Not diagnosed yet, but what do you all think?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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jenbird
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Not diagnosed yet, but what do you all think?

Post by jenbird » Wed Apr 14, 2021 9:01 am

Hi, I am a 45 year old female who has been experiencing an odd variety of symptoms for a few years. I am the kind of person who tries not to complain or be a hypochondriac, so when something feels wrong with me, I think, "It will either go away or it will get worse." I've sort of suspected I have MS for a little while, but when I have asked my doctor about the strange things I have experienced he seems to downplay everything. He is a small town doctor, and I believe he is a good doctor, but he is so used to dealing with problems that are common, like obesity and hypertension, and if you don't present in that way, he figures you're healthy.

A few weeks ago I went to the ER on a Monday morning. This is only the second time I have been to the ER in my life. I had been waking up with headaches for several weeks, but this morning I woke up feeling really bad and my heartrate was at 100 and I had not even got out of bed yet. When my husband suggested the ER, I accepted. I was worried about my heart because problems with the heart are in my family. My dad having multiple heart attacks, and my sister was also found dead at a fairly young age (52) and her cause of death is unknown.

Anyway, long story short(er) my heart checked out okay. Did EKG, did monitor, etc. Because I happened to mention the headaches the ER doc sent me for a head CT. The radiologist that read the CT said that i had two 7 mm calcifications in my choroid plexus, but something else could not be ruled out and he recommended an MRI. So the MRI was done while I was still at the ER. With and without contrast. This was read by a different radiologist. After saying there was no mass, here is what that radiologist said:
"There are multiple small nonspecific foci of increased signal on T2 and FLAIR pulse sequences in the cerebral white matter without enhancement. Diffusion diagnosis includes microischemic demyelination, sequela of atypical migraine headaches, multiple sclerosis (no evidence of active plaque), sequela of prior infection or trauma, or vasculitis."

I have read some of the posts on this forum and I do intend to ask about the B12 thing. I have a neurology appointment on April 26, but does anyone have any thoughts on this? And what does "diffusion diagnosis" mean? All input appreciated!! Thanks in advance.

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NHE
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Re: Not diagnosed yet, but what do you all think?

Post by NHE » Wed Apr 14, 2021 3:04 pm

Hi Jenbird,
Welcome to ThisIsMS. While I can't say whether or not if you might have MS, I did want to mention the following.
jenbird wrote:
Wed Apr 14, 2021 9:01 am
"There are multiple small nonspecific foci of increased signal on T2 and FLAIR pulse sequences in the cerebral white matter without enhancement. Diffusion diagnosis includes microischemic demyelination, sequela of atypical migraine headaches, multiple sclerosis (no evidence of active plaque), sequela of prior infection or trauma, or vasculitis."

I have read some of the posts on this forum and I do intend to ask about the B12 thing. I have a neurology appointment on April 26, but does anyone have any thoughts on this? And what does "diffusion diagnosis" mean? All input appreciated!! Thanks in advance.
Diffusion diagnosis may refer to the type of imaging used in the MRI, diffusion weighted imaging.

https://radiopaedia.org/articles/diffus ... -2?lang=us

By the way, did you get a copy of your MRI on disk? This is always a good idea as hospitals only keep the records for a limited time. For example, I had an MRI in 2014. My prior MRI was from 2002. It was no longer available and all I had was a printout of the radiologist's report. This led my neurologist in 2014 to not even view the images. He was negligent in this regard.

In addition to the headaches, what other symptoms do you have?

Lastly, the McDonald Criteria are used to diagnose MS. These are heavily dependent on MRI and require dissemination of lesions and symptoms in both time and space.

https://multiplesclerosisnewstoday.com/ ... reloaded=1

https://www.nationalmssociety.org/Sympt ... gnosing-MS

https://multiplesclerosis.net/diagnosis ... d-criteria

jenbird
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Re: Not diagnosed yet, but what do you all think?

Post by jenbird » Wed Apr 14, 2021 3:41 pm

Thanks for the reply. Yes, I have a disk of the CT and MRI. A very nice nurse suggested I get one before I even left the hospital that day. I've saved it to my computer as well. The PA I have the appointment with is a partner of the hospital so he should have access without the disk anyway.

As far as symptom, I've had some various one off incidents. The first I remember was over 6 years ago. I was sitting on the couch not doing anything strange and I had a weird sensation like I was falling, like when you drop on a roller coaster. It lasted about 1 second. I thought it was weird but I didn't know how to describe it and it happened only once. Another time I got off the toilet, walked a couple steps and my legs buckled. I recovered after about a minute, but felt icky for a while. I actually mentioned this to my doctor. He chalked it up to a circulation/blood pressure thing with my legs after sitting. Could be, but I hadn't been sitting there long, just enough to pee. But what was I gonna say at that point? It hasn't happened again. About 2018 I was at a restaurant just eating a meal and my right leg suddenly felt like I was being electrocuted. It really hurt for a few minutes and then tingled and was painful the rest of the day. It was difficult to walk and put weight on it. I've also had vision issues. Just brief episodes where I feel like my eyes don't focus together. A couple times I had what I can only describe as a gray curtain drop down and interfere with my vision briefly. Since January my symptoms have increased. It started with waking in the night dizzy. I have a lot of sinus problems so I thought it was that. My face hurts on one side by my sinus, but it's a terrible pain and pain relievers don't help much. The pain subsided and the dizziness let up after a week or so, but I still feel lightheaded all the time, and my ears have started ringing constantly. I have a few other things that I've thought of since the MRI and the possibilities that there is actually something wrong with me.

Thoughts?

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NHE
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Re: Not diagnosed yet, but what do you all think?

