Aa
Parasthesia, fatigue, lesions on brain and spinal column degeneration - Not MS
I am 42 yrs old have had severe fatigue and tingling/pins and needles in various parts of my body (face, arms, legs) along with other symptoms such as headaches, heartburn, etc for about 5 months now. The pins and needles feeling has increased to where I have that feeling somewhere for over 1/2 of every day.
My Dr. has performed 3 MRI's (brain, c-spine, t-spine) and found white matter lesions on my brain and degeneration of the spinal column. I've also had a CT scan of my circle of willis, an ultrasound of my Carotids and a Lumbar Puncture. The Dr. was confident that I had MS, however all tests for MS are negative, as was the test for Lyme Disease. The Dr. has sent me home and told me to just "live with it" as he doesn't know the causes. He said it may be fibromyalgia, but to come back in 6 months to see if the lesions in my brain have increased in size. Other than that, just call if my symptoms worsen.
I started doing some research and found that my grandfather had pernicious anemia, caused by a B12 deficiency which causes both lesions on the brain and spinal column degeneration.
Are there any other disorders that are characterized by these 2 things along with numbness/tingling, headaches, severe fatigue etc?
The fatigue is truly affecting the quality of my life, as are the pins and needles that wakes me up at night. I do not want to just "live with this", I would like to find out what's causing it. Thank you very much for your time.
My Dr. has performed 3 MRI's (brain, c-spine, t-spine) and found white matter lesions on my brain and degeneration of the spinal column. I've also had a CT scan of my circle of willis, an ultrasound of my Carotids and a Lumbar Puncture. The Dr. was confident that I had MS, however all tests for MS are negative, as was the test for Lyme Disease. The Dr. has sent me home and told me to just "live with it" as he doesn't know the causes. He said it may be fibromyalgia, but to come back in 6 months to see if the lesions in my brain have increased in size. Other than that, just call if my symptoms worsen.
I started doing some research and found that my grandfather had pernicious anemia, caused by a B12 deficiency which causes both lesions on the brain and spinal column degeneration.
Are there any other disorders that are characterized by these 2 things along with numbness/tingling, headaches, severe fatigue etc?
The fatigue is truly affecting the quality of my life, as are the pins and needles that wakes me up at night. I do not want to just "live with this", I would like to find out what's causing it. Thank you very much for your time.
OMG! I had to comment on this. It could be the prilosec! I have had it all, the tingling, pins and needles, buzzing, burning, overwhelming fatigue, insomnia and even blurred vision. It started after treatment for h-pylori, which is heavy duty acid reducers and antibiotics. In my case the acid reducer was prevacid.
I have been in contact with two other people who have had the same reaction. The one that was on prilosec took 2 years to recover. The one on prevacid took 18 months to recover. It is 3 years since the start of my neuro symptoms. I am about 60% better. The fatigue is better but I still have the neuropathy in my feet. I am not diabetic. My recovery is very slow probably due to my age. I am 72.
I have been to many doctors, neurologists, rheumatologists and alternative MDs. They all agree that my immune system got messed up and started attacking my nerves. It may have been Candida or some other infection that took hold. No one wants to admit that it was the meds that started this ball rolling but I know it was "the straw that broke the camels back".
I have been in contact with two other people who have had the same reaction. The one that was on prilosec took 2 years to recover. The one on prevacid took 18 months to recover. It is 3 years since the start of my neuro symptoms. I am about 60% better. The fatigue is better but I still have the neuropathy in my feet. I am not diabetic. My recovery is very slow probably due to my age. I am 72.
I have been to many doctors, neurologists, rheumatologists and alternative MDs. They all agree that my immune system got messed up and started attacking my nerves. It may have been Candida or some other infection that took hold. No one wants to admit that it was the meds that started this ball rolling but I know it was "the straw that broke the camels back".
That is great. You replied so promptly and efficiently!
You've taken a huge step towards your improvement
There are too many gaps in the entire approach for your dx and treatment.
And there's no wrong doing from your part. It is all because of an inefficient and may I say "dysfunctional" medical system.
The good news : There 's A LOT of hope for recovery as your Neuro's final words, are really as unreliable as his findings- or lack of.
(Part of it is because of serious time constraints, strict medical protocols, professional bias and EGO driven vs patient care driven constitution)
Sleep apnea is often a side effect of gastroscopy. Did you have the test after your gastroscopy? If no, disregard this.
