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kriss86
@kriss86

Posts: 6
Joined: Feb 12, 2019

Weird symptoms

Posted by @kriss86, Tue, Feb 12 3:08pm

Hi over the past month or so I have had a variety of symptoms. First were frequent saliva and swallowing. Then a metal taste in mouth and swollen tongue. Last week I had numbness in on my left side of my face and now half my tongue on that side is numb and for the past few days my left arm and leg feel very heavy and hard to use. On top of all of this I have had severe fatigue just tired all of the time. So my question is does this sound like multiple sclerosis a few months before these symptoms I was having like burning itch sensation after taking showers and would feel like internal tremors through out my body and itching tongue that would come and go also I kept biting my tongue in the middle of the night a few weeks ago it’s like symptoms keep adding on and coming and going it’s very nerve racking an help would be appreciated!

REPLY

@cokie63

@ambrose Hi, how did you get tested for the MTHFR genes? Did you do the swab or blood work? I've been reading up on that but my insurance company won't cover the blood test. I read that if you have your B levels checked and folate along with homocystein, those results together will let you know if you're B deficient. Do you know if that is another way? I also read thiamine is safe to take and doesn't cause any side affects of toxicity.

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I go to a functional doctor in Tulsa Oklahoma actually Jenks which is a suburb of Tulsa. He tested and has a laboratory that works with him that has offered to do the testing for whatever the insurance pays and at the time my insurance did pay a little bit. It was a blood test and yes they did test for homocysteine levels and yes after that they told me that I needed methylated B vitamins. The folate thing was really eye-opening to me because I have been taking folic acid for years thinking I was doing a good thing and probably causing myself some trouble most notably anxiety! As soon as I got on the methylated B vitamins anxiety levels went way down like 85%. I’m scheduled to go back soon and they want to retest homocysteine levels because I was in the yellow zone not the red zone but definitely the little bit of a danger zone.

Hi everyone, I am new to these groups and very thankful to anyone who replies. I feel overwhelmed, exhausted and frustrated. I don't know where else to turn.
In 2011, I had papillary thyroid cancer. I didn't think much of it. At the time I was never sick, homeschooled 3 of my 4 kiddos, ran my own business and worked out 3-4 times a day in preparation for a fitness competition. I was a weight lifter. In 2012 migraines became intollerable and found out that I had a massive pineal gland tumor that required surgery. I had brain surgery at the end of 2012. I still thought little of it and fully expected to return to my normal life within a reasonable period of time. I thought I was recouping through most of 2013. I finally went to a pain doc because everything seemed wrong. He was painfully dismissive and I quickly gave up. I'm not looking for meds….I'm seeking an explanation. I went down a rheumatologist realm with little to mention of it aside from a POTS, Ehlers Danlos, APS and small fiber neuropathy diagnosis. None of these things seem to fully explain how I'm feeling. They also found that I had abnormal nail fold capillaries and am consistently IGG subclass deficient also ANA positivity that comes and goes with equivocal dsdna. I'm sure I'm leaving some things out. I have had too many surgeries to count now. In the last 2 months I have had a nerve sheath tumor removed from my thigh and 2 more "tumors" removed from my neck which they thought were also nerve sheath tumors and were actually inflamed lymph nodes. I can't do anything. I walk with a cane. I can barely make it up the stairs. I weigh 90 lbs. My brain tells me to quit trying to figure this out, but my heart says I have 4 kids that deserve answers. My father died in his early 50s from undiagnosed Hodgkin's. We found out he had cancer at autopsy. The docs all told me his tests, biopsies and exploratory surgeries were all "normal". What do I do? Do I give up? I don't feel that any of my docs care about anything other than surgeries. I can't find any help. I keep trying to self diagnose on the internet, but let's face it….it's always wrong. If anyone can direct me or if this speaks to anyone….please let me know. I just want an answer. I have constant joint/muscle/bone pain body wide. I have no energy at all. I have insomnia. I have chronic migraine. I am always dizzy and nauseated. Depression is an understatement, but I blame it on my overall health. I e always been happy and easy to get along with. Please…if anyone has any thoughts…I need them. Thank you.

