

Shin splints?

For the past few months, I’ve been getting debilitating pain in my shins. This lasts for several days and makes it near impossible to walk. I’m thinking it might be related to hypermobility?

3 people are talking about this