Multiple Sclerosis (MS) - please introduce yourself

Let’s talk about living with multiple sclerosis.
As Community Director of Connect and moderator of the Brain & Nervous System group, I noticed that several people were talking about MS, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

Hi, My Name is @darlia.. I am on Connect with other disabilities and just had an MRI on Aug 2 of the abdomen which is done every other year because I am a cancer survivor having lost my right kidney to renal cell carcinoma in 2008. So the results of the report were not available for me to read until yesterday. I read it and of course since it is a Sunday, I cannot call the clinic at the University Hospital where I go and speak with the Dr. who ordered the MRI. So here is what it says that I am concerned over and after reading what I can find online, indicates that it is related to MS. Can anyone here tell me more about what this means? Possibly a radiologist of similar technition?

Just superior to the spleen and inferior to the left hemidiaphragm is
a nonenhancing 1.6 x 1.1 cm T1 hypointense, T2 hyperintense lesion
(series 5/6 and 3/21).

Especially the terms that stood out to me are T1 hypointense and T2 hyperintense lesion. When looking this up it keeps pointing to MS.
Thank you to anyone who has any answers on this.
Darlia

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@darlia

Hi, My Name is @darlia.. I am on Connect with other disabilities and just had an MRI on Aug 2 of the abdomen which is done every other year because I am a cancer survivor having lost my right kidney to renal cell carcinoma in 2008. So the results of the report were not available for me to read until yesterday. I read it and of course since it is a Sunday, I cannot call the clinic at the University Hospital where I go and speak with the Dr. who ordered the MRI. So here is what it says that I am concerned over and after reading what I can find online, indicates that it is related to MS. Can anyone here tell me more about what this means? Possibly a radiologist of similar technition?

Just superior to the spleen and inferior to the left hemidiaphragm is
a nonenhancing 1.6 x 1.1 cm T1 hypointense, T2 hyperintense lesion
(series 5/6 and 3/21).

Especially the terms that stood out to me are T1 hypointense and T2 hyperintense lesion. When looking this up it keeps pointing to MS.
Thank you to anyone who has any answers on this.
Darlia

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Hello @darlia

As a Member of Connect, you probably already know that we are not medical professionals so we can’t interpret test results or help you reach a diagnosis. I did, however, Google, “T1 hypointense and T2 hyperintense lesions,” and it appears that when these are found in a MRI of the brain, this can point to MS. MS is usually diagnosed when there are symptoms of balance, dizziness, gait disturbance, falls, etc.

From your post, it appears that you had an MRI of the abdomen so you need to contact your doctor for more information about what this means in your case.

Would you keep in touch with us and let us know how you are doing?

Teresa

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@darlia

Hi, My Name is @darlia.. I am on Connect with other disabilities and just had an MRI on Aug 2 of the abdomen which is done every other year because I am a cancer survivor having lost my right kidney to renal cell carcinoma in 2008. So the results of the report were not available for me to read until yesterday. I read it and of course since it is a Sunday, I cannot call the clinic at the University Hospital where I go and speak with the Dr. who ordered the MRI. So here is what it says that I am concerned over and after reading what I can find online, indicates that it is related to MS. Can anyone here tell me more about what this means? Possibly a radiologist of similar technition?

Just superior to the spleen and inferior to the left hemidiaphragm is
a nonenhancing 1.6 x 1.1 cm T1 hypointense, T2 hyperintense lesion
(series 5/6 and 3/21).

Especially the terms that stood out to me are T1 hypointense and T2 hyperintense lesion. When looking this up it keeps pointing to MS.
Thank you to anyone who has any answers on this.
Darlia

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Hi Teresa,

Thank you for your response. I know that Connect is a resource for sharing AND getting answers that help in doing our own research, Along with the radiologist who reads the MRI. I read that same info by looking it up online in Medical documents, so what I’m asking for is if there is a professional who uses Connect who can answer if this points to MS.
I’ve had all of the above symptoms that you mentioned. The MRI showed this area to be superior to the spleen and near the diaphragm.
I’m still waiting for either my oncologist or neurologist to get back to me about the incidental findings. I have a rare Neuropathy diagnosed recently CAUSED by FGFR3 antibody. Already have lost feeling in many areas, my left leg and heels and both big toes, tingling and numbness in hands, weakness in back, pelvic weakness and many other symptoms.
I read that when this area is discussed, it appears near the spinal cord.
Anyone have training to give me any more info?
Darlia

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@darlia

Hi, My Name is @darlia.. I am on Connect with other disabilities and just had an MRI on Aug 2 of the abdomen which is done every other year because I am a cancer survivor having lost my right kidney to renal cell carcinoma in 2008. So the results of the report were not available for me to read until yesterday. I read it and of course since it is a Sunday, I cannot call the clinic at the University Hospital where I go and speak with the Dr. who ordered the MRI. So here is what it says that I am concerned over and after reading what I can find online, indicates that it is related to MS. Can anyone here tell me more about what this means? Possibly a radiologist of similar technition?

