What should I do?

Faith,

Hi! Well, the MRI may be useful. Worth following up with her as to when that MRI will be: keep the pressure on to keep moving forwards, I think.

I assume the rheumatology referral is to do with your possible PSA (psoriatic arthritis). We have another community in the Ben’s Friends family re PSA support. If you want to get similar support re PSA as we are trying to offer here for AVMs, go to

If the MRI doesn’t happen or goes quiet, chase the neuro about it. If she doesn’t discuss the AVM with you, mention it yourself. You probably need to be a bit pushy to make sure she understands your concerns and is acting on them. Not discussing the AVM with her could (only could) leave you waiting for her to action something she thinks of as minor or non-urgent. To me, you don’t sound minor, so I would want to make sure the conversation progresses and you actively move it forwards if she at any point doesn’t seem to be doing so.

Wait on the MRI appointment but don’t wait too long. If you find yourself waiting more than you’re comfortable with, go pester and make sure you have a full conversation about your AVM, the symptoms, the swelling on the back of your head, the urgency that she perceives and what the steps are that you/she are following regarding it. You may need to be a strong advocate for yourself. Hopefully, she will move the MRI along promptly and then send you for an angiogram but I think you’ll probably need both.

The MRI is a bit less invasive than the angiogram, so it is kinda normal to start with the MRI.

Ok?

Hope this helps! Very best wishes,

Richard

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Thanks for the PsA. I have the MRI on Friday. Hopefully this moves along quick. Thanks a bunch!

Friday is pretty quick, so that sounds good. Try to keep the subject moving along :wink:

Let us know how you get on.

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So I had boodwork today. They took 9 vials! I have a Spine MRI. Which I dont understand what my spine has to do with my avm.

I think this is all to do with the PSA rather than your AVM.

I found the following info about PSA. Blood tests and checking out your spine are part of diagnosis:

When you have appointments with doctors, ask them directly what the next step is for… why you’re going for that test, so you understand better and we can all tell whether you’re being looked after ok. If not, we can nudge you to ask some of the right questions but if you don’t understand what’s happening, it’s more difficult to help you. Take someone with you if it is all rather much to take in. Two sets of ears and mouth is better than one if you’re finding it overwhelming.

Let us know how you get on tomorrow :+1:

Very best wishes,

Richard

So i have some of my bloodwork back. I have a live well app that I can see what the results are. I had the cervical spine done on Friday. I wonder how long that will take to get results back. So far all I know is angiotensin converting enzyme is at 62. C reactive protein in 1.1. And sedimentation rate westergren is 41. Does anyine know what this even means? Lol.

And i was wondering why the neurosurgeon put headache on the reason for visit instead of AVM?

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Faith,

I’ve no idea what these things mean. Often it is better only to discuss them with your doctor as looking stuff up means that you can worry about all sorts of things that are scary but very rare because Google will show you the rare things as well as the more common things.

From the bit of googling I’ve just done, the ACE reading at 62 looks high. This may be related to high blood pressure, though what is causing it is where the doc might look. I think the CRP is in range, so nothing that I can see there. I think the SRW is high, so indicating inflammatory response for some reason. Again, for the doc to decide why that might be the case.

… now. Note. I.am.not.a.doctor and I just googled this stuff so I don’t know any more than you do what any of it means or whether I’ve understood the articles I’ve read correctly, so you need to see the doc about them rather than ask here, really.

Ok?

Very best wishes,

Richard

Thanks. :upside_down_face:

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Hello Faith,

Seenie here from ModSupport. I’m not an AVM survivor, but I AM a PsA survivor. PsA peeps are ALL survivors: our disease normally moves very slowly, as do the treatments. Nothing fast, nothing drastic, but if they think you might have PsA, they are smart to be sending you to a rheumatologist asap. That’s where you need to be. But your AVM treatment will take priority over anything they do about your PsA.

I agree with DickD: the MRI of your spine is probably because your Neuro is efficient, and while you were there anyway, s/he decided to do one for the rheumatologist. Be impressed!

The blood work might mean something, or it might mean nothing at all. PsA is a quirky disease: over 50% of us with PsA have blood work that looks completely normal, even when our disease is “flaring”. Unlike rheumatoid arthritis, there is no blood test for PsA. It’s all done by looking at your history, your skin, and checking your joints for swelling. So the fact that you had body pain all over, and normal blood work, is not unusual at all in PsA. It’s also the reason I went for 15 years of being undiagnosed. Your docs are more on the ball than mine were, obviously!

