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🙏
I commiserate with you, and I am so sorry that you have limitations for being able to obtain help. How utterly frustrating!
To answer the question about the MRI dye and kidneys:
I've had countless MRIs over the past 10 -14 years, several of them with dye contrast, for the same reason that you have: demyelination of brain matter of unknown etiology. Each time I was informed to drink LOTS of water to flush out the kidneys. Thus far, I have no evidence of kidney damage other than benign cysts. All blood tests show normal kidney function. I did have at least two cases of kidney infections in my mid-adult years. This Wednesday, I'll be having an ultrasound of right kidney to rule out stones or anomalies since I've had right flank pain. but that could also be due to serious issues with my lumbar spine and hip joint. I hope to find possible answers to my seemingly endless situations.
AS FOR THE DEMYELINATION: First discovered back in 2014, following symptoms that alarmingly indicated MS. I'll skip all the in-between info (I’ve delineated them in other posts within this site), but indeed I had the "classic" signs: upsetting double vision, "suspicious" left optic nerve (which an MRI later revealed 4th nerve palsy), confusion, memory issues, nerve zaps within my cranium and down the spine, facial nerve issues, fatigue, etc., inability to walk without a staggered gait, miserably failing balance testing by neurologists, and a few other concerning symptoms/issues. MRIs also revealed TIAs (Transient Ischemic Attacks). Was seen by countless "specialists" from prestigious teaching and research hospitals in NYC, and bottom line was that I had to have a yearly brain MRI to keep track of any new white matter formation. White matter "stabilized" and stopped about 3 yrs ago, but the yearly MRIs continued without contrast. I will be having another soon. A previous one ('22) showed "small but concerning changes" and I'll be addressing that with my new neurologist. I say "new" because I dismissed the neurologist that I'd been seeing since he failed to say anything about the radiologist's findings, simply had said "no changes"...and his dismissiveness is not something that anyone with demyelinating disorder wants to or should have to deal with. He also refused to write the script for the MRI in 2023, so I am way overdue for one. (I demanded a copy of the '22 radiologist's report and learned about the "small changes" after a couple of years of NO new white matter, and my primary confirmed it during a visit a few months later.) I've had disturbing symptoms that need to be addressed and will be doing so with the outstanding neurologist from a different medical practice. He has been taking care of my CRPS (chronic regional pain syndrome) which he diagnosed last year, as well as nerve damage of left leg, and is highly regarded within his field, along with 30+ years of experience.
.
To address what another mayo.connect member said: Yes, from researching, white matter can result from several sources, including long-term high cholesterol and even Lyme disease (which I had three times years ago). But I personally would not say "don't worry about it". Rather, allay your concerns and fears by having at least one more followup MRI to compare and see if any new formations are detected. DEFINITELY seek out a neurologist, preferably one with experience in this specific area. Let him/her determine "what is/isn't" reason for concern, and an action plan. Obtain and keep copies of your tests/procedures, MRIs and radiologists’ reports. I have ALL of mine, including blood tests/results. Journal any new symptoms, no matter how simple or insignificant they may seem.
It is possible that age may enter into the equation (I was about 62 when "symptoms, conditions" first emerged, and will be 76 this coming August). Brain MRIs can also reveal other issues/changes such as TIAs, shrinkage, etc. So, yes, I would advise you NOT to ignore the demyelination. For me, "out of sight, out of mind" is not an option since I STILL have balance and gait issues (actually has gotten worse, so much so that it has affected my self-esteem and mental health, and I detest being out in public unless I'm holding onto a cart; canes are valueless). I've had other more recent "developments" that have contributed to my proverbial plate, but I advocate for myself, and I'm fortunate and grateful to have wonderful medical insurance and the ability to seek professionals without needing approvals or referrals.
Hang in there, and do see if there are support groups, etc., that can help you. Possibly a center for the aging? Within Medicare itself? A research/teaching hospital?