Just superior to the spleen and inferior to the left hemidiaphragm is
a nonenhancing 1.6 x 1.1 cm T1 hypointense, T2 hyperintense lesion
(series 5/6 and 3/21).

Especially the terms that stood out to me are T1 hypointense and T2 hyperintense lesion. When looking this up it keeps pointing to MS.
Thank you to anyone who has any answers on this.
Darlia

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Hi Darlia, @darlia

I did not realize how many symptoms you were experiencing, Darlia. I am so sorry, I can understand your concern!

At Mayo Connect we don’t have trained professionals to answer those types of questions. You will need to rely on your specialists. Your oncologist or neurologist would be the best people to answer those questions. As you have mentioned “Neuropathy diagnosed recently CAUSED by FGFR3 antibody” I’m going to tag @johnbishop. He is a volunteer moderator on Mayo Connect who has a lot of personal experience with neuropathy and if he doesn’t know an answer he can usually research some information.

Will you keep in touch and let us know how you are doing?

Teresa

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@darlia

Hi, My Name is @darlia.. I am on Connect with other disabilities and just had an MRI on Aug 2 of the abdomen which is done every other year because I am a cancer survivor having lost my right kidney to renal cell carcinoma in 2008. So the results of the report were not available for me to read until yesterday. I read it and of course since it is a Sunday, I cannot call the clinic at the University Hospital where I go and speak with the Dr. who ordered the MRI. So here is what it says that I am concerned over and after reading what I can find online, indicates that it is related to MS. Can anyone here tell me more about what this means? Possibly a radiologist of similar technition?

Just superior to the spleen and inferior to the left hemidiaphragm is
a nonenhancing 1.6 x 1.1 cm T1 hypointense, T2 hyperintense lesion
(series 5/6 and 3/21).

Especially the terms that stood out to me are T1 hypointense and T2 hyperintense lesion. When looking this up it keeps pointing to MS.
Thank you to anyone who has any answers on this.
Darlia

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Hi Teresa (@hopeful33250), I did some searching on the FGFR3 antibody for Darlia (@darlia) on another discussion she had started on FGFR3 here: https://connect.mayoclinic.org/discussion/fgfr3-antibody/bookmark/?ajax_hook=action&_wpnonce=d7e65063de.

Darlia, Teresa is right in that your question is really one for a medical specialist in neurology. Another thought – have you received chemo treatments? One of the side effects of chemo treatments is neuropathy.

John

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@darlia

Hi, My Name is @darlia.. I am on Connect with other disabilities and just had an MRI on Aug 2 of the abdomen which is done every other year because I am a cancer survivor having lost my right kidney to renal cell carcinoma in 2008. So the results of the report were not available for me to read until yesterday. I read it and of course since it is a Sunday, I cannot call the clinic at the University Hospital where I go and speak with the Dr. who ordered the MRI. So here is what it says that I am concerned over and after reading what I can find online, indicates that it is related to MS. Can anyone here tell me more about what this means? Possibly a radiologist of similar technition?

Just superior to the spleen and inferior to the left hemidiaphragm is
a nonenhancing 1.6 x 1.1 cm T1 hypointense, T2 hyperintense lesion
(series 5/6 and 3/21).

Especially the terms that stood out to me are T1 hypointense and T2 hyperintense lesion. When looking this up it keeps pointing to MS.
Thank you to anyone who has any answers on this.
Darlia

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Thank you for the sympathetic ear.
I did get ahold now of my Neurologist . He hasn’t a clue what this finding means and is referring me to St Luke’s in KC. I live in Missouri and he is at the Missouri University Hospital. He says it’s not related to MS. So the Oncologist who ORDERED the MRI hasn’t called me back and I finally contacted the supervisor of Radiology and they are discussing giving me the details and said they will call me back! John, I never have had any chemo. My right kidney was removed.

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@darlia

Hi, My Name is @darlia.. I am on Connect with other disabilities and just had an MRI on Aug 2 of the abdomen which is done every other year because I am a cancer survivor having lost my right kidney to renal cell carcinoma in 2008. So the results of the report were not available for me to read until yesterday. I read it and of course since it is a Sunday, I cannot call the clinic at the University Hospital where I go and speak with the Dr. who ordered the MRI. So here is what it says that I am concerned over and after reading what I can find online, indicates that it is related to MS. Can anyone here tell me more about what this means? Possibly a radiologist of similar technition?

Just superior to the spleen and inferior to the left hemidiaphragm is
a nonenhancing 1.6 x 1.1 cm T1 hypointense, T2 hyperintense lesion
(series 5/6 and 3/21).

