How to cope with urge to get more reassurance/tests

[Allochka]

Hi everyone,
I have posted about my terrible HA about my daughter. I'm afraid she has tuberous sclerosis, because my husband was recently diagnosed with angiomyolipoma in kidney (and kidney cancer earlier on). Angiomyolipomas are benign tumors associated with tuberous sclerosis, but much, much more frequently they are observed in healthy patients. In TS they are usually multiple, but when they are sporadic - they are single, like in my husband.
I was so obsessed with TS in daughter that I even booked her for an MRI ( a 9 month old kid!)
But she fell ill last week, we even were in a hospital. So MRI is cancelled for now, in order not to put her under more pressure.
All docs in hospital I talked to about TS laughed at me.
I consulted a neuro online whether I have reasons to be concerned. She said no. It was not enough. I wrote to best TS specialist in a big neighbouring country to ask if she would suspect TS in my husband and daughter. She also siad no.
So, reassurance from best TS specialist should have been enough, right?
But somehow I can't put it out of my mind. I still crave for an MRI, because it seems to me that only this test will give me definitive answers. I keep thinking that even the best doctors can be wrong. I'm ready to put my little girl under anesthesia just for my own reassurance. This is terrible...
I'm forcing myself not to call and book MRI right now. I'm rereading answer from TS specialist all the time, telling myself there is nothing to worry about.
If anyone had been in similar situation - how did you cope with this urge? Just by willpower? Or using some techniques? Or impossible without meds?
Part of me wants this MRI to put it behind me. Part - uderstands that more reassurance will just keep HA going...
Hate HA... :-(

[pulisa]

If an eminent TS specialist has said that there is no need for her to have the scan then I think you have to question your motives for having it done. Is this to satisfy your HA compulsions or would going against expert medical advice benefit your daughter? Is your fear greater than the consultant's advice and knowledge? Would an MRI be enough? There is still room for doubt and it's living with doubt that is unbearable, isn't it?

Can you bear not to have that MRI done? And if you have it done will you be satisfied with the report and conclusions? I don't think the question of sedation is a big factor here but its your motives and where will it all stop?

I appreciate how unbearable this is for you and deeply feel for you x

[Allochka]

You are right, Pulisa, it is living in doubt that is killing me. I was fine for a couple of days after TS specialist's reply, but then anxiety took over again.
Right now I'm thinking about trying to live without MRI and having therapy. Will see if it helps. But this uncertainty is awful...

[Allochka]

HA is a terrible thing... Couple of hours ago I was ready to try to avoid MRI.
Now I decided to book it for a peace of mind. However, when peace of mind was a lasting thing in HA sufferer? I guess if it comes back fine in terms of TS, maybe there would be smth else showing up, and I'd be freaking about that.
I wish I could let these thoughts go at least for a day...

[MyNameIsTerry]

I think when it comes to this, use your husband as the decision-maker. Your anxiety, and all the negative thinking styles that brings, will be pushing you for the tests. You know those tests will do nothing for your anxiety as you've already said the best doctors in the world couldn't reassure you.

So, with this being about a third party in your child, I think your husband, who is less burdened by the negative thinking, should be taking charge. This won't help you anxiety probably, but it will prevent unnecessary testing on your child - which I bet you know you really don't want to do because to be so worried you must be a good mum! So, as that good mum your rational side will know what not to do, the rest is the anxiety causing you a lot of discomfort.

What does your husband think?

In terms of the urge, it's the same as the rest of us with obsessive-compulsive cycles in our anxiety. Whilst I don't have HA issues, I do a quite varied OCD. My compulsions were many. No matter what anyone told me, it wouldn't stop that urge and it was overwhelming.

Work on undercutting it by reducing your overall anxiety levels. Whether that's relaxation, exercise, techniques, etc. It will help because I bet you have noticed how in times of stress your issues intensify? Many of us OCDers recognise this and I suspect it to be the same for the people who post more on the HA board.

[Allochka]

Thank you for this thoughtful response!
My husband is convinced there is nothing wrong with him (it all started with TS markers in him), and, respectively, in our daughter. But my anxiety doesn't allow me to believe him.
Last days were very stressful indeed even without TS worries. All familky is sick, daughter even was in hospital together with me. I guess I should try to live atbleadt couple of more calm weeks after everybody recovers, and then see how I feel about the whole thing.

[MyNameIsTerry]

Yes, I think you have to try to accept that your husband would never take a single chance with his daughter as well. You know this, it's just your anxiety twisting the knife and pushing you into acting on the obsession.

You've had a rough time with all the ill health and that is bound to take it's toll on you. Whilst these were real illness issues, with negative thinking they can be added to that "told you so" in the subconscious and make you want to push even more for tests & reassurance. That's only natural in anyone, we are shaped by our experiences, but in you it takes it to a different level and only adds to the irrational thinking.

Applying a watch period is a good idea. It's an exposure technique, so expect anxiety & obsessive thinking, but this will reduce hopefully the longer you are able to not give into it. I know that's much harder than it sounds though.

I think your husband will be very important in keeping you going here. You will be prone to reactive thinking right now and also in protective mode which is very natural.

Perhaps try the Thought Record approach. Using that format you write down the thought with all the evidence from your mind and the outside world for it. Then counter evidence it, which you have plenty for, and perhaps add in about how it is not in your daughters best interests to put her through unnecessary tests. Then you write a new positive/neutral outcome statement. Keep using this to challenge the thoughts.

Counter the "what ifs" too with "positive what ifs".

For instance:

"What if my daughter is ill?"

Positive.
"What if she is fine?"
"What if there is no connection between X & Y?"
"What if she will recover from her current illness and her health returns to normal?"

Etc. Those are not good examples, I don't have enough knowledge of the condition to formulate a good statement.

[Allochka]

Thank you, I'll try this technique. I guess I know what you are talking about. I already do smth similar - I create lists with reasons why my daughter doesn't have TS, and reread them from time to time.
Waiting period will be hard, but I have to try.
Thank you for support!

[MyNameIsTerry]

If you want the CBT tools ones, just look at the Thought Records on here:

http://psychology.tools/download-the...orksheets.html

In case it's also helpful, and some people on here use CCI workbooks, towards the bottom Health Anxiety is a title and through there you should be able to get at workbooks.

Yeah, quite a bit of these tools & techniques are similar to things we use in daily life. I think they just give us some structure & direction.

[Allochka]

Thank you! Will have a look!