@julieparton

Hi everyone, I am new to these groups and very thankful to anyone who replies. I feel overwhelmed, exhausted and frustrated. I don't know where else to turn.
In 2011, I had papillary thyroid cancer. I didn't think much of it. At the time I was never sick, homeschooled 3 of my 4 kiddos, ran my own business and worked out 3-4 times a day in preparation for a fitness competition. I was a weight lifter. In 2012 migraines became intollerable and found out that I had a massive pineal gland tumor that required surgery. I had brain surgery at the end of 2012. I still thought little of it and fully expected to return to my normal life within a reasonable period of time. I thought I was recouping through most of 2013. I finally went to a pain doc because everything seemed wrong. He was painfully dismissive and I quickly gave up. I'm not looking for meds….I'm seeking an explanation. I went down a rheumatologist realm with little to mention of it aside from a POTS, Ehlers Danlos, APS and small fiber neuropathy diagnosis. None of these things seem to fully explain how I'm feeling. They also found that I had abnormal nail fold capillaries and am consistently IGG subclass deficient also ANA positivity that comes and goes with equivocal dsdna. I'm sure I'm leaving some things out. I have had too many surgeries to count now. In the last 2 months I have had a nerve sheath tumor removed from my thigh and 2 more "tumors" removed from my neck which they thought were also nerve sheath tumors and were actually inflamed lymph nodes. I can't do anything. I walk with a cane. I can barely make it up the stairs. I weigh 90 lbs. My brain tells me to quit trying to figure this out, but my heart says I have 4 kids that deserve answers. My father died in his early 50s from undiagnosed Hodgkin's. We found out he had cancer at autopsy. The docs all told me his tests, biopsies and exploratory surgeries were all "normal". What do I do? Do I give up? I don't feel that any of my docs care about anything other than surgeries. I can't find any help. I keep trying to self diagnose on the internet, but let's face it….it's always wrong. If anyone can direct me or if this speaks to anyone….please let me know. I just want an answer. I have constant joint/muscle/bone pain body wide. I have no energy at all. I have insomnia. I have chronic migraine. I am always dizzy and nauseated. Depression is an understatement, but I blame it on my overall health. I e always been happy and easy to get along with. Please…if anyone has any thoughts…I need them. Thank you.

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Hi, @julieparton, and welcome to Mayo Clinic Connect. I moved your post to this existing discussion, "Weird Symptoms" in the Brain & Nervous System group, so that you can connect with others who have been interacting with @kriss86 as she seeks a diagnosis, as well. If you click VIEW & REPLY in your email notification, you will see the entire conversation and be able to take part.

Trying to get a diagnosis and some answers can be a challenge sometimes, so I wanted to introduce you to fellow Connect members participating in this conversation, like @ambrose @jenniferhunter @kriss86 @suscros68 @johnbishop @cokie63 and others, who may be able to provide some support and input from their own experiences and research as you try to understand what may be going on and decide how to proceed.

Have you considered the option of looking into getting another opinion at another medical center, @julieparton? Have you by chance seen an internal medicine physician to see if a diagnosis can be identified?

Hi, @julieparton, I would like to add my welcome to Connect along with @lisalucier and other members. I'm glad you are asking questions and trying to learn as much as you can about your health. I can understand wanting to quit trying to figure it out but I like what your heart is telling you. Another way to look at it is it's not a patients job to diagnose. That's for the doctors to do but sometimes we the patient have to keep pushing and asking for answers. We really have to be our own advocate and I think that's what you are doing. I really agree with @lisalucier about getting a second opinion or a referral to another medical center.

I'm not sure if it's an option for you, but if it is Mayo Clinic is very good at diagnosing hard to diagnose and rare conditions with their patient centered care. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@lisalucier

Hi, @julieparton, and welcome to Mayo Clinic Connect. I moved your post to this existing discussion, "Weird Symptoms" in the Brain & Nervous System group, so that you can connect with others who have been interacting with @kriss86 as she seeks a diagnosis, as well. If you click VIEW & REPLY in your email notification, you will see the entire conversation and be able to take part.

Trying to get a diagnosis and some answers can be a challenge sometimes, so I wanted to introduce you to fellow Connect members participating in this conversation, like @ambrose @jenniferhunter @kriss86 @suscros68 @johnbishop @cokie63 and others, who may be able to provide some support and input from their own experiences and research as you try to understand what may be going on and decide how to proceed.

Have you considered the option of looking into getting another opinion at another medical center, @julieparton? Have you by chance seen an internal medicine physician to see if a diagnosis can be identified?

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Thank you so much for reading and responding. I kind of feel like I'm on an island right now. We live at a relatively high elevation in Colorado right now. I have seen so many doctors and it almost seems that the more info I provide for them, the less interested and more overwhelmed they become. We are in the process of relocating to Maine, so I will look for more opinions and also look into mayo. Thank you so much. I'm very frustrated and it's so against my nature to be such a "weakling". If nothing else, the weakness and fatigue are so difficult for me to deal with. I can handle pain. I can't handle being a waste. Anyway, thank you so much. I sincerely appreciate any and all of you.

