Small vessel ischemic white matter disease

Posted by goodie @goodie, Sep 12, 2023

What is the outcome, Sandy answer for the hrradaches? What other symptoms get bad? How long do you survive it?

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I am 72 and just had a brain MRI wo contrast today. Already got the results. I have had weird symptoms for years but only now have things gotten to the point where I decided to try and find out what's up due to my husbands nagging me to see someone (ha! ha!) My family physician wants me to see a neurologist but there are only two here in Santa Fe, NM & I cannot get in until July 27!!! I wondered whether anyone has been to the Mayo in Jacksonville, Florida and has a recommendation for a good neurologist there. I wish we could go to the Arizona Mayo, because it would be a day's drive. However, for some oddball reason, the AZ. Mayo will not accept Blue Cross Blue Shield Federal Employees Program. It's been this way for years and its really quite sad. Years ago, I had to go all the way to the Minnesota Mayo. By the way, my MRI came out with Mild, nonspecific white matter disease but that demyelinating disease, including MS cannot be excluded and to consider a contrast MRI next. I have a history of kidney disease, been in remission for many many years now, and also wondered about that contrast material used. Seems like it can potentially really mess up kidneys. Anyone know anything about that? Thank you & have a beautiful Sunday!

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@claudia72
Welcome to Mayo Clinic Connect!
Good thing that your husband was nagging!
Let’s hope other members have some neurologist recommendations for you.
I can help answer your question regarding MRI with contrast and its effect on kidney function.
Anytime one has an MRI with contrast they do a blood test to check your creatinine level to make sure the contrast material won’t damage the kidneys.
They also want the patient to drink more water to flush it out of the system.

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@astaingegerdm

@claudia72
Welcome to Mayo Clinic Connect!
Good thing that your husband was nagging!
Let’s hope other members have some neurologist recommendations for you.
I can help answer your question regarding MRI with contrast and its effect on kidney function.
Anytime one has an MRI with contrast they do a blood test to check your creatinine level to make sure the contrast material won’t damage the kidneys.
They also want the patient to drink more water to flush it out of the system.

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Thank you for that information, Ingegerd. Appreciate it. Guess it was good that my husband nagged but in truth, I have lived with weird symptoms for years because I know that once we start down the road of testing, there seems to be no end to it! And, from what I researched, there is no actual cure for MS or most of those diseases. Makes me want to just forget about it! But, I am thinking of either Mayo or Barrows in Phoenix, which would be closer. It’s all a bit overwhelming. But I know there are people suffering much more than I am. I do believe in God and the power of prayer too. I know I am not ‘exempt’ from suffering. Just trying to remember HE who walks with me & helps carry the load on this journey.
Thank you again for responding back. And blessings to all🙏

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@claudia72

Thank you for that information, Ingegerd. Appreciate it. Guess it was good that my husband nagged but in truth, I have lived with weird symptoms for years because I know that once we start down the road of testing, there seems to be no end to it! And, from what I researched, there is no actual cure for MS or most of those diseases. Makes me want to just forget about it! But, I am thinking of either Mayo or Barrows in Phoenix, which would be closer. It’s all a bit overwhelming. But I know there are people suffering much more than I am. I do believe in God and the power of prayer too. I know I am not ‘exempt’ from suffering. Just trying to remember HE who walks with me & helps carry the load on this journey.
Thank you again for responding back. And blessings to all🙏

Jump to this post

@claudia72 tried to get an appointment with the Neurology Department at Phoenix Mayo two days ago. They wouldn’t give me an appointment because they are totally booked..

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@claudia72

I am 72 and just had a brain MRI wo contrast today. Already got the results. I have had weird symptoms for years but only now have things gotten to the point where I decided to try and find out what's up due to my husbands nagging me to see someone (ha! ha!) My family physician wants me to see a neurologist but there are only two here in Santa Fe, NM & I cannot get in until July 27!!! I wondered whether anyone has been to the Mayo in Jacksonville, Florida and has a recommendation for a good neurologist there. I wish we could go to the Arizona Mayo, because it would be a day's drive. However, for some oddball reason, the AZ. Mayo will not accept Blue Cross Blue Shield Federal Employees Program. It's been this way for years and its really quite sad. Years ago, I had to go all the way to the Minnesota Mayo. By the way, my MRI came out with Mild, nonspecific white matter disease but that demyelinating disease, including MS cannot be excluded and to consider a contrast MRI next. I have a history of kidney disease, been in remission for many many years now, and also wondered about that contrast material used. Seems like it can potentially really mess up kidneys. Anyone know anything about that? Thank you & have a beautiful Sunday!

Jump to this post

@claudia72 my MRI also shows white matter disease. Based on my investigation into this matter, it’s very common as we age so I wouldn’t stress over it.