Post by NHE » Wed Apr 14, 2021 10:26 pm

Hi Jenbird,
jenbird wrote:
Wed Apr 14, 2021 3:41 pm
As far as symptom, I've had some various one off incidents. The first I remember was over 6 years ago. I was sitting on the couch not doing anything strange and I had a weird sensation like I was falling, like when you drop on a roller coaster. It lasted about 1 second. I thought it was weird but I didn't know how to describe it and it happened only once.
I used to get sensations where it felt like the floor was going up and down like when you're in an elevator and it comes to a stop.
jenbird wrote:
Wed Apr 14, 2021 3:41 pm
I've also had vision issues. Just brief episodes where I feel like my eyes don't focus together. A couple times I had what I can only describe as a gray curtain drop down and interfere with my vision briefly.
That sort of sounds like optic neuritis (ON). However, when I had ON, it was in one eye only and stuck around for a week or so. It was like wearing glasses where only one lens had fogged over. Afterwards, colors didn't appear is bright as they did through the unaffected eye.
jenbird wrote:
Wed Apr 14, 2021 3:41 pm
I have a lot of sinus problems so I thought it was that. My face hurts on one side by my sinus, but it's a terrible pain and pain relievers don't help much. The pain subsided and the dizziness let up after a week or so, but I still feel lightheaded all the time, and my ears have started ringing constantly.
For your sinus issues I recommend trying a NeilMed sinus rinse. You can find them on Amazon or at a local store like Target. I started using it when I had a chronic sinus infection. It got all sorts of stuff out that antibiotics likely never would have touched. I recommend having a box of Kleenex available for after the rinse. I use it now when I feel a sinus infection coming on (pain in my cheek or upper jaw bone). It stops it short after a day or two. Just follow the directions and be sure to use distilled water. Never use tap water.

Oh, it may be helpful to write up a list of your symptoms with approximate dates for when you see the doctor. That way, you don't have to worry about forgetting something.

jenbird
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Re: Not diagnosed yet, but what do you all think?

Post by jenbird » Thu Apr 15, 2021 3:28 am

Thank you for the reply! I've been writing things down so as I remember so I can share them at my appointment. (My memory is also terrible! 😅)
I do have a neti pot. I am trying to be more consistent and use it at the first sign. I have distilled water for my cpap so I use that.
I really appreciate your input!

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NHE
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Re: Not diagnosed yet, but what do you all think?

Post by NHE » Fri Apr 16, 2021 12:16 am

jenbird wrote:
Thu Apr 15, 2021 3:28 am
Thank you for the reply! I've been writing things down so as I remember so I can share them at my appointment. (My memory is also terrible! 😅)
I do have a neti pot. I am trying to be more consistent and use it at the first sign. I have distilled water for my cpap so I use that.
I really appreciate your input!
I've never used a neti pot. I imagine that just utilizes a gravity based flow. The NeilMed squeeze bottle may yield a more vigorous rinse.

By the way, do you take any supplements? If so, which ones and how much?

jenbird
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Re: Not diagnosed yet, but what do you all think?

Post by jenbird » Fri Apr 16, 2021 4:08 am

That is something I never considered about the squeeze bottle rinse. I'll have to look into that.
I do not take supplements at this time. I've taken different things in the past, like multi vitamin. Several years ago I was diagnosed with low vitamin D after a blood test indicated it, and took a prescription dosage for a short while.

Another question,, I have a copy of a MRI written report and it doesn't seem very comprehensive. It mentions "multiple" and "nonspecific foci". Is that the same as lesions? And where it says "no active plaque" does it mean what I was feeling at the time of the MRI wasn't originating in my brain? From what I've read for lesions to be attributed to MS they need to be in different places and from different times. Is there a more specific report somewhere that they didn't show me? Or was it not examined that closely since it was done in an ER setting?

I am, of course, going to ask my provider these things, but just curious if you or anyone here has any insight. Also, has anyone heard of or experienced the calcifications like I have in my choroid plexus. Is it related? My PCP sort of blew them off as not important, but seems important to me. I can't find much about that at all in my googling. :-D

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Re: Not diagnosed yet, but what do you all think?

Post by NHE » Fri Apr 16, 2021 5:58 am

jenbird wrote:
Fri Apr 16, 2021 4:08 am
That is something I never considered about the squeeze bottle rinse. I'll have to look into that.
I do not take supplements at this time. I've taken different things in the past, like multi vitamin. Several years ago I was diagnosed with low vitamin D after a blood test indicated it, and took a prescription dosage for a short while.
Ok. I was thinking that some vitamin K2 might help with your calcification issue. Vitamin K2 helps reduce vascular calcification. However, I don't know if it will benefit the choroid plexus.
jenbird wrote:
Fri Apr 16, 2021 4:08 am
Another question,, I have a copy of a MRI written report and it doesn't seem very comprehensive. It mentions "multiple" and "nonspecific foci". Is that the same as lesions?
Yes.
jenbird wrote:
Fri Apr 16, 2021 4:08 am
And where it says "no active plaque" does it mean what I was feeling at the time of the MRI wasn't originating in my brain?
You likely had a scan series done with the contrast agent gadolinium. This is used to distinguish active lesions from inactive ones. Active meaning sites of ongoing inflammation where white blood cells are crossing the blood brain barrier.
jenbird wrote:
Fri Apr 16, 2021 4:08 am
From what I've read for lesions to be attributed to MS they need to be in different places and from different times. Is there a more specific report somewhere that they didn't show me? Or was it not examined that closely since it was done in an ER setting?

I am, of course, going to ask my provider these things, but just curious if you or anyone here has any insight. Also, has anyone heard of or experienced the calcifications like I have in my choroid plexus. Is it related? My PCP sort of blew them off as not important, but seems important to me. I can't find much about that at all in my googling. :-D
I'm not familiar with the significance of choroid plexus calcification.

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