@ambrose

I go to a functional doctor in Tulsa Oklahoma actually Jenks which is a suburb of Tulsa. He tested and has a laboratory that works with him that has offered to do the testing for whatever the insurance pays and at the time my insurance did pay a little bit. It was a blood test and yes they did test for homocysteine levels and yes after that they told me that I needed methylated B vitamins. The folate thing was really eye-opening to me because I have been taking folic acid for years thinking I was doing a good thing and probably causing myself some trouble most notably anxiety! As soon as I got on the methylated B vitamins anxiety levels went way down like 85%. I’m scheduled to go back soon and they want to retest homocysteine levels because I was in the yellow zone not the red zone but definitely the little bit of a danger zone.

Jump to this post

Thank you so much for this info! Unfortunately, I have been to a functional doc and I do have the MTHFR mutation. I have been taking liquid methocobolomin (sp?) As well as l methylfolate for more than a year. Nothing has changed. Liquids tend to absorb better for me and I also have pretty severe swallowing issues for yet another unknown reason. Thank you so much for bringing it up! So many people are unaware.

@johnbishop

Hi, @julieparton, I would like to add my welcome to Connect along with @lisalucier and other members. I'm glad you are asking questions and trying to learn as much as you can about your health. I can understand wanting to quit trying to figure it out but I like what your heart is telling you. Another way to look at it is it's not a patients job to diagnose. That's for the doctors to do but sometimes we the patient have to keep pushing and asking for answers. We really have to be our own advocate and I think that's what you are doing. I really agree with @lisalucier about getting a second opinion or a referral to another medical center.

I'm not sure if it's an option for you, but if it is Mayo Clinic is very good at diagnosing hard to diagnose and rare conditions with their patient centered care. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Jump to this post

Thank you @johnbishop for the additional connections. I think more opinions from an entirely new group may help. I sure hope so!

@julieparton

Hi everyone, I am new to these groups and very thankful to anyone who replies. I feel overwhelmed, exhausted and frustrated. I don't know where else to turn.
In 2011, I had papillary thyroid cancer. I didn't think much of it. At the time I was never sick, homeschooled 3 of my 4 kiddos, ran my own business and worked out 3-4 times a day in preparation for a fitness competition. I was a weight lifter. In 2012 migraines became intollerable and found out that I had a massive pineal gland tumor that required surgery. I had brain surgery at the end of 2012. I still thought little of it and fully expected to return to my normal life within a reasonable period of time. I thought I was recouping through most of 2013. I finally went to a pain doc because everything seemed wrong. He was painfully dismissive and I quickly gave up. I'm not looking for meds….I'm seeking an explanation. I went down a rheumatologist realm with little to mention of it aside from a POTS, Ehlers Danlos, APS and small fiber neuropathy diagnosis. None of these things seem to fully explain how I'm feeling. They also found that I had abnormal nail fold capillaries and am consistently IGG subclass deficient also ANA positivity that comes and goes with equivocal dsdna. I'm sure I'm leaving some things out. I have had too many surgeries to count now. In the last 2 months I have had a nerve sheath tumor removed from my thigh and 2 more "tumors" removed from my neck which they thought were also nerve sheath tumors and were actually inflamed lymph nodes. I can't do anything. I walk with a cane. I can barely make it up the stairs. I weigh 90 lbs. My brain tells me to quit trying to figure this out, but my heart says I have 4 kids that deserve answers. My father died in his early 50s from undiagnosed Hodgkin's. We found out he had cancer at autopsy. The docs all told me his tests, biopsies and exploratory surgeries were all "normal". What do I do? Do I give up? I don't feel that any of my docs care about anything other than surgeries. I can't find any help. I keep trying to self diagnose on the internet, but let's face it….it's always wrong. If anyone can direct me or if this speaks to anyone….please let me know. I just want an answer. I have constant joint/muscle/bone pain body wide. I have no energy at all. I have insomnia. I have chronic migraine. I am always dizzy and nauseated. Depression is an understatement, but I blame it on my overall health. I e always been happy and easy to get along with. Please…if anyone has any thoughts…I need them. Thank you.