Regarding the questions 5,6 and 7 since your answer was negative ( it confirmed my suspicion), so you need to get all this done ASAP!
Complete nutrient and vitamin deficiency testing,and mineral analysis are of vital importance. I simply do not understand the lack of thoroughness with so-called medical professionals. ( thank you for pointing out those deficiencies Red_ Star!)
Detox of heavy metals, liver, kidney and colon cleansing are also of paramount importance.
The connection to MS and MS like symptoms with Candida Albicans, Candidiasis and MycoToxins has been well established. It HAS to be investigated! This is often if not an underlying cause, a co-factor.
My suggestion is to consult with an experienced Naturopathic doctor.
You need somebody knowledgeable and SAFE to facilitate all this for you, and at the same time act as your overall health coach.
The medical system unfortunately cannot and will not treat you as a person. It will address only the symptoms at best, in the absence of a dx.
You also need to find a Lyme Literate Medical Doctor who is also familiar with Pathogenic Mycoplasmas ( the Lyme tick usually carries a mycoplasma co-infection) to get proper tests done for these pathogens. IgeneX is one of the few recommended labs.
The inaccuracies in lyme tests are a known fact.
Overall, the labs are 55% inaccurate!! You need to verify 100% the presence or absence of pathogens.
Your genetic predisposition(s), in the event of an underlying pathogenic
infection, will get expressed, as the pathogens are opportunistic exploiting all the weaknesses in the body. Any other weaknesses will get exploited.
Look into the research and work of Dr. Garth Nicolson (immed.org)
He's the expert in this field.
Keeping your immune system strong is the best defensive measure.
Here so far, I gave you a mainly Holistic and Naturopathic approach with some suggested specific testing and consult for difficult to detect pathogenic infections.
Purposely i did not go into many details, as it's a bit overwhelming for most. I will more than willing to elaborate on anything you are interested in.
So please do not accept statements like "live with it" or "sometimes it happens". There are so many things that can be done for your improvement and possibly complete healing.( I know, since I have done it , and have helped many others do it!)
Take your time to check the autoimmune and fibro community for related
posts and also to research the various suggestions I offered you.
Feel free to contact me -post here or p.m. me directly if you need.
Note: My advice does not constitute professional consultation.
Take care.
Blessings,
Nikodicreta
You've taken a huge step towards your improvement
There are too many gaps in the entire approach for your dx and treatment.
And there's no wrong doing from your part. It is all because of an inefficient and may I say "dysfunctional" medical system.
The good news : There 's A LOT of hope for recovery as your Neuro's final words, are really as unreliable as his findings- or lack of.
(Part of it is because of serious time constraints, strict medical protocols, professional bias and EGO driven vs patient care driven constitution)
Sleep apnea is often a side effect of gastroscopy. Did you have the test after your gastroscopy? If no, disregard this.
Regarding the questions 5,6 and 7 since your answer was negative ( it confirmed my suspicion), so you need to get all this done ASAP!
Complete nutrient and vitamin deficiency testing,and mineral analysis are of vital importance. I simply do not understand the lack of thoroughness with so-called medical professionals. ( thank you for pointing out those deficiencies Red_ Star!)
Detox of heavy metals, liver, kidney and colon cleansing are also of paramount importance.
The connection to MS and MS like symptoms with Candida Albicans, Candidiasis and MycoToxins has been well established. It HAS to be investigated! This is often if not an underlying cause, a co-factor.
My suggestion is to consult with an experienced Naturopathic doctor.
You need somebody knowledgeable and SAFE to facilitate all this for you, and at the same time act as your overall health coach.
The medical system unfortunately cannot and will not treat you as a person. It will address only the symptoms at best, in the absence of a dx.
You also need to find a Lyme Literate Medical Doctor who is also familiar with Pathogenic Mycoplasmas ( the Lyme tick usually carries a mycoplasma co-infection) to get proper tests done for these pathogens. IgeneX is one of the few recommended labs.
The inaccuracies in lyme tests are a known fact.
Overall, the labs are 55% inaccurate!! You need to verify 100% the presence or absence of pathogens.
Your genetic predisposition(s), in the event of an underlying pathogenic
infection, will get expressed, as the pathogens are opportunistic exploiting all the weaknesses in the body. Any other weaknesses will get exploited.
Look into the research and work of Dr. Garth Nicolson (immed.org)
He's the expert in this field.
Keeping your immune system strong is the best defensive measure.