REPLY
@claudia72

Thank you for that information, Ingegerd. Appreciate it. Guess it was good that my husband nagged but in truth, I have lived with weird symptoms for years because I know that once we start down the road of testing, there seems to be no end to it! And, from what I researched, there is no actual cure for MS or most of those diseases. Makes me want to just forget about it! But, I am thinking of either Mayo or Barrows in Phoenix, which would be closer. It’s all a bit overwhelming. But I know there are people suffering much more than I am. I do believe in God and the power of prayer too. I know I am not ‘exempt’ from suffering. Just trying to remember HE who walks with me & helps carry the load on this journey.
Thank you again for responding back. And blessings to all🙏

Jump to this post

@claudia72
I know it’s tempting to not bother with testing.
I have had more than my share last year. So many tests. I’m ok now, but testing causes anxiety and takes time. I’m 79.
I wasn’t familiar with Burrows so I googled it. It’s an impressive neurological institute! That’s a good option for you.

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@SusanEllen66

@claudia72 tried to get an appointment with the Neurology Department at Phoenix Mayo two days ago. They wouldn’t give me an appointment because they are totally booked..

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Wow, Susan Ellen, I’m sorry to hear that. Can’t they put you on a waiting list? I wouldn’t give up. I would call them daily in case something should open up. Or, perhaps you could go to either Rochester or Jacksonville.
I wouldn’t be able to go there anyway since they won’t accept my federal Blue Cross/Blue Shield federal health care. I do have Medicare too but of course, they might not cover everything so I held on to my BC/BS after o retired to cover what Medicare won’t. I will send up a prayer that something opens up for you🙏

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@SusanEllen66

@claudia72 my MRI also shows white matter disease. Based on my investigation into this matter, it’s very common as we age so I wouldn’t stress over it.

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Susan, thanks for the encouraging words. Yes, I have researched much today on white matter disease. The problem is that I have peripheral neuropathy in my toes-both feet, been going on for about 2 1/2 - 3 years. It started after I got the 3rd covid shot (first booster) and I have been getting sharp, stabbing pains in my head- same spot. Only lasts a couple of seconds and is very random. Sometimes I get nothing like that for weeks or even months, then zap! It’s the weirdest thing. And I am constantly fatigued, which for me isn’t normal as I spent 34 years in wildfire management & before that I studied ballet and modern dance… I am
very active but getting less so as of late. Something isn’t right and my doctor is suggesting possible MS. But you are right- stressing over it, is not going to be helpful. I have a 13 mm lesion so, really I am dumbfounded! Will
Continue to try and educate myself with information from only legitimate sites like the Mayo. Sorry for my lengthy replies! Gotta try and sleep now so I hope you have a good nights rest. 😴

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@astaingegerdm

@claudia72
I know it’s tempting to not bother with testing.
I have had more than my share last year. So many tests. I’m ok now, but testing causes anxiety and takes time. I’m 79.
I wasn’t familiar with Burrows so I googled it. It’s an impressive neurological institute! That’s a good option for you.

Jump to this post

Ingegerd, thank you for sharing. I’m sorry you had to endure so many tests. But glad you are okay now. Did you go to the Mayo? Yes, Barrows is impressive but they function a bit differently than most places. You can get a second opinion for a flat fee of $100. I think you send them all your tests. Maybe you don’t actually have an on-site visit for that. You can get treatment there if it is one of the diseases they treat. All of this is creating lots of anxiety and I need to get on with it & just go with the flow! But if there is no cure for many of these diseases, I can’t help but to question my pursuit for answers. Gotta get some sleep now! Take care and rest well😴

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@claudia72

Susan, thanks for the encouraging words. Yes, I have researched much today on white matter disease. The problem is that I have peripheral neuropathy in my toes-both feet, been going on for about 2 1/2 - 3 years. It started after I got the 3rd covid shot (first booster) and I have been getting sharp, stabbing pains in my head- same spot. Only lasts a couple of seconds and is very random. Sometimes I get nothing like that for weeks or even months, then zap! It’s the weirdest thing. And I am constantly fatigued, which for me isn’t normal as I spent 34 years in wildfire management & before that I studied ballet and modern dance… I am
very active but getting less so as of late. Something isn’t right and my doctor is suggesting possible MS. But you are right- stressing over it, is not going to be helpful. I have a 13 mm lesion so, really I am dumbfounded! Will
Continue to try and educate myself with information from only legitimate sites like the Mayo. Sorry for my lengthy replies! Gotta try and sleep now so I hope you have a good nights rest. 😴

Jump to this post

In reply to claudia72, I am curious. I, too, have small vessel ischemic white matter disease plus other neurological issues. You mentioned that you have PN in toes-both feet. Were you told that this was related to the white matter disease? I have PN both feet/calves and just wondered because no one has ever made that connection for me. Also, regarding the sharp, stabbing pain in your head, same spot, can you tell me where that spot is? I get the same thing, and it is getting worse, in the R temporal area. Do you have related painful sensitivity to touch in that area after the stabbing pains subside? Does it ever feel swollen in that area, like it could possibly be a vein or something? I had an episode one time in front of a Dr specialist for an entirely different thing, but she witnessed me having the episode and said that my eyes were "jumping around". Has this ever been an involvement for you? Sorry for all the questions, but it's hard to find anyone who has experenced the same symptoms as I have had and just trying to gather more information. Your help would be greatly appreciated.
P

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