I hope you can find answers that will alleviate your concerns/fears because I know exactly what you are experiencing. I’ll pray that you find successful avenues.🙏🏽🌺
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
PKH- I am happy to share or try to answer any questions you might have. First, I need to make sure you understand that I don't really have a clear diagnosis yet. In my toes, when it's bad, it can feel like a burning sensation, like I am just not feeling my toes in the same way as I used to. Its tolerable but annoying. As an example, I first noticed something was different when my toes just felt different on the tiled floor of the shower. Not really painful or pins & needles-just different. And then I started having the burning sensation. So intense I would just soak my feet in cold water, which really seemed to help. When I take a bath I notice my toes don't seem to like the hot water-same when I go to the gym and sit in the hot tub. It seems to vary in intensity and sensation. Sometimes I get a burning sharp pain on the top of my foot-but that is more rare. The stabbing pain in my head is on the upper right top/back area. It happens so fast and then it is gone. I don't know if my eyes have been jumping around but again, it happens so quickly. I did have a longer episode when sick with the flu earlier this month. I would estimate it lasted about 20 seconds. My husband was there when it occurred and it really scare him. It was much more intense. And then it was gone! Hope this helps you somehow. I have another doctors appt. today so away I must go! Blessings and healing your way.
I commiserate with you, and I am so sorry that you have limitations for being able to obtain help. How utterly frustrating!
To answer the question about the MRI dye and kidneys:
I've had countless MRIs over the past 10 -14 years, several of them with dye contrast, for the same reason that you have: demyelination of brain matter of unknown etiology. Each time I was informed to drink LOTS of water to flush out the kidneys. Thus far, I have no evidence of kidney damage other than benign cysts. All blood tests show normal kidney function. I did have at least two cases of kidney infections in my mid-adult years. This Wednesday, I'll be having an ultrasound of right kidney to rule out stones or anomalies since I've had right flank pain. but that could also be due to serious issues with my lumbar spine and hip joint. I hope to find possible answers to my seemingly endless situations.
AS FOR THE DEMYELINATION: First discovered back in 2014, following symptoms that alarmingly indicated MS. I'll skip all the in-between info (I’ve delineated them in other posts within this site), but indeed I had the "classic" signs: upsetting double vision, "suspicious" left optic nerve (which an MRI later revealed 4th nerve palsy), confusion, memory issues, nerve zaps within my cranium and down the spine, facial nerve issues, fatigue, etc., inability to walk without a staggered gait, miserably failing balance testing by neurologists, and a few other concerning symptoms/issues. MRIs also revealed TIAs (Transient Ischemic Attacks). Was seen by countless "specialists" from prestigious teaching and research hospitals in NYC, and bottom line was that I had to have a yearly brain MRI to keep track of any new white matter formation. White matter "stabilized" and stopped about 3 yrs ago, but the yearly MRIs continued without contrast. I will be having another soon. A previous one ('22) showed "small but concerning changes" and I'll be addressing that with my new neurologist. I say "new" because I dismissed the neurologist that I'd been seeing since he failed to say anything about the radiologist's findings, simply had said "no changes"...and his dismissiveness is not something that anyone with demyelinating disorder wants to or should have to deal with. He also refused to write the script for the MRI in 2023, so I am way overdue for one. (I demanded a copy of the '22 radiologist's report and learned about the "small changes" after a couple of years of NO new white matter, and my primary confirmed it during a visit a few months later.) I've had disturbing symptoms that need to be addressed and will be doing so with the outstanding neurologist from a different medical practice. He has been taking care of my CRPS (chronic regional pain syndrome) which he diagnosed last year, as well as nerve damage of left leg, and is highly regarded within his field, along with 30+ years of experience.
.
