Aint this a kick in the head: Hello Update... - PMRGCAuk

PMRGCAuk

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Aint this a kick in the head

galp profile image
galp
11 Replies

Hello Update MS

MRI from sept that i was told was normal,

Was very much not. Had I not gone to er for low potassium,

Inwould have

and no one told me..

Dont even know how to wrap my head around this.

My sweet Rheumi was upset as well .

Apparently shortage of neurologists. Cant get in till May 26th.

I see my rheumi next week, and she is very aware of the stress effect this may have on pmr, so not decreasing Aways something

Wishing you all well

Gina

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galp profile image
galp
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11 Replies
SheffieldJane profile image
SheffieldJane

Are you saying that you have been diagnosed with MS Gina?

galp profile image
galp in reply toSheffieldJane

Mri is indicitive of it, as are some symptoms... but with pred, pmr/ .gac everything overlaps.. so will need lab work and spinal tap, so of course still hoping not..

SheffieldJane profile image
SheffieldJane in reply togalp

Let us know how it goes. It must be really hard for you at present. Keep strong.

galp profile image
galp

Thank you so much. Taking a day to wallow then on to educating and preparing for visit.

Looked at first post , wow brain fog.

To be more clear, They did another mri last night that showed suspicious for MS. As did the one in sept, which no one told me, told me was fine then . Drs office called couple times to apologize for mix up.. like matters now!

But will need to move on from that

Gina

mel-21 profile image
mel-21 in reply togalp

There were few nonespecific white spots found in my brain MRI last that none of nerologysts are concerned about them. Last mounth I reapit the MRI and I got the same result. The nerologysts tells me that they are nonespecific and are not in the typical MS area. So I don't know should I belive them or not. They say they could be age relating but then I am 38 years old to have ageing spots I should be 50 and up.

piglette profile image
piglette in reply tomel-21

White spots showing up on an MRI scan are not unusual and some can be ignored, which is presumably what has happened in your case. As the doctors say they can become more prevalent as we age. Even at 38 you are aging.

galp profile image
galp in reply topiglette

I Am hoping is the case but said moderate suspicion of ms/ demylelinating disease

so requiring further testing

But hoping neurologist thinks otherwise

Thanks for responses!

gina

mel-21 profile image
mel-21 in reply topiglette

I just had another brain MRI with contrast mounth ago. Just to see if there were any changes beacuse I was complaining about my vision. I sent the result to the Stanford neurologist the one that also told me the spots are nonespecefic and I should not worry about them. He just sent me message and told me that the spots look the same and this is reassuring that you don't have MS but we should see what's the cause of your vision problem. So I think he gonna do another scan or test to see what is the cause of vision darkening. I just don't understand how and when I've got throes white spots. 😔

SandraMarric profile image
SandraMarric

Hi. I'm so sorry about your difficulties. Please keep us all posted.

I am particularly interested as, over the last three months, I have been having incidents of numbness and floppiness particularly in my arms. I've been three times to the GP but, so far, have only been told to keep a diary of what happens when.

I hope that everything works out ok for you. Very best wishes

Jackoh profile image
Jackoh

Sorry to hear that you are going through extra stress while waiting for further diagnosis. Let us know how further tests go. All best wishes. X Jackie

galp profile image
galp in reply toJackoh

Thanks will do

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