MRI Update: Good Evening. I posted... - Hughes Syndrome A...

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MRI Update

crista1 profile image
26 Replies

Good Evening. I posted recently about my MRI brain scan in April. I received the report and disk of my scan today. Looking at the scan was a little strange to say the least and a tad scary. I asked for it so I could take it to London in August when I will attend at London Bridge hospital.

The report actually says, ' There is no evidence of recent infarction'. (Not sure if this means there is evidence of past infarction, but maybe reading to much into it).'Small, scattered white matter hyper intensities are seen, in keeping with mild small vessel disease'. 'Major visualized vascular flow voids are present', (think this is ok?) and 'findings of scattered fluid in the right mastoid air cells and small left maxillary antral dependent mucus retention cyst'??

Not going to look at the scan again and will be willing the 21st to arrive quickly so I can discuss with the Professor and know once and for all what is happening.

Spoke to my doctor today about the sparks that keep going off in my head. She will look at speaking to the hospital about my appointment with the neurologist which hasn't been set yet.

Hope everyone is well. Take care.

B x

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26 Replies
Lozzer profile image
Lozzer

Hi christa. I had a brain MRI just over a year ago and another last week and waiting to collect the results. Only comment that I can make on your results is that I have been told by a couple of specialists that the scattered white matter is generally of no particular concern. I am relieved about this as I too have the same. I think one of the reasons for my latest scan is to determine if there been any increase in these however.

crista1 profile image
crista1 in reply to Lozzer

Hi Lozzer. I'm hoping they will say the same to me. Glad

yours was ok. X

mel-21 profile image
mel-21 in reply to Lozzer

Hi lozzer

I read your post here which was posted three years ago. I've got the same answer from diffrent nerologysts too. My brain MRI showed several tiny none spesefic white spots on both of the frontal lobs that nerologysts thinks nothing about them. But this findings are stressing me to much. How it be normal or benign to have theses things in the brain. None of the nerologysts could tell me why and how I got them they just told me that they are benign and nothing to concern about. :(

Lure2 profile image
Lure2 in reply to mel-21

Hi,

I think you should put your question on our site today as you have answered on a 3 years old question. That way I think you could have some answers from our members.

I assume you have a diagnose of APS of course. We all have APS here. Do you have a Doctor specialized in autoimmun illnesses like APS?

Best wishes from Kerstin in Stockholm

mel-21 profile image
mel-21 in reply to Lure2

Hi Lure

Thank you for responding to my post. Honestly, I was hppping that the person who started this post would read and respond to me since her brain MRI result was so similar to mine. I really have no idea where I can go and post my question. If you can help me with it I'll appreciate you.

The MRI findings and the result that got keeps me worrying. :(

Lure2 profile image
Lure2 in reply to mel-21

I suppose you have been diagnosed with APS otherwise it is no use to put a question on this site.

If you have got APS I will try to explain:

1) you can see it under "update profile" (under mel-21) green label "Write a post"

2) On Home-page to the right under the photo of prof Hughes (also green label "Write a post") Click on the button.

As English is not my first language it is difficult to explain these things. Hope it works for you.

Kerstin

Or81 profile image
Or81 in reply to mel-21

Hello mel-21,

My case is similar to yours. I am wondering if could share how you reacted to warfarin. Did your symptoms improve? I have been just diagnosed with APS.

Lure2 profile image
Lure2

Hi again,

You have really done the best of the situation. You are speaking to see a Professor on August 21. Could that be one of those 3 Professors on London Bridge hospital ? In that case; spendid!

If you feel worse before that get yourself to a hospital. Take good care!

Best wishes from me in Stockholm

Kerstin

crista1 profile image
crista1 in reply to Lure2

Hi Kerstin. I will see Prof K at London Bridge. Im taking it easy. Thank you for replying. Take. C x

Lure2 profile image
Lure2 in reply to crista1

Hi again Crista1,

Good! Good luck!

Kerstin

Manofmendip profile image
Manofmendip

Hello Crista

Mr MRIs were similarly described to yours.