So don’t worry about your PsA, but be glad that someone’s going to check you out for it. Things to remember:

  • If you have PsA, it may take a bit of time, but you will be OK, and you are probably going to feel better on that front.
  • Be impressed with your doctors: they are working as efficiently as they can to get you sorted out and feeling better.
  • What DickD said: if you don’t hear from your Neuro’s office in a week or 10 days, touch base with them to check.
  • Join our PsA group, livingwithpsoriaticarthritis.org , and tell them Seenie sent you. :blush: We’re a nice, talkative group like this one is.

We’re glad that you found us (even if these are clubs that nobody wants to be a member of!).

Seenie

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so when they do my mri’s they are 1.5 cm slices with and without contrast. i definately wouldnt be ok with a zoom appointment. i had to do a zoom appointment with my neuroligist and i hated it. i got to see my neurosergeon in person. i feel like with appointments as specialized as ours they should only be in person

I hated the zoom appt also. She can’t tell anything from a video appt.

So i went to the rheumatologist today. And he said he will monitor the psoriatic arthritis to see if thats what it is. He prescribed prednisone 20mg. He also said i have fibromialgia. Im so confused. Idk weather to believe him or not. The appt was only maybe 10 mins. He said my right foot looks really swollen. Said that the spinal mri didn’t show anything. My headaches are getting worse. And the right side of my body is sooo weak. What would yall recommend doing? The neurosurgeon said i have inflamition in my body. But she doesn’t ever mention the AVM. She doesn’t say let’s monitor it. She doesn’t ask about it. The swelling behind my head used to be behind my ears. It feels like it moved at least an inch down.

Rheumatologists have very tricky diseases to diagnose, so at the moment, he’s saying PsA and Fibro. But he’s also given you prednisone, which may make you feel better (and may “deflate” your foot), and if it does, it gives him more information for his diagnosis. The spinal MRI didn’t show anything? Great news! If you do have PsA, you do not want it in your spine. What to do? Take the prednisone and go to the Rheumatologist for a follow up.

When do you see your Neuro next?

Seenie

August 18th. I have only 7 days of the prednisone then the day after I have to take bllod tests to see if the inflamation in my body went down or went away. The mri was of cervical spine. Thanks for answering. :grin:

oops I thought u meant rheumatologist. The neuro didn’t even give me a date. Didnt ask for a follow up. Thats mainly the reason I’m confused.

Faith,

Can I suggest you ask the neuro (or their secretary) outright about the AVM and what the next steps are? That’s the only way you’ll get to know that you’re being looked after ok.

Keep us in the loop.

Ben’s Friends also have a fibromyalgia support group with a very friendly guy called Davey looking after folk over there. The link is

Lots of love,

Richard

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Faith,
All in the '80s, in my 20s, I had migraines headaches all the time. I, also, got gran mal seizures, & year by year the seizures got worst & worst, & they, also, got more & more FREQUENT. I knew, eventually, my AVM was going to win, somehow, so at 29 years old, I WENT FOR IT. I visit @ 7 neurosurgeons around our country that supposably were the best w/dealing w/AVMs. Dr. Rober Spetzler in Phoenix, AR warned me of the risks of my very LARGE AVM, but I WAS READY to get my AVM fixed! It was a bold move, but I knew I really did NOT have a choice. Altogether I suffered 2 strokes during7 brain surgereis! I took me @5 years to really understand that this is really a 2nd Life! I had to start over at almost everything, but I was DETERMINED & my many, many PRAYERS helped me thru it all! I am SO BLESS w/this 2nd Life!

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Hi @faithc! Sorry for the trouble you’re enduring! One thing I’ve learned is from a movie I love, Batman: the Dark Knight. Bruce Wayne is discussing with Alfred his butler and friend how to cope with all the tragedy and misfortune that surrounds Bruce and his circumstances. In the film, Alfred says effectively, “one thing I’d have you do Bruce, endure.” Sometimes that’s all we can do but often that’s all that’s needed. Endurance! I know it’s hard, I know often in our case it’s impossible, but by my belief "With man this is impossible, but with God all things are possible (Matt. 19:26, NIV). Lifting you up as you endure. Blessings as you continue!

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