To address what another mayo.connect member said: Yes, from researching, white matter can result from several sources, including long-term high cholesterol and even Lyme disease (which I had three times years ago). But I personally would not say "don't worry about it". Rather, allay your concerns and fears by having at least one more followup MRI to compare and see if any new formations are detected. DEFINITELY seek out a neurologist, preferably one with experience in this specific area. Let him/her determine "what is/isn't" reason for concern, and an action plan. Obtain and keep copies of your tests/procedures, MRIs and radiologists’ reports. I have ALL of mine, including blood tests/results. Journal any new symptoms, no matter how simple or insignificant they may seem.
It is possible that age may enter into the equation (I was about 62 when "symptoms, conditions" first emerged, and will be 76 this coming August). Brain MRIs can also reveal other issues/changes such as TIAs, shrinkage, etc. So, yes, I would advise you NOT to ignore the demyelination. For me, "out of sight, out of mind" is not an option since I STILL have balance and gait issues (actually has gotten worse, so much so that it has affected my self-esteem and mental health, and I detest being out in public unless I'm holding onto a cart; canes are valueless). I've had other more recent "developments" that have contributed to my proverbial plate, but I advocate for myself, and I'm fortunate and grateful to have wonderful medical insurance and the ability to seek professionals without needing approvals or referrals.
Hang in there, and do see if there are support groups, etc., that can help you. Possibly a center for the aging? Within Medicare itself? A research/teaching hospital?
I hope you can find answers that will alleviate your concerns/fears because I know exactly what you are experiencing. I’ll pray that you find successful avenues.🙏🏽🌺
Delia, thank you so very much for sharing all that information with me and for the advice about the MRI's. I am sorry to hear all that you have been through and continue to deal with. I am going to be 72 next month and realize that getting old really puts one through the fire!
I know I need to follow up and not ignore this any longer so I will continue the search for answers. (I woke up at 4 this morning because I felt anxious. Knowing that I have lesions and one is 13mm kind of freaks me out!) I went to the gym early for a work out. I like to move so I want to try to continue as best as I am able. So far my balance is okay and I can still move fairly freely. But I do see that things have been changing. Some balance exercises are harder now than they used to be. I hear what you are saying about your self-esteem and mental health. I feel a bit that way too. If I am not at the gym or outside, I mostly stay home. And so far I have not even shared what's going on with our 2 daughters or even my siblings. I probably will soon though.
I have an appt. with a cardiologist this afternoon in Albquerque. Not really for this problem but I will definitely let him know what's going on.
Again I truly appreciate the sharing, the warmth coming forward from you and everyone on this site. I think it helps to be able to talk to others going through similar things!
I will hold you in my prayers and if there are other prayer warriors on this thread, lets continue to lift everyone up as best as we can! Blessings
PKH- I am happy to share or try to answer any questions you might have. First, I need to make sure you understand that I don't really have a clear diagnosis yet. In my toes, when it's bad, it can feel like a burning sensation, like I am just not feeling my toes in the same way as I used to. Its tolerable but annoying. As an example, I first noticed something was different when my toes just felt different on the tiled floor of the shower. Not really painful or pins & needles-just different. And then I started having the burning sensation. So intense I would just soak my feet in cold water, which really seemed to help. When I take a bath I notice my toes don't seem to like the hot water-same when I go to the gym and sit in the hot tub. It seems to vary in intensity and sensation. Sometimes I get a burning sharp pain on the top of my foot-but that is more rare. The stabbing pain in my head is on the upper right top/back area. It happens so fast and then it is gone. I don't know if my eyes have been jumping around but again, it happens so quickly. I did have a longer episode when sick with the flu earlier this month. I would estimate it lasted about 20 seconds. My husband was there when it occurred and it really scare him. It was much more intense. And then it was gone! Hope this helps you somehow. I have another doctors appt. today so away I must go! Blessings and healing your way.
