August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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PEM "neuro" flare, others ever experience similar?

Discussion in 'Neurological/Neuro-sensory' started by TrixieStix, Apr 11, 2017.

  1. TrixieStix

    TrixieStix Senior Member

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    One year ago this month I experienced a severe 2 month long episode of PEM but with pronounced neurological symptoms as well. After this episode calmed down I was left in a much worse state in terms of ME/CFS severity & much decreased PEM threshold. The neuro symptoms I experienced during this episode were....

    - wokeup with pronounced vision problems in which what I was seeing was not synched up with my movements thru space. Extremely disorienting. I also had severe unilateral orbital eye pain & much increased light sensitivity in the same eye. As well as onset of "visual snow". When I tried to wear a patch over my eye the visual snow would within a few minutes overtake the vision of my uncovered eye & obscure my sight. I also had uncontrollable twitching of the muscles around the eye.

    - When I would close my eyes I would get an overwhelming and very unpleasant sensation that my "head/brain" was violently bouncing up and down (like it was a basketball being dribbled). It made it impossible to fall asleep and I would lay for hours waiting for it to die down enough or me to become exhausted enough to finally be able to fall asleep. It was miserable. (It still happens now from time to time but the "bouncing" is much less violent)


    -At the same time as the vision/eye symptoms began I began having uncontrolled pronounced jerking of my left leg, arm, and head usually in unison. (not twitching)


    - A week into it I had a 22 hr long episode of unilateral facial palsy affecting only the bottom half of of the left side of my face.

    - Tinnitus and Ear Fullness

    - lots of paresthesias on my face and scalp. (one standout symptom is the sensation of ice cold water running down the back of my head) Also random episodes of painful burning sensation in areas of the right side of my face. (since then I have had a permanent Dysethesia in the right side of my face elicted by any touch)

    - I was having a lot of problems with speech in terms of finding words, saying a wrong random word instead of the word I intended to say. Also mixing sentences up by saying last words of the sentence in middle or beginning of the sentence. I also had a strange one time thing happen where I went to respond in conversation with a friend and all I could get out were the first couple syllables of the first word and had this bizarre feeling of being physically unable to speak. A feeling of surrealness accompanied it as well. I waited a few minutes and it passed and I was able to speak normally again. This same period of time that evening I was also having marked difficulties with my balance when walking that I yet to experience again in the same way.

    NOT DONE YET....
     
    Last edited: Apr 11, 2017
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  2. Valentijn

    Valentijn WE ARE KINA

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    @TrixieStix - Have you been checked out for mitochondrial myopathy? "Stroke-like episodes" affecting the right or left side of the body (hemiplegia or hemiparesis) for an extended period are a somewhat distinctive symptom of MELAS. Mine lasted 3 weeks. Episodes of visual disturbances can also be a symptom of mitochondrial myopathy, and jerking muscles (myoclonus/dystonia) as well.

    And it can cause the typical ME symptoms as well.
     
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  3. kangaSue

    kangaSue Senior Member

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    @TrixieStix The genetic mutation m.3243A>G MTTL1 is implicated in both stroke and mitochondrial disease;
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5215534/
     
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  4. Mohawk1995

    Mohawk1995 Senior Member

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    Visual Disturbances: Our Son had severe visual disturbances accompanied by headaches during the early days. Complete loss of seeing to the right (and left sometimes on other days)

    Leg/Head Jerks: He had these both when sleeping and when awake at times. More so in the legs, but both occasionally

    Facial Palsy