Playing the waiting game
September 19, 2015 9:21 PM   Subscribe

I am in the process of being diagnosed with a disease, possibly a very rare disease that will possibly require surgery yet cannot be cured. This is scaring the holy crap out of my and the doctors are giving minimal information about what, exactly, is going on. I'm looking for advice on whether to contact my GP to try and get clarification and also ways to calm down.

A while ago, I asked this question.

In the meantime, I am very, very close to getting a diagnosis. But nobody will tell me what that diagnosis is or how to proceed.

What I know is that the latest test showed a textbook case for a rare probably-autoimmune disorder that's trying it's darndest to take away my ability to swallow. There is treatment for this, and those treatments are quite effective. A speech pathologist MENTIONED that it looks like this disease (which is called Achalasia for the inquiring minds among us) and another doctor mentioned a motility disorder. But GI hasn't said ANYTHING. They just referred me to a freaking surgeon's office and didn't say why. I know that it is a disease that requires treatment by a thoracic surgeon, and he is a thoracic surgeon. I know that this surgeon specifically treats this disease. There are series of tests required to have surgery for this disease, and I have had all of them. The last time I saw GI, they ordered the final two tests to confirm the diagnosis. But they never SAID that. They never discussed what was going on. They sent the information to the surgeon without explaining ANYTHING to me. The information I have I got from other specialists who have access to my case but can't actually speak to the specific treatment, since its out of their scope of practice. I've also been researching Achalasia a lot. Probably too much.

The results of these tests are definitely in. I have my appointment with GI the 29th. But I'm losing my mind. The guy administering the test mentioned that at first glance they looked normal, which make zero sense and would basically put me at square one, and I'm confused and overwhelmed and it's really frustrating knowing that SOMEBODY knows what's going on, and it's NOT ME. I know that I can get the results in nine days. But that feels like an absolute lifetime, and I find it really mind-boggling that none of the relevant specialists here will tell me what's going on. I've literally never heard of being referred to a surgeon without explanation. It makes no sense.

So I want to message my GP, ask for clarification and tell her I'm not thrilled with how communicating has been going. I want to know what's going on. I'm going up a wall. If anyone should know what these doctors are thinking, it should be me. I understand that they don't want to speculate but that doesn't mean leaving me entirely in the dark. Is this a good idea? I feel like it is, on the one hand, but on the other, the appointment is in just slightly over a week, so objectively speaking it's not THAT long. I'm afraid they'll give a vague answer and suggest I start on anxiety meds or something. I'm always afraid of sounding needy. But I'm crawling out of my skin here, and GP really is nice. I think she'd give me a good answer.

In the meantime, how do I cope? Normally I'd aggressively exercise and feel better, but I broke my foot right as all this was peaking. So, I'm incapacitated and horribly, terribly restless as it is. I've tried breathing exercises. I get out as much as I reasonably can. But I can't distract myself. I tried knitting, and I may try making some jewelry, both of which I know how to do. I want to get my hands on a REALLY GOOD book. But I just.... I keep going back to it. I don't know how to stop.

Getting diagnosed is the absolute worst part. What can I do?
posted by Amy93 to Health & Fitness (9 answers total) 2 users marked this as a favorite
 
Yeah that whole not knowing thing can really fuck you up. Your gp is your quarterback. She is the one you go to first and she should have copies of every test and test result. Call her and from now on make sure you see your doctors face to face when they get test results so you can ask "why?" and "what does this mean?"

Fuckin autoimmune disorders. I hate em. Don't turn down anti anxiety meds, they really can help and a lot of ai disorders are exacerbated by stress.

I would watch some addictive tv like The Americans or House of Cards. If you have any animals, let them comfort you --that's kind of their job.

If you do have an ai disorder, memail me and I'll give you some book recs. But right now isn't the time for those. Right now is the time for some sweet tea, if you can, a bath, a cuddle, a cry, and a xanax or at least a tylenol.
posted by janey47 at 10:24 PM on September 19, 2015 [1 favorite]


I think it would be totally okay for you to call your GP and say that the radio silence is exacerbating your condition by putting you under undue levels of stress. Sending you lots of good thoughts. The waiting game is the worst and I don't blame you for being anxious.
posted by Hermione Granger at 10:26 PM on September 19, 2015 [5 favorites]


I totally agree with Hermione Granger. Call and say that. Your GP is probably super busy and just not really thinking about how much not knowing is stressing you out but it's totally understandable that you are. I've said similiar to my GP and it really helped. Don't be afraid of sounding needy. It's not like you're calling her up to nag about how many days til Christmas. You're in a vulnerable place right.

