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Sticky Blood-Hughes Syndrome Support
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Clear MRI/mra odd symptoms

So it's been a rough two weeks, we lost a baby at 9 weeks and then had a d&c a couple days later. Somewhere in there I began getting headaches and feeling dizzy. Had one really bad day, dizzy nauseous, and some double vision. Went home to sleep it off, fell going to the bathroom of course! Felt better the next few days then woke up feeling awful and had to go get my blood tested anyways. Super dizzy all morning, got car sick on the way to the hospital and my thrombo lady sent me right down to emerge. They did blood and Ct, all normal, sent me to stroke ward, MRI came back normal, neuro testing was normal but I never realized how affected I'd been. I have the flat face on my right side, weak right arm and problems with my foot (totally why I can't walk in flip flops anymore!). Still small headache and dizziness. Had mra this morning come back clear so they sent me home. Still can't walk straight, tip over often, just not great. Told me to double dose my b12 and take potassium. I'm on warfarin, aim for 3.

Now I'm not sure where to go. Going to book a closer appointment with my neurologist, see my chiro, see my gp. I also have to get my ptsd in control. I've been taking a lot of Ativan to get through attacks lately.

Does anyone have rls too? Been driving me nuts!

11 Replies
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Really sorry to hear about your baby.

Have you got an APS specialist? Really important, as sounds like your blood is too thick? TIAs, migraine, headaches, are all symptoms of our too thick, sticky blood. It may just be the trauma your body has been through and will settle down but an APS specialist would guide you through this.

Are you still on warfarin and is your INR still at 3? Or was you switched to heparin because of the pregnancy? This could all relate too.

I see you have mentioned your high heart rate and blood pressure - how is this? All the stress and worry you have been through won't be helping.

Getting earlier appointments is a really good idea, you need medical help to get all this back in control, especially while you are grieving.

Really hope you feel better soon and sending you a big hug xx

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Hi,

I am so sorry for the loss of your baby.

I agree with everything that HollyHesky says and I would like to hear your answers to her also.

I suggest you buy a bloodpressure-machine to monitor your bloodpressure at home. I think you do need that. Also try to selftest to keep a stable INR.

I know you wrote 5 months ago that you had a higher range than 3.0. You said your therapeutic range was 3.0 - 4.0. I have had about the same symptoms as you and I feel best at an INR around 4.0.

You do need a Specialist who is very skilled at autoimmun illnesses and knows how to get your bloodpressure down the best way besides be in range with the INR of course.

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I am so very sorry to read about your miscarriage. This must be devastating, physically and emotionally for you and your spouse. Added to which are your horrendous physical problems.

You need plenty of rest and care. You also need a great deal of support, which I hope you are getting physically and emotionally.

With good wishes,

Ros

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I do have an APS specialist, I'm back on warfarin, was on heparin for pregnancy as well as asparine 81. I do have high diastolic only pressure, we were discussing meds for it before I got pregnant but it came back to normal while I was pregnant again. I do have a home bp monitor (well at work) and check often. I don't self test yet because of the cost ($600 machine and $8 test strips) but will buy it after we have a second child. I go in weekly to the hospital for my inr fingernprick and here and there for blood draws.

I've been having a tough time dealing with the a third loss even though it was much earlier than the other ones. I'm having panic attacks like crazy. A lot of my PTSD triggers are related to the hospital so it was very stressful.

I also didn't realize how much damage my stroke had left me with, weakness, speech and facial drooping :(.

Going to see my chiropractor and family doctor to see where we can go from here to get this sorted out.

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I suggest you see your Specialist of autoimmun illnesses and not your Chiropractor and family doctor. You need help.

Do you get the same INR on your fingerpricktest as on your vein-draw at the hospital? You are perhaps not Lupus Anticoagulant and get different readings like many of us here do?

I suggest you try to get your INR steady as soon as possible so you will be able to carry a new baby through 9 months.

This illness is about too thick blood that as to be thinned!

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I wish we could make the pain of your loss disappear, I am so very sorry for you and your little family.

Please make sure to keep yourself hydrated and well nourished. With all you’ve been through you may be anemic also. Do they have you taking iron supplements?

PTSD is awful. Is there a therapist you can speak with? It may be beneficial for you and your husband to go together and speak with someone. I’m sending hugs. I hope the light at the end of the tunnel becomes brighter very soon.

Cindy

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Thank you, it's been a rough few years. My iron levels were great, the only thing they found off was b12 but it was was like 24 instead of 25 so super minimal. I used to have therapy for my anxiety and PTSD but stopped when my son was born because everything was great. I'm looking into seeing if I can see someone local now

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Where are you located?

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Hamilton, Ontario, Canada

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I hope for you “Both” to speak soon with someone, all the best, Cindy

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i, too, am so sorry for your loss and for what you have been going through. I had similar neurological symptoms about a year ago that had a very sudden onset with no apparent trigger. It was initially thought to be a TIA after the MRI came back clear. But, because my symptoms did not immediately improve: difficulty with walking, speech, slack muscles in my face, weakness in my arm, etc., I was sent to a vestibular specialist who diagnosed me with a form of vertigo that can be caused by a very low Vit D level. Having your Vit D super low disrupts so many things in your body. He said it caused a “cascade” effect on my systems. He said my limbic system had been impacted and that was causing a lot of my neurological symptoms. Sure enough, my levels of Vit D were in the single digits. It took about a month of taking prescription level supplements to get most of my symptoms to resolve. I even had to go to physical therapy to help with walking and to get strength back in my right arm.Not sure if they have evaluated your Vit D levels yet, but it is something you may want to get checked out.

As a follow-up, I took over the counter supplements for about 6 months after 3 months of being on the prescription level supplement. I started to have symptoms again recently and sure enough, my levels had dropped back down to the low twenties. I am back on the prescription supplements and may need to be on them long term.

Praying you get relief soon!

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