I've been having even more memory and cognitive issues these past several months an ever before. So I finally saw my family doctor last month. Like many of you, I resist doctor visits. They have generally been unproductive and frustrating.
This time seems to be different. In a not so good way, I think. Who else will understand but my Sjogren's friends? And maybe you can provide me with some information in advance of my follow up appointment later this week.
My MRI noted a 5 mm well-circumscribed juxtacortical T2 hyperintensity in the right middle frontal gyrus. I have another MRI scheduled in 3 months that will be with higher resolution.
I assume this may be caused by inflammation.
I guess I just need to share this with folks who will understand. And because I already have significant cognitive impairment, maybe you can help me with questions I should ask. I already have a neurologist appointment in May and hopefully the second MRI will be completed before then.
Thanks everyone. It's been a long time since I've posted. It will be good to hear from you.
I know nothing about things that can show up on brain MRI's but I am sure glad that you went to the doctor. We get so hung up on our autoimmune issues that it gets to the point that we think every little thing we have is an autoimmune issue. We do need to go to the doctor at times just to get things checked out. So hard for us to sort things out and it is hard for our doctors also. Seems like so many of our issues don't always make sense.
I will be glad when you can have the repeat MRI and see if there is something that makes sense with your symptoms. Know that I will keep you in mind and in my prayers. Stay strong as we never know what the future brings and we can worry ourselves silly at times. Hugs meirish
Care bear, I am so sorry you have this issue. Do you have any idea what this means? I know the stress from new findings can be so very hard. I have no idea what it means but hope one of the nurses can help you. Sending a hug your way.
Anna
I don't know what these findings mean, but am very sorry you have had this extra stress. (As if we don't have enough to contend with ....)
Sending you my very best wishes.
Dear Carebear:
I'm also unfamiliar with brain issues, except as a patient who has white matter issues in my MRI, back in 2010. I imagine they are still there or worse. But you have more than that, or other than that, I think.
This is the description of my MRI results in 2010: MRI:
There is mild periventricular white matter gliosis with scattered foci of increased signal through the periventricular white matter of the frontal lobes as well as within the subcortical white matter of the right frontal lobe, the largest measuring 4 mm in diameter.
I've had several MRI's of my brain since 2010, all at Duke, and no one is at all concerned about me. I was told the white matter gliosis was normal for age 67.
This is what I found on a search using pubmed and the terms: 5 mm well-circumscribed juxtacortical T2 hyperintensity in the right middle frontal gyrus.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5614934/
Hang in there, and try to think of other things.
Love, Elaine
I am so sorry to hear this. It's particular difficult when provider says let's just watch and wait. I had lesions show up years ago when was having neurological symptoms such as migraines. My neurologist was checking to see if I had MS. He said he sort of wished I did because he could have treated it. I do not appear to have it and have a current order for a new MRI because I was having myclonus (night seizures) and my one hand jumps around at night. I've put off going because I'm having other issues that are more bothersome.
the watching and waiting are so difficult, I'm there right now. I hope they can come to come conclusions that will prove helpful.
Thanks everyone. Well, my Family Physician called me on Friday as scheduled. What a waste of time.
First, she didn't know why she was calling me. Then it was evident she had never even read the MRI report prior to the call (she received it five days earlier). My doctor went on to minimize the reported results, making it sound like a follow-up MRI was unnecessary (the radiologist recommended this). She thought I had already seen the neurologist (my appointment is in May), and she didn't bother to review her notes from my original appointment (which a good doctor would have done).
Yes, I need a new doctor. I am looking.
I reminded her of my stroke-like experiences and confusion and my declining fine motor skills. Duh. So now she's ordering the follow-up MRI and sending a note to the neurologist.
I just need to wait patiently, and write some concise notes for my neurologist appointment. And of course, look for a competent Family Physician.
So sorry that you are dealing with this inept doctor. I had that happen this past fall and the stress really got to me. Hope that you can find a new doc ASAP so that you have more control of your appointments and what is going on. Good luck. Thinking of you a lot. meirish
I remember you, Carebear. I tend to be here rather sporadically too and it's nice to see familiar names.
I'm so sorry you are dealing with this, but glad you are checking it out and being your own advocate with the doctor. I've just recently started having cognitive issues but haven't been brave enough to mention to my doctor. I hope you will come back and share your results.
Good luck and take care of yourself! We are thinking of you.
One thing that is very evident these days is that because of the covid and other issues (including the loss of much medical staff including doctors) it takes so long to get in for scans and scopes, etc. Short of staff and backed up in every department.
One can always hope that we get in for the MRI's, etc as soon as possible. Hang in there Carebear. Lots of people thinking of you. meirish
These are called Juxtacortical small lesions (JCSL). Currently, their cause is unknown.
They may be associated with various neurological symptoms.