Here so far, I gave you a mainly Holistic and Naturopathic approach with some suggested specific testing and consult for difficult to detect pathogenic infections.
Purposely i did not go into many details, as it's a bit overwhelming for most. I will more than willing to elaborate on anything you are interested in.
So please do not accept statements like "live with it" or "sometimes it happens". There are so many things that can be done for your improvement and possibly complete healing.( I know, since I have done it , and have helped many others do it!)
Take your time to check the autoimmune and fibro community for related
posts and also to research the various suggestions I offered you.
Feel free to contact me -post here or p.m. me directly if you need.
Note: My advice does not constitute professional consultation.
Take care.
Blessings,
Nikodicreta
1. I originally saw my family practitioner who tested for thyroid issues (for my tiredness) and did an ultrasound of my carotid arteries (to see if blockage there could be creating the pins and needles sensation). She ordered a gastroscopy to see if there was any throat damage as she had diagnosed me with acid reflux. She also ordered a sleep study, where they diagnosed me with sleep apnea. I am now using a CPAP machine, but my fatigue has not abated at all.
She then referred me to a neurologist (Dr. P) and he performed the rest of the tests. He was very focused on finding proof of MS. He said that he was confident that was the issue. The only thing he looked for other than MS was Lyme Disease as I let him know I'd had a deer tick bite.
2. The only blood tests I've had that I'm aware of were to test for Thyroid issues and Lyme disease. The brain, c-spine and t-spine MRI's were to look for MS. The CT scan of the Circle of Willis was to look for any blood flow issues as my father died of an aneurysm after multiple heart attacks. I was told the Lumbar puncture was to test for MS and also to confirm the negative blood test for Lyme Disease.
3. No tests repeated by the same or other labs (to ensure higher accuracy)
4. He has never mentioned Pathogenic Mycoplasmas.
5. I have not been tested for any deficiencies to my knowledge.
6. No metal detox has been done.
7. Did your Doctor investigate Candida Albicans overgrowth and Myco toxins? NO
8. I've had the extreme fatigue, headaches and acid reflux for about a year. I first had the "pins and needles" on June 16th in my right thigh and it lasted for about 8 hours. It then went away and returned in my arm the next day. I didn't go in to the dr. as she hadn't been able to diagnose the cause of my fatigue and headaches, so thought this would pass too. The tingling got worse and each incident last longer. In July, I experienced the pins and needles on my face, which really scared me. I now have pins and needles in places randomly on my body... on my legs mostly, but also on my hands/arms and head.
9. I had a lot of stress from December through March, but that would be the only thing I can think of that was abnormal in my life.
10. The only gastro-intestinal issue that I know of is the acid reflux. I've been taking prilosec for about 7 months now per my GP. She had me on 2 per day for the 1st month, then one a day since then.
I was diagnosed with acid reflux shortly before this began, and have been told I have sleep apnea since the tingling, etc started. The only thing my neurologist has tested for that I'm aware of is MS and Lyme disease. When it wasn't either of those issues, he told me that "sometimes it happens" where they can't find a cause and that I should just "live with it". He told me to call if my symptoms get worse or change.
She then referred me to a neurologist (Dr. P) and he performed the rest of the tests. He was very focused on finding proof of MS. He said that he was confident that was the issue. The only thing he looked for other than MS was Lyme Disease as I let him know I'd had a deer tick bite.
2. The only blood tests I've had that I'm aware of were to test for Thyroid issues and Lyme disease. The brain, c-spine and t-spine MRI's were to look for MS. The CT scan of the Circle of Willis was to look for any blood flow issues as my father died of an aneurysm after multiple heart attacks. I was told the Lumbar puncture was to test for MS and also to confirm the negative blood test for Lyme Disease.
3. No tests repeated by the same or other labs (to ensure higher accuracy)
4. He has never mentioned Pathogenic Mycoplasmas.
5. I have not been tested for any deficiencies to my knowledge.
6. No metal detox has been done.
7. Did your Doctor investigate Candida Albicans overgrowth and Myco toxins? NO
8. I've had the extreme fatigue, headaches and acid reflux for about a year. I first had the "pins and needles" on June 16th in my right thigh and it lasted for about 8 hours. It then went away and returned in my arm the next day. I didn't go in to the dr. as she hadn't been able to diagnose the cause of my fatigue and headaches, so thought this would pass too. The tingling got worse and each incident last longer. In July, I experienced the pins and needles on my face, which really scared me. I now have pins and needles in places randomly on my body... on my legs mostly, but also on my hands/arms and head.