Especially the terms that stood out to me are T1 hypointense and T2 hyperintense lesion. When looking this up it keeps pointing to MS.
Thank you to anyone who has any answers on this.
Darlia

Jump to this post

Darlia, sorry for confusing the issue with the question on chemo treatment. I know you must be frustrated trying to get to the bottom of what’s wrong. If it’s in the realm of possibility, Mayo Clinic Rochester is really good at diagnosing difficult to diagnose health issues. Just a thought…

John

REPLY
@darlia

Hi, My Name is @darlia.. I am on Connect with other disabilities and just had an MRI on Aug 2 of the abdomen which is done every other year because I am a cancer survivor having lost my right kidney to renal cell carcinoma in 2008. So the results of the report were not available for me to read until yesterday. I read it and of course since it is a Sunday, I cannot call the clinic at the University Hospital where I go and speak with the Dr. who ordered the MRI. So here is what it says that I am concerned over and after reading what I can find online, indicates that it is related to MS. Can anyone here tell me more about what this means? Possibly a radiologist of similar technition?

Just superior to the spleen and inferior to the left hemidiaphragm is
a nonenhancing 1.6 x 1.1 cm T1 hypointense, T2 hyperintense lesion
(series 5/6 and 3/21).

Especially the terms that stood out to me are T1 hypointense and T2 hyperintense lesion. When looking this up it keeps pointing to MS.
Thank you to anyone who has any answers on this.
Darlia

Jump to this post

Hi Darlia, @darlia

I’m glad that you heard back from the neurologist. I agree with John that a second opinion at Mayo might be a good idea. I’m not in the Missouri area, so I don’t know anything about St. Luke’s in KC but Mayo has an excellent reputation .

Keep in touch and let us know how you are doing.

Teresa

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@darlia I completely understand your frustration with not having call backs from doctors offices and they don’t know what the scans they ordered mean. I am in agreement with everyone else that a trip to Mayo might be beneficial into to finding out what is wrong with you. I had to make that trip myself to find out what was wrong with me.

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I had a rough weekend and I am just now feeling up to writing. Our church had their annual Prairie Fest and we were there from 5-10:30 on Friday, on Saturday from 12-10:30, and on Sunday from 11-5 after church. My arms were so sore today I couldn’t put on my socks because I could barely raise my arm and my muscles hurt. My legs were numb and so stiff it hurt to bend my knees. I had shooting pain down my neck and back and my fingers were stiff with tingling pain. I had headaches that wouldn’t go away even with meds. My face is numb on one side and I can barely hear out the ear on that side. I am feeling tired so I will close for now.

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@kcowan16

Hi, I’m Kim I was just diagnosed with MS in April 2017 @ the Mayo Clinic. Not exactly sure what to expect from this disease but determined to live the best life I can!

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Wow! Reading what you published here is like looking in the mirror! But I HAVE NOT been diagnosed with MS! (Yet!)
My life is the same. Including the not knowing what it feels like to NOT have pain. I always snicker at the medical appts/tests and procedures when they ask you “do you have any pain?” Ha ha ha!! I NEVER get to say no. Okay, if I’m just waking up from maybe yes!
But as for this keep n keeping on. This old world will get better some day. The Bible promises this!
Cyber Hugs to you!

PS.. I’ve been to Mayo in Scottsdale. AZ in 2010. If I can I’ll make an appt there for this Winter

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Hello Rob @disneyfan

Thanks for checking in with us. Hmm, Prairie Fest – I haven’t heard of that before – can you tell us some more?

I am sorry to hear of your symptoms after being busy, however, neurological disorders are like that. In order to keep your symptoms at bay it is important to moderate your activity level with resting. It really does involve achieving a different lifestyle but it is well worth the adjustment in order to avoid the extreme symptoms you describe in your post. Here is some info from the National MS Foundation regarding fatigue and MS http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Fatigue

How are you feeling this morning?

Teresa

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@kcowan16

Hi, I’m Kim I was just diagnosed with MS in April 2017 @ the Mayo Clinic. Not exactly sure what to expect from this disease but determined to live the best life I can!

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Hello Darlia @darlia

Nice to hear from you.
I am glad to hear that Mayo in Scottsdale is familiar to you. Will you keep us posted and let us know how you are feeling?

Teresa

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@kcowan16

@darlia I completely understand your frustration with not having call backs from doctors offices and they don’t know what the scans they ordered mean. I am in agreement with everyone else that a trip to Mayo might be beneficial into to finding out what is wrong with you. I had to make that trip myself to find out what was wrong with me.

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@kcowan16

Thanks for your encouraging words. How are you feeling these days?

Teresa

Liked by Kcowan16

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@kcowan16

@darlia I completely understand your frustration with not having call backs from doctors offices and they don’t know what the scans they ordered mean. I am in agreement with everyone else that a trip to Mayo might be beneficial into to finding out what is wrong with you. I had to make that trip myself to find out what was wrong with me.

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@hopeful33250. I am ok most days. I am getting use to taking my Plegridy injections every two weeks. In the back of my mind I am worried that I might have another flare when the seasons change and what new or old symptoms will appear. Hopefully the meds will be in my system good enough to prevent this from happening.

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