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Apparently I'll have plenty talk about at my upcoming appointment with the neurologist. I've had one MRI that was consistent with CP but also indicated MS. It wasn't the news I wanted or even expected, but the puzzle pieces fit. I've been trying to be conscious of symptoms that also fit the diagnosis without spiraling into anxiety and hypochondria.
So I consulted google-- such a double edged sword. I read about the different types of MS and symptoms. I read about the MS hug which I haven't experienced exactly. I think I have a version of it in my neck. It gets strangely tight and I feel like I need to roll my neck and shoulders, but nothing really relieves it.
Then I realized my vision had been weird for the last year at least. Eye doctor said it could be the Pulfrich phenomenon--- MS.
Now for the last few days I've been feeling a sensation of an electrical shock going through my body. It's not especially painful-- it feels similar to touching a low voltage hot wire fence. I consulted the old frenemy google and the third result labeled it Dysesthesia. Ta-dah another MS symptom.
It's been hard for me because of my CP I just ignore almost everything unless it cannot be ignored. It's just been normal to have a quirky body. So to be more conscious of what is going on is pretty new for me. I don't want to show up with nothing to say at my appointment beside "idk something about an MRI and my doctor sent me to you."
I'm no doctor, but I am a researcher I even have a degree stored behind my dresser to prove it. I'm not using google in lieu of medical expertise, but I have questions and I don't have a doctor on speed dial. #MultipleSclerosis #CerebralPalsy #DoctorsAppointments #Google #Undiagnosed

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Gotta catch ‘em all

The last few weeks have been particularly hard on me.

Mentally, I’m mostly okay. Physically, I’m not. And that’s caused me to question a lot of things, wonder how it got to this point, increasing the severity of incidents where I won’t take painkillers.

I’m being referred to cardiology for a tilt table test.

In April, I was told I had low blood pressure but they didn’t seem too worried. At the end of May after worsening lightheadedness, I was told the same, and I was basically just told just to eat more and take iron supplements. And then last week, I went back again.

I initially made the appointment for something else a month before (I had to wait for a month), but then the lightheadedness got worse, so I told them about it again. I told them I had taken iron supplements, I was eating healthier than ever, I was staying hydrated, I was staying active, I was just really doing all the right things. And again it was low.

They’ve diagnosed me with postural hypotension in the meantime and told me to try compression socks for a week, and then if that didn’t work to call them and they’d refer me. So here we are. I get to have a blood test in September while I wait to be seen.

My sinus issues had a major flare up. I was so miserable with it that I sent a email basically begging them to give me an appointment (I was referred back in February but waiting list is apparently a year) because it was beginning to affect my mental health, and I get to see them in October.

It’s affected my hearing, so I had to chase up my ENT appointment. I hope it is just the sinus issues causing it, and not a third relapse of my ear problem, especially as everything seemed perfect last time I saw them. It would be nice to celebrate the first winter in 11 years without an ear infection.

And then of course, my referral for heartburn/ acid reflux. I see the doctors for a one-month review, which will end in the referral they wanted to do (because I had suffered for at least 5 years w/out diagnostics) but held off on. The medication they put me on has somewhat helped, but I’m still having to take gaviscon most days.

Finally, the chronic pain. It’s been difficult these past two days, and after (stupidly) lifting a sofa up because the cat pushed her toy under it (and then she herself went under it so I had to call my sister because I physically couldn’t lift it for much longer), it’s been worse. I still forget that I’m not really supposed to do things like that, and I always pay the price (pun not intended, but yeah cause volatarol is expensive).

I’m just really very tired. I remind myself it could be worse, which is probably what has helped me stay positive and mentally mostly okay, but sometimes it gets to me. Particularly when it’s yet another tablet added to my daily medication. It makes me tired, and I think “it only gets worse as I get older”. I want to stop them, but I know I can’t. I ended up in hospital the last two times I did.

Or another time it bothers me is when everything is getting worse/ is bad/ is happening all at the same time. This post doesn’t even cover all of it, but at this point I’m too tired to write anymore. Speaking of tired, I’ve only had 5 hours sleep each day for the last 3 days. I wake up early and then typically can’t get back to sleep because of pain and insomnia :))

#ChronicPain #Depression #GastroesophagealRefluxDisease #Heartburn #AcidReflux #BloodPressure #Lowbloodpressure #PosturalHypotension #Hospital #DoctorsAppointments #Doctors #Sinus #HearingLoss #ent #cardiology #Hearing #Medication #MentalHealth #Pain #BackPain #Insomnia #Painsomnia