9. I had a lot of stress from December through March, but that would be the only thing I can think of that was abnormal in my life.
10. The only gastro-intestinal issue that I know of is the acid reflux. I've been taking prilosec for about 7 months now per my GP. She had me on 2 per day for the 1st month, then one a day since then.
I was diagnosed with acid reflux shortly before this began, and have been told I have sleep apnea since the tingling, etc started. The only thing my neurologist has tested for that I'm aware of is MS and Lyme disease. When it wasn't either of those issues, he told me that "sometimes it happens" where they can't find a cause and that I should just "live with it". He told me to call if my symptoms get worse or change.
I have an appointment with my family practitioner on Thursday and I will ask to be tested for a B12 deficiency and/or pernicious anemia. I just found out last Friday that my grandfather had PA. After my neurologist basically wrote me off, my mother and I started thinking about family history, trying to find an answer. My grandfather and father both died young (heart attacks, aneurysm) so they aren't around to ask, but she remembered that my grandfather had walked with canes due to pernicious anemia.
Thank you very much for the links, I will take that information with me for my appointment on Thursday. I wanted to present any possibilities I could find to her. I will let you know what I find out. Thank you again!
Thank you very much for the links, I will take that information with me for my appointment on Thursday. I wanted to present any possibilities I could find to her. I will let you know what I find out. Thank you again!
Vitamin B12 deficiency is what i thought the moment i read degeneration of the spinal cord and then you mention your grandfather had pernicious anaemia! Well! Get tested ASAP! I'll send you some informative links.
You may be able to reverse nerve damage or improve it. I have autoimmune pernicious anaemia myself with permanent nerve damage but it did improve somewhat after a year. I currently take 2000mcg daily of sublingual (under the tongue) spray. I was told i needed B12 injections for life but i have found sublingual works. :)
You may be able to reverse nerve damage or improve it. I have autoimmune pernicious anaemia myself with permanent nerve damage but it did improve somewhat after a year. I currently take 2000mcg daily of sublingual (under the tongue) spray. I was told i needed B12 injections for life but i have found sublingual works. :)
Hey AudraWi.
Welcome to the forum.
I have some questions before I can make any useful comments.
1. Is your Doctor a LLMD?
2. What type of testing did he order and which lab(s) was/were used.
3. Where any tests repeated by the same or other labs (to ensure higher accuracy)? This is a very uncommon approach, unless there 's strong suspicion for inaccuracy.
4. Is he familiar with Pathogenic Mycoplasmas as an underlying cause?
5. Where you tested for deficiencies and if yes, what tests were performed and what were the findings?
6. Have you had any heavy metals detoxification done recently?
7. Did your Doctor investigate Candida Albicans overgrowth and Myco toxins?
8. How and when the initial onset of your symptoms appeared?
9. Where there any significant events that took place prior to the onset?
(accident, injury, trauma, reaction to vaccination, death or fear of losing a loved one, devastating news, illness or infection, etc.)
10. Do you have any digestive or gastro-intestinal issues other than heartburn?
The above questions are not in any particular sequence.
If there's anything else that you may feel that has some significance, please include it with the answers to the above questions.
Once I get your reply, I will be able to put something together for you.
You may post here or you may p.m me directly.
Take care,
Blessings
Niko
Welcome to the forum.
I have some questions before I can make any useful comments.
1. Is your Doctor a LLMD?
2. What type of testing did he order and which lab(s) was/were used.
3. Where any tests repeated by the same or other labs (to ensure higher accuracy)? This is a very uncommon approach, unless there 's strong suspicion for inaccuracy.
4. Is he familiar with Pathogenic Mycoplasmas as an underlying cause?
5. Where you tested for deficiencies and if yes, what tests were performed and what were the findings?
6. Have you had any heavy metals detoxification done recently?
7. Did your Doctor investigate Candida Albicans overgrowth and Myco toxins?
8. How and when the initial onset of your symptoms appeared?
9. Where there any significant events that took place prior to the onset?
(accident, injury, trauma, reaction to vaccination, death or fear of losing a loved one, devastating news, illness or infection, etc.)
10. Do you have any digestive or gastro-intestinal issues other than heartburn?
The above questions are not in any particular sequence.
If there's anything else that you may feel that has some significance, please include it with the answers to the above questions.
Once I get your reply, I will be able to put something together for you.
You may post here or you may p.m me directly.
Take care,
Blessings
Niko
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