The lesions might result from arteriole atherosclerosis, which should raise our attention (a small form of stroke).
If you're a doctor, you could read :
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5614934/pdf/fneur-08-00497.pdf
You should be closely followed up.
I remember vrystaat from years ago. Some of us have been on this forum over 15 years. Vrystaat hope you are comfortable as I see you have some heavy issues going on. Thank you for answering this post for care bear and I will keep you in my thoughts. meirish
Thanks all! I had my second MRI last week, and my doctor called me the same day. I don't altogether trust what she said because she contradicts the first report. Honestly I don't think her heart is in it anymore, but the gist of it was that the lesions haven't gotten worse in the last three months. I haven't been able to read the report myself yet. But I have a neurologist appointment next week anyway. He will review it with me more thoroughly.
I feel pretty confident that this is all Sjogren's related if nothing has changed in my brain.
Unfortunately this has taken a toll on my mental health. I have been feeling anxiety lately, and depression too if I'm honest. I hope this will improve once I have answers.
Thank for your encouragement and prayers. You will never know how much it means to me.
Glad that you are seeing neuro next week. It really doesn't pay to see some of these docs does it. Many of them can't keep up and don't understand autoimmune enough to even care if they keep up.
If you are feeling that anxious and maybe depressed please mention it to your neuro. You deserve to feel better. It is very stressful trying to deal with all these issues and then have to deal with docs who can't keep abreast of any of it. It might be that a fairly short session of antidepressants will get your brain chemicals back on track and you will feel more like yourself.. Good luck. meirish
To put our cognitive issues in perspective, let me talk a little about myself.
I had a very taxing job as a Physician Assistant to a Doctor. But I loved my work and we had very few complicated cases.
When I was in my early fifties, I began to notice small lapses in my cognition. I sort of ignored this and carried on with my job.
I was then hinted at by one of the RN's that I seemed to be making small mistakes. For example, I was getting confused.
So I went to an excellent university clinic and was seen by a superb lady Rheumatologist. She found early signs of Inclusion Body Myositis.
This is closely related to Sjögren's Syndrome. There is no treatment.
But forgotten in the rush were my increasing cognitive symptoms. By now I was increasingly debilitated and my work quality was in doubt.
Wisely, I retired from my job. By now, I was quite stupid. I do not have Alzheimer"s but I have to be very careful in all my daily activities. Doing my monthly accounts takes me hours.
What I take as the main points are:
1) Very late diagnosis of my Myositis and my Sjögren's Fog.
2) Both are untreatable , and amazingly many Rheumatologists haven't heard of them.
I had a similar experience in 2010. I had stroke like symptoms. I had a full neuro workup in the hospital. They discovered a meningioma. I was referred to UCSF. Doctor said it was basically an incidental finding.
Fast forward to 2017 and I had some major cognitive issues. I requested a neuro psych exam, if, for nothing else, than a baseline. Something was definitely off.
The next year, I discovered what I had previously believed to be a new mole was actually a tick embedded in my abdomen. Instinctively, I knew that was the cause of the cognitive issues. I requested Lyme testing. It was positive.
Three weeks of antibiotics and they sent me on my way. When I complained of continuing symptoms, they said it could be from Lupus or Sjogren's and treatment was basically the same, which I find laughable.
I wish you well and hope this is an "incidental finding" for you, too.
I had my neurologist appointment yesterday. I don't really know how to explain it. If swearing were tolerated on this forum, I would be using some choice words.
The appointment was conversational, so I felt quite comfortable right away. This was the only positive.
He was against "fancy tests" like MRIs or neuropsych testing because "then what?" he kept saying. I brought up small fiber neuropathy and he was VERY against doing the biopsies because they were "criminal and cruel" and "then what? Nothing can be done." So he was saying that SFN cannot be treated.
A common statement of his was (four times he said this) "The only way we will know what is wrong with you is by doing an autopsy after you are dead." He also said "When you go to a funeral everyone says look how nice he looks. But he is still dead." Humm...
He just couldn't think of anything to do for my cognitive issues, only recommending an Alzheimer's disease medication (making it clear I did not have Alzheimer's - duh!). He also said I could try ADHD meds but that would affect my sleep. He appeared to know nothing about Sjogren's and did not ask any questions. Why would he, when he knows it all already?
He hadn't looked at my second MRI. Just another fancy test, I guess. And he was going to write a letter to my doctor saying I was "sort of okay".
I think he was leaning toward ADHD before I even met him. Just a feeling. Not ADHD I assured him.
To summarize: Nothing wrong with first MRI, he believed me about my symptoms but cannot prove it (wouldn't neuropsych testing do that?) and not recommending any tests because what's the point because we can't treat anything.
I will tell my family doctor everything and let her decide what to do now. I'm still speechless. What the heck. No wonder I avoid doctors.