Jump to this post

@julieparton Hi Julie. In reading about the mutation you mentioned, it causes a decreased ability to detox the body and that heavy metals can accumulate. It talks about the process of methylation (detoxification) as being very inefficient and the master antioxidant that is produced is glutathione. There are suppliments for this and my doctor has me take one called Methyl CPG (Ortho Molecular) and another similar one is from Metagenics called Methycare. Both support healthy homocysteine levels. These supplements help heart patients. NAC (N-acetyly cysteine) is a precursor to glutathione. It might be that your body doesn't convert it to glutathione. I was reading about the mutation and you can have both or one of the MTHFR genes on the chromosome pairs. There are also glutathione supplements, and medical foods containing it for detoxing. My pharmacy sells them and my doctors have as well. There is also intraveneous chelation to remove metals from the body that some doctors offer. A good source for information might be the Environmental Health Center in Dallas. https://www.ehcd.com/ You can look up information, and they also have some expensive medical volumes written for doctors about treatment protocols for sale. These were written by the pioneer in the field Dr. Rea. My environmental medicine doctor recommended this and he follows these protocols.

Here are a couple links I found that explain the issues.
https://www.focusforhealth.org/mthfr-mutations/
https://www.ahajournals.org/doi/full/10.1161/01.CIR.0000165142.37711.E7
https://www.amymyersmd.com/2017/07/what-is-an-mthfr-mutation-and-what-to-do-about-it/

@jenniferhunter

@julieparton Hi Julie. In reading about the mutation you mentioned, it causes a decreased ability to detox the body and that heavy metals can accumulate. It talks about the process of methylation (detoxification) as being very inefficient and the master antioxidant that is produced is glutathione. There are suppliments for this and my doctor has me take one called Methyl CPG (Ortho Molecular) and another similar one is from Metagenics called Methycare. Both support healthy homocysteine levels. These supplements help heart patients. NAC (N-acetyly cysteine) is a precursor to glutathione. It might be that your body doesn't convert it to glutathione. I was reading about the mutation and you can have both or one of the MTHFR genes on the chromosome pairs. There are also glutathione supplements, and medical foods containing it for detoxing. My pharmacy sells them and my doctors have as well. There is also intraveneous chelation to remove metals from the body that some doctors offer. A good source for information might be the Environmental Health Center in Dallas. https://www.ehcd.com/ You can look up information, and they also have some expensive medical volumes written for doctors about treatment protocols for sale. These were written by the pioneer in the field Dr. Rea. My environmental medicine doctor recommended this and he follows these protocols.

Here are a couple links I found that explain the issues.
https://www.focusforhealth.org/mthfr-mutations/
https://www.ahajournals.org/doi/full/10.1161/01.CIR.0000165142.37711.E7
https://www.amymyersmd.com/2017/07/what-is-an-mthfr-mutation-and-what-to-do-about-it/

Jump to this post

Thank you so much, @jenniferhunter! I will look into these things. I have had my metals checked, even the odd ones and they have all come back normal. Honestly I don't even trust labs anymore! I know something is wrong. Nothing in my past would indicate that I am fabricating these things. I can't tell you how many times I have been embarrassed by a doc telling me to "drink more wine" or "take naps"…the list goes on. I'm looking forward to moving and hoping to find someone who will give me a look. I just need a bit of help navigating this whole thing. I don't even know if I want any kind of treatment…I always say that and perhaps that's why they don't try. I don't have any idea but to say I take it personally is an understatement!

@julieparton

Thank you so much, @jenniferhunter! I will look into these things. I have had my metals checked, even the odd ones and they have all come back normal. Honestly I don't even trust labs anymore! I know something is wrong. Nothing in my past would indicate that I am fabricating these things. I can't tell you how many times I have been embarrassed by a doc telling me to "drink more wine" or "take naps"…the list goes on. I'm looking forward to moving and hoping to find someone who will give me a look. I just need a bit of help navigating this whole thing. I don't even know if I want any kind of treatment…I always say that and perhaps that's why they don't try. I don't have any idea but to say I take it personally is an understatement!

Jump to this post

@julieparton I hope some of that helps. I know I have felt better doing the detox programs. There are also medical foods that are powdered for this sold by Metagenics and Orthomolecular. My local pharmacy carries them. You can search for an environmental medicine doctor at this link. https://www.aaemonline.org/find.php (American Academy of Environmental Medicine)

@jenniferhunter

@julieparton I hope some of that helps. I know I have felt better doing the detox programs. There are also medical foods that are powdered for this sold by Metagenics and Orthomolecular. My local pharmacy carries them. You can search for an environmental medicine doctor at this link. https://www.aaemonline.org/find.php (American Academy of Environmental Medicine)

Jump to this post

Thank you, again @ jenniferhunter! I am all about as much natural medicine as possible and I will certainly look into all if this! It's amazing to me the lack of good functional docs here in Colorado.

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