Thank you Claudia72 for your kindness in responding to my message. I am sorry for your burning sensation in your toes. I am sure it is concerning to you and can be an aggravation. My PN affects both my feet/legs from just under the knee down. I have several problems with them and I must take a lot of medication to try to get some relief. It started out by tingling and numbness and then proceeded to sharp pains and burning sensaation. I feel like I am walking on an uncomfortable sandy beach all the time when walking. I have a neurological body movement which affects my balalnce and walking, so the PN really affects those problems in a negative way. Again, I appreciate you taking the time and effort to respond to me and I wish you the very best in your health journey. ❤️
P
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😴
@claudia72 ironically, I live in Phoenix and have access to Barrows, and Mayo. I also have a neurologist…My situation is the result of a very rare autoimmune disease. It damaged my nerves so I have Polyneuropathy.
I also experience pain on my head, and it is from occipital neuralgia (the nerves under the scalp are inflamed).
The brain MRIs I have had show medium atrophy in my cerebellum so they say that I have early dementia.
That atrophy has caused a rare condition called Ataxia.
Acquired Ataxia results in a loss of balance, coordination, and other “fun” things…I must use a walker now.
I wanted an appointment with Mayo to discuss treatment options and compare them with what I have been receiving.
@claudia72 ironically, I live in Phoenix and have access to Barrows, and Mayo. I also have a neurologist…My situation is the result of a very rare autoimmune disease. It damaged my nerves so I have Polyneuropathy.
I also experience pain on my head, and it is from occipital neuralgia (the nerves under the scalp are inflamed).
The brain MRIs I have had show medium atrophy in my cerebellum so they say that I have early dementia.
That atrophy has caused a rare condition called Ataxia.
Acquired Ataxia results in a loss of balance, coordination, and other “fun” things…I must use a walker now.
I wanted an appointment with Mayo to discuss treatment options and compare them with what I have been receiving.
SusanEllen66, thank you so much for the info about ataxia. I looked it up and read [and printed] an article from Mayo and I have so many of the symptoms. And, I must use a walker or cane, at least. I had occipital neurology in the past and now think that may be what is happening with the sharp pains I have been having for a long while now. See how much your words helped someone? 🥰
P
SusanEllen66, thank you so much for the info about ataxia. I looked it up and read [and printed] an article from Mayo and I have so many of the symptoms. And, I must use a walker or cane, at least. I had occipital neurology in the past and now think that may be what is happening with the sharp pains I have been having for a long while now. See how much your words helped someone? 🥰
P
@pkh3381 thank you so very much for your kind words.
I’m glad my messages about my situation are helping you. Please keep me updated as to how you’re doing with your health situation as you are comfortable.
Delia, thank you so very much for sharing all that information with me and for the advice about the MRI's. I am sorry to hear all that you have been through and continue to deal with. I am going to be 72 next month and realize that getting old really puts one through the fire!
I know I need to follow up and not ignore this any longer so I will continue the search for answers. (I woke up at 4 this morning because I felt anxious. Knowing that I have lesions and one is 13mm kind of freaks me out!) I went to the gym early for a work out. I like to move so I want to try to continue as best as I am able. So far my balance is okay and I can still move fairly freely. But I do see that things have been changing. Some balance exercises are harder now than they used to be. I hear what you are saying about your self-esteem and mental health. I feel a bit that way too. If I am not at the gym or outside, I mostly stay home. And so far I have not even shared what's going on with our 2 daughters or even my siblings. I probably will soon though.
I have an appt. with a cardiologist this afternoon in Albquerque. Not really for this problem but I will definitely let him know what's going on.
Again I truly appreciate the sharing, the warmth coming forward from you and everyone on this site. I think it helps to be able to talk to others going through similar things!
I will hold you in my prayers and if there are other prayer warriors on this thread, lets continue to lift everyone up as best as we can! Blessings
It was good to hear from you! Gracias for taking the time to post the info about your plans.
I find that both my husband and I have a full time job just keeping up with scheduling appointments, checking out info, travel to/from visits and the time spent at each appointment...
Good thing we are retired😊...