As my colleague, Kerstin has said, do take it to see the Prof at London Bridge, which one are you seeing?

Best wishes.

Dave

crista1 profile image
crista1 in reply to Manofmendip

Hi Dave. Seeing Prof K. Will take my scan with me. Hoping the rest of my medical records are here in time. Take care. X

Manofmendip profile image
Manofmendip in reply to crista1

Good luck Crista. I've seen Prof K & Prof H and two of the other Drs there too, Colin & Patrick.

Dave xx

crista1 profile image
crista1 in reply to Manofmendip

Thank you Dave. Not sure what will happen at London Bridge. I'm collating all my information and getting medical records together so im prepared when I go.Do you think it best to send the information before my appointment or take it with me on the day?

X

Manofmendip profile image
Manofmendip in reply to crista1

Hi Crista

I have done both on different occasions but I always have two copies of everything on the day, one for me and one to give to the Prof.

You may wish to request that any blood tests are done by your GP as they can be very expensive if done privately.

Dave x

crista1 profile image
crista1 in reply to Manofmendip

Thank you Dave. Not sure what will happen at London Bridge. I'm collating all my information and getting medical records together so im prepared when I go.Do you think it best to send the information before my appointment or take it with me on the day?

X

GinaD profile image
GinaD

Ditto. Ditto. My MRIs revealed a number of white " spider webby things" which the neurologist and diagnosing hematologist said were often seen in pre-treatment Hughes patients. ThecMRI done a year after starting anticoagulants showed " radical" improvement.

Sounds like you are on the right diagnostic track.

crista1 profile image
crista1 in reply to GinaD

Thank you Gina. Feeling a little better knowing I will be in good hands. It's the not knowing what's going on which is making it worse. Glad you got a diagnosis. Take care xxx

loretta1106 profile image
loretta1106

I had an MRI in March after a stroke and let the doctors interpret. I found it almost impossible to figure it out. Ask your neurologist or general md to explain it to you. Best.

crista1 profile image
crista1 in reply to loretta1106

Hi Loretta.It's impossible to interpret. I just scared myself silly looking at it so will leave to the experts!

Hope you are well. Thank you for replying xxx

loretta1106 profile image
loretta1106

I had an MRI in March after a stroke and let the doctors interpret. I found it almost impossible to figure it out. Ask your neurologist or general md to explain it to you. Best.

loretta1106 profile image
loretta1106

You're welcome. We will do that to ourselves. Sometimes I forget to ask questions and remember when I leave the doctor's office then I remember at the following visit. I have a neurologist's visit in November and I already have a few questions for him. It's a process.

You could perhaps upload the image of your scan? I had seen several Neurologists over the years. They will tell you if you ask. It would be interesting to hear about what Prof K would say. It would be useful to know for many of us. Who ordered this MRI if that's ok to ask? Rheumatology or Neurologist? Wish you all the best,

crista1 profile image
crista1

Hi Omega. A Rhuematologist asked for the scan to be done. I will post to say what Prof K thinks of the mri once ive seen him. Take care x

mel-21 profile image
mel-21

Hi Crista

I just read your post which was posted three years ago. I hope that you are still member of this forum and will read my reply to you. You mentioned that you would see an experet professor for your MRI scan. Will you please let us know what happened and what was his diagnoses. I too have the similar brain MRI that is a mystery to nerologysts. Therefore, the only answer that I get from them is "we don't know."

Lozzer profile image
Lozzer

Hi Crista,

I was content to accept the advice of the neurologist that I saw as they were also an expert on APS. My health has continued to improve since and I am have been free of any steroids or immunosupressant drugs for over sixth months. I feel noticeably better than three years ago and certainly haven't noticed any deterioration in mental processing since then.

My understanding is that white matter lesions are common. Its their location and extent in the brain that understandably are the most important considerations of their significance. That's the specialist field of the neurologist so trust their advice.

I can only strongly recommend that you keep yourself fit. Walking is wonderful exercise that can be done in any weather and does vastly improve a whole range of physical systems like our respiratory, circulation and muscular systems. Its also wonderful for stress release and helping with sleep. All the best.

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