In the meantime, how about binge watching TV? I'd go for something lighthearted like Parks & Rec or Cougar Town. Try to measure them out so that it's a task to focus on that you must do and if you divide them up by the time you're done with X seasons it's appointment time.
posted by kitten magic at 11:34 PM on September 19, 2015 [1 favorite]


Sorry to hear about your condition. I would most definitely call the GP and the specialist, every day until you get answers to all of your questions. It's inexcusable that they don't sit down with you and provide you with more information. There are a variety of reasons Drs aren't better at communicating with their patients, one being that they are busy, busy, busy (no excuse, but a fact) and possibly the patients don't ask because they are shy, afraid, confused, don't care etc. Use your voice and use it loudly!!
posted by waving at 2:44 AM on September 20, 2015 [3 favorites]


Your speech pathologist, the other doctor, and the technician who administered your test should not have played armchair diagnostician with you. It's irresponsible and (in my opinion) unethical. If someone isn't qualified to confirm a diagnosis of a serious illness and support you through that process, they should not suggest to you that you might have it. Full stop. I think it's important that you acknowledge that having these people casually suggest that you have achalasia or that your test results were unusual was not "helpful because they gave me information" but "hurtful because they gave me unreliable information without considering how it would affect me emotionally."

Hand in hand with that goes my response to this: The last time I saw GI, they ordered the final two tests to confirm the diagnosis. But they never SAID that.

Respectfully, while the tests your GI ordered may be the ones that would be ordered to confirm a diagnosis of achalasia, your GI has never mentioned achalasia and is probably still running a differential on multiple potential causes of your pain and discomfort. As you well know, achalasia is a rare disease, and I would argue that no compassionate doctor should tell you that you might have a rare disease until they've ruled out other, more common diagnoses.

I think your doctor should have outlined their thinking and explained some of the possibilities to you. However, I do not believe that your GI is engaged in a long conspiracy where they know you have achalasia and keep you dangling for weeks. When a doctor doesn't tell you your diagnosis, it is more often than not because they don't know what your diagnosis is yet.

Finally, having read your previous post and also having suffered through a serious illness myself, I will tell you the following: virtually any diagnosis is better than no diagnosis. Being diagnosed -- even if it is with achalasia -- means that you will be able to get treatment that has been well studied in other similar patients and that your likelihood of recovering is drastically higher than if you were not diagnosed. I know there is fear that is unavoidable, but diagnosis means hope, too. Don't lose sight of that.
posted by telegraph at 5:51 AM on September 20, 2015 [5 favorites]


i would think about changing your gp (or at least giving them a good talking to and explaining that you want to understand more). you want someone who talks to you.

also, try to look at this as a win. you're actually doing really well - you're finally getting towards a diagnosis, which means that things are going to get better. doctors are useless when they don't know what's wrong. but once they have a target, once they can put a name to it, a whole pile of possibilities will open up. it may not feel like it, but your life is actually about to get better... (i was in a very similar position a few years back).

getting diagnosed is not the "worst part". the worst part was when you didn't have a clue. you're already past the worst. (although, in your position, i remember crying a lot and writing wills. but hey, in retrospect, it wasn't as bad as i thought!)
posted by andrewcooke at 6:29 AM on September 20, 2015


Response by poster: Well, I should clarify. I didn't SEE gi. I saw his PA. I don't think it's a conspiracy either. I think they're unsure, and I think they don't want to speculate because they think it could actually do more harm than good.

But what I also know is that the barium swallow didn't just maybe suggest achalasia as a possibility. It showed a textbook case of it. I think they're really close to sure but, again, they don't want to say until they are sure. And, also, I think they want to wait until I can see the doctor himself. Which will happen. But I don't want to wait that long.

Thanks for the replies. I think I'll send my GP a message so I can hopefully hear from her tomorrow.
posted by Amy93 at 7:37 AM on September 20, 2015


Response by poster: Another thing to know is that the speech pathologist is the one who administers the test, so it's literally part of her job to give me a preliminary idea of what it showed.

Anywho, sorry, I'll be quiet now.
posted by Amy93 at 8:31 AM on September 20, 2015


I have been in your situation (having had tests, some idea that the results were not good, but not sure of what they meant). I actually scheduled an appointment with my GP and went in and went WARGH WHAT DOES THIS MEAN at her. It ended up being a really good idea, as she was able to explain some of the basics, explain what she couldn't explain (the stuff I was being referred to the specialist for), and generally tell me that OK, this is why you're sick, and a diagnosis is a good thing because we can help you now.

So if your GP doesn't really return calls, you may have better luck scheduling a time to talk with her in person, esp. if you don't want to wait for the 29th. I know I would have a hard time waiting.

Good luck!
posted by pie ninja at 3:23 PM on September 20, 2015 [1 favorite]


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