I know what you mean about anxiety and having sleep issues. Here it is 1:38 AM and I have been awake since just before midnight (I had gone to bed by 9PM because the night before I shot wide awake just a little before 4AM and I had had a painful day).
The "not knowing" the cause, the WHY, of what is happening to our bodies is what fuels our anxieties...and why I delve into whatever avenues are available to try to help myself cope.
I hope that you are able to get leads on doctors that can help you find answers so that you can then move forward with your medical problems. Definitely ask your cardiologist for names of neurologists that just may be colleagues or those that he/she knows from other practices.
Buena suerte, and if you can, please let us here on mayoconnect know how things go for you.
I appreciate your offer of prayers, and rest assured that you'll be included in mine. 🙏🏽
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😴
I used to manage a nursing home for people with Huntington's Disease, which is a genetic disorder that affects about 50% of offspring. We also had a very well attended outpatient/allied health day clinic. At this time, no one had discovered the actual gene, so there was no living diagnosis, nor was there treatment. In trying to get everyone's DNA, so many families would say "But there's no cure, so why go through all this?" My answer was always that "One day there will be, and your family could be the one that springs open the final clue."
Well, it happened. The gene was found, and the cure is being developed.
SO, my comment (long winded as it may be) is NEVER to stop looking for answers. There may not be one now, but you could be the key that opens the final door. Put the anxiety aside and look at it as a search for mankind, for all the people like us that have the same thing. And stay positive.
Connect
Connect
Like
Helpful
Hug
I commiserate with you, and I am so sorry that you have limitations for being able to obtain help. How utterly frustrating!
To answer the question about the MRI dye and kidneys:
I've had countless MRIs over the past 10 -14 years, several of them with dye contrast, for the same reason that you have: demyelination of brain matter of unknown etiology. Each time I was informed to drink LOTS of water to flush out the kidneys. Thus far, I have no evidence of kidney damage other than benign cysts. All blood tests show normal kidney function. I did have at least two cases of kidney infections in my mid-adult years. This Wednesday, I'll be having an ultrasound of right kidney to rule out stones or anomalies since I've had right flank pain. but that could also be due to serious issues with my lumbar spine and hip joint. I hope to find possible answers to my seemingly endless situations.
AS FOR THE DEMYELINATION: First discovered back in 2014, following symptoms that alarmingly indicated MS. I'll skip all the in-between info (I’ve delineated them in other posts within this site), but indeed I had the "classic" signs: upsetting double vision, "suspicious" left optic nerve (which an MRI later revealed 4th nerve palsy), confusion, memory issues, nerve zaps within my cranium and down the spine, facial nerve issues, fatigue, etc., inability to walk without a staggered gait, miserably failing balance testing by neurologists, and a few other concerning symptoms/issues. MRIs also revealed TIAs (Transient Ischemic Attacks). Was seen by countless "specialists" from prestigious teaching and research hospitals in NYC, and bottom line was that I had to have a yearly brain MRI to keep track of any new white matter formation. White matter "stabilized" and stopped about 3 yrs ago, but the yearly MRIs continued without contrast. I will be having another soon. A previous one ('22) showed "small but concerning changes" and I'll be addressing that with my new neurologist. I say "new" because I dismissed the neurologist that I'd been seeing since he failed to say anything about the radiologist's findings, simply had said "no changes"...and his dismissiveness is not something that anyone with demyelinating disorder wants to or should have to deal with. He also refused to write the script for the MRI in 2023, so I am way overdue for one. (I demanded a copy of the '22 radiologist's report and learned about the "small changes" after a couple of years of NO new white matter, and my primary confirmed it during a visit a few months later.) I've had disturbing symptoms that need to be addressed and will be doing so with the outstanding neurologist from a different medical practice. He has been taking care of my CRPS (chronic regional pain syndrome) which he diagnosed last year, as well as nerve damage of left leg, and is highly regarded within his field, along with 30+ years of experience.
.
