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Amanda Thorpe

MRI...not likely!

9 posts in this topic

Hello All

 

Well today I saw the Dr Reumatologist and Prof Rheumatologist, the appointment had been brought forward because of the palpitations I have began having, a new and interesting symptom.

 

Everything is plodding along as expected, just a slight increase in blood pressure medication and instructions to not stop taking the methotrexate. I stopped taking it for a few weeks, I was so tired and needed to be awake for my sister's wedding preparations, it can cause fatigue and I reasoned I had enough already.

 

Smooth sailing until we get to the issue of the left ventricular bundle branch block (BBB), basically the left and right side of the heart don't beat in sync as they're supposed hence the palpitations. The ECHO I had earlier in the year showed left ventricular diastolic dysfunction and the BBB both of which are a result of sclero. I recently had an ECG to evaluate the BBB and today I was advised that further testing is required. Fine by me until the word MRI came into the conversation in the form of MRI of the heart. I explained that due to being claustrophobic I had been unable to have a normal chest CT, initially trying to climb off the table whilst it was moving me further into the the mouth of the THING! The result was only half of my liver on the film, good enough for me but not for the doctors. Second time around I had to lie on my front going in feet first so I could not see the THING swallowing me up but had a very comforting view of the wide open space of the room and most importantly the door.

 

So after I explained this, feeling a little silly, a 24 hour halter test was decided upon and it can be done locally and hopefully will be sufficient. If not I'll be in a bit of a pickle because there's no way I could go through with the MRI unless it's one of the new machines that's open on all sides as the test can take a long time and I don't think you can be sedated. Well we shall see what happens!

 

I also asked about the fatigue hoping there was something to help ease it but the answer was much as I expected...no. Oh well!

 

So that's all folks and I'll let ya know about the halter test results. It's snowing here now and I am so glad I don't have to think about going to work tomorrow, or the day after, or the day after that...

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda

 

Sorry to hear about your new issues and I hope the 24 halter does it's job for you.

 

I had a brains scan done earlier in the year and I've never been claustrophobic but found being in the scanner quite scary! I used to pothole and that closed environment never bothered me but the scan was a different thing so I know know were you're coming from on this.

 

My consultant just shrugs his shoulders when I mention the fatigue and says there's nothing he can do so it's just a matter of coping with it.

 

We've had snow today which has covered the roads etc so it's not very pleasant outside at all. I wouldn't take the rubbish out to the bins, left that for hubby and I stayed in the warm.

 

Take Care

 

Buttons

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Hi Amanda,

 

Hope the Holter test is enough for the doctors to determine what they need to know so that you don't have to go through the trauma of the MRI. I had one because of palpitations but of course typically for the 24 hours I had the electrodes on had not one single palpitation!

 

Can sympathise re the Methotrexate - it makes me very tired for most of the week - am just recovering when its time for the next dose. I saw my rheumatologist last week and asked about stopping it - but he was waxing lyrical to the other doctors he was with about how much my skin had improved since I started on it (personally don't think it has done that much, but then I don't know what I would have been like without it), and suggested that we might even need to increase the dose as my fingers /hands were looking puffy again. I know I have free will, but am now resigned to spending half the week feeling sick and tired.

 

Lizzie

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Hello Buttons

 

Potholing?! I can't even watch it on TV without breaking into a sweat. Dr Rheumatologist mentioned that they are currently running a trial for a drug for fatigue but it won't conclude for about 3 years. I was not eligible as I would have probably plateaued by then being into my 3rd year now. Maybe there's hope on the horizon after all!

 

Hello Lizzie

 

I am also sick and tired of feeling sick and tired! You do wonder whether all the medication is doing something or if it's the disease itself changing. I have had great improvements with the skin on my upper arms and thighs now having patches of morphea whereas they were covered with tight skin at diagnosis. Did the mycophenolate I was on at the time achieve it or not? I know I have not had any skin progression which is great although other internal issue have worsened but even that fails to motivate when you've done nothing all week but feel sick and tired and you know the medication that's supposed to be helping is partly the reason why!

 

Take care


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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MRI? Mmmm, not so much, and in my experience MRI's cause palpitations. laugh.gif I'll keep the pens on my desk crossed (crossing your fingers is so passé) that the Holter does the trick.

 

Fatigue. Oh my, yes. Right now if I could send one symptom back, it would be fatigue. My idea of something really nice would be 2 weeks of naps every couple of hours, followed by the strenuous exercise of lifting a full tea cup whilst not losing my place in my book. If someone would periodically cruise by and spoon some chocolate ice cream into my mouth, it would be greatly appreciated.

 

Hope you're feeling really spiffy soon, Amanda!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Never had to have one yet Amanda...and by the sound of it, I hope I don't either, can't imagine I'de do any better :barf: , could our minds wander to a hot sunny beach if our eyes were closed perhaps, or perhaps not, humn? Sure hope the halter does the trick for you and, of course, that you feel better....


Sending good wishes your way!

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Hi Amanda

 

I hope the halter test gives the doctors all the information they need and you don't need the MRI. I'm not claustrophobic myself but the noise gets me.

 

We have snow here too now, lots of it falling throughout the day today .. I'm just hoping that we have lots n lots of rain tonight to wash it all away so I can drive to work safely tomorrow.. It can come back on Wednesday night if it likes so long as it is after 5.30pm, by then I'll be home from work and preparing for a lovely 6 day break.

 

Take care all

 

San

x

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no, scans are not so bad

 

just chill out and think of something and I almost fell alsleep .

 

christine

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