To address what another mayo.connect member said: Yes, from researching, white matter can result from several sources, including long-term high cholesterol and even Lyme disease (which I had three times years ago). But I personally would not say "don't worry about it". Rather, allay your concerns and fears by having at least one more followup MRI to compare and see if any new formations are detected. DEFINITELY seek out a neurologist, preferably one with experience in this specific area. Let him/her determine "what is/isn't" reason for concern, and an action plan. Obtain and keep copies of your tests/procedures, MRIs and radiologists’ reports. I have ALL of mine, including blood tests/results. Journal any new symptoms, no matter how simple or insignificant they may seem.
It is possible that age may enter into the equation (I was about 62 when "symptoms, conditions" first emerged, and will be 76 this coming August). Brain MRIs can also reveal other issues/changes such as TIAs, shrinkage, etc. So, yes, I would advise you NOT to ignore the demyelination. For me, "out of sight, out of mind" is not an option since I STILL have balance and gait issues (actually has gotten worse, so much so that it has affected my self-esteem and mental health, and I detest being out in public unless I'm holding onto a cart; canes are valueless). I've had other more recent "developments" that have contributed to my proverbial plate, but I advocate for myself, and I'm fortunate and grateful to have wonderful medical insurance and the ability to seek professionals without needing approvals or referrals.
Hang in there, and do see if there are support groups, etc., that can help you. Possibly a center for the aging? Within Medicare itself? A research/teaching hospital?
I hope you can find answers that will alleviate your concerns/fears because I know exactly what you are experiencing. I’ll pray that you find successful avenues.🙏🏽🌺
-
Like -
Helpful -
Hug
2 ReactionsPKH- I am happy to share or try to answer any questions you might have. First, I need to make sure you understand that I don't really have a clear diagnosis yet. In my toes, when it's bad, it can feel like a burning sensation, like I am just not feeling my toes in the same way as I used to. Its tolerable but annoying. As an example, I first noticed something was different when my toes just felt different on the tiled floor of the shower. Not really painful or pins & needles-just different. And then I started having the burning sensation. So intense I would just soak my feet in cold water, which really seemed to help. When I take a bath I notice my toes don't seem to like the hot water-same when I go to the gym and sit in the hot tub. It seems to vary in intensity and sensation. Sometimes I get a burning sharp pain on the top of my foot-but that is more rare. The stabbing pain in my head is on the upper right top/back area. It happens so fast and then it is gone. I don't know if my eyes have been jumping around but again, it happens so quickly. I did have a longer episode when sick with the flu earlier this month. I would estimate it lasted about 20 seconds. My husband was there when it occurred and it really scare him. It was much more intense. And then it was gone! Hope this helps you somehow. I have another doctors appt. today so away I must go! Blessings and healing your way.
-
Like -
Helpful -
Hug
1 ReactionDelia, thank you so very much for sharing all that information with me and for the advice about the MRI's. I am sorry to hear all that you have been through and continue to deal with. I am going to be 72 next month and realize that getting old really puts one through the fire!
I know I need to follow up and not ignore this any longer so I will continue the search for answers. (I woke up at 4 this morning because I felt anxious. Knowing that I have lesions and one is 13mm kind of freaks me out!) I went to the gym early for a work out. I like to move so I want to try to continue as best as I am able. So far my balance is okay and I can still move fairly freely. But I do see that things have been changing. Some balance exercises are harder now than they used to be. I hear what you are saying about your self-esteem and mental health. I feel a bit that way too. If I am not at the gym or outside, I mostly stay home. And so far I have not even shared what's going on with our 2 daughters or even my siblings. I probably will soon though.
I have an appt. with a cardiologist this afternoon in Albquerque. Not really for this problem but I will definitely let him know what's going on.
Again I truly appreciate the sharing, the warmth coming forward from you and everyone on this site. I think it helps to be able to talk to others going through similar things!
I will hold you in my prayers and if there are other prayer warriors on this thread, lets continue to lift everyone up as best as we can! Blessings
-
Like -
Helpful -
Hug
2 ReactionsThank you Claudia72 for your kindness in responding to my message. I am sorry for your burning sensation in your toes. I am sure it is concerning to you and can be an aggravation. My PN affects both my feet/legs from just under the knee down. I have several problems with them and I must take a lot of medication to try to get some relief. It started out by tingling and numbness and then proceeded to sharp pains and burning sensaation. I feel like I am walking on an uncomfortable sandy beach all the time when walking. I have a neurological body movement which affects my balalnce and walking, so the PN really affects those problems in a negative way. Again, I appreciate you taking the time and effort to respond to me and I wish you the very best in your health journey. ❤️
P
-
Like -
Helpful -
Hug
1 Reaction@claudia72 ironically, I live in Phoenix and have access to Barrows, and Mayo. I also have a neurologist…My situation is the result of a very rare autoimmune disease. It damaged my nerves so I have Polyneuropathy.
I also experience pain on my head, and it is from occipital neuralgia (the nerves under the scalp are inflamed).
The brain MRIs I have had show medium atrophy in my cerebellum so they say that I have early dementia.
That atrophy has caused a rare condition called Ataxia.
Acquired Ataxia results in a loss of balance, coordination, and other “fun” things…I must use a walker now.
I wanted an appointment with Mayo to discuss treatment options and compare them with what I have been receiving.
-
Like -
Helpful -
Hug
3 ReactionsSusanEllen66, thank you so much for the info about ataxia. I looked it up and read [and printed] an article from Mayo and I have so many of the symptoms. And, I must use a walker or cane, at least. I had occipital neurology in the past and now think that may be what is happening with the sharp pains I have been having for a long while now. See how much your words helped someone? 🥰
P
-
Like -
Helpful -
Hug
2 Reactions@pkh3381 thank you so very much for your kind words.
I’m glad my messages about my situation are helping you. Please keep me updated as to how you’re doing with your health situation as you are comfortable.
Have a blessed day! 🫶🏻
-
Like -
Helpful -
Hug
1 ReactionIt was good to hear from you! Gracias for taking the time to post the info about your plans.
I find that both my husband and I have a full time job just keeping up with scheduling appointments, checking out info, travel to/from visits and the time spent at each appointment...
Good thing we are retired😊...
I know what you mean about anxiety and having sleep issues. Here it is 1:38 AM and I have been awake since just before midnight (I had gone to bed by 9PM because the night before I shot wide awake just a little before 4AM and I had had a painful day).
The "not knowing" the cause, the WHY, of what is happening to our bodies is what fuels our anxieties...and why I delve into whatever avenues are available to try to help myself cope.
I hope that you are able to get leads on doctors that can help you find answers so that you can then move forward with your medical problems. Definitely ask your cardiologist for names of neurologists that just may be colleagues or those that he/she knows from other practices.
Buena suerte, and if you can, please let us here on mayoconnect know how things go for you.
I appreciate your offer of prayers, and rest assured that you'll be included in mine. 🙏🏽
-
Like -
Helpful -
Hug
2 ReactionsI used to manage a nursing home for people with Huntington's Disease, which is a genetic disorder that affects about 50% of offspring. We also had a very well attended outpatient/allied health day clinic. At this time, no one had discovered the actual gene, so there was no living diagnosis, nor was there treatment. In trying to get everyone's DNA, so many families would say "But there's no cure, so why go through all this?" My answer was always that "One day there will be, and your family could be the one that springs open the final clue."
Well, it happened. The gene was found, and the cure is being developed.
SO, my comment (long winded as it may be) is NEVER to stop looking for answers. There may not be one now, but you could be the key that opens the final door. Put the anxiety aside and look at it as a search for mankind, for all the people like us that have the same thing. And stay positive.
-
Like -
Helpful -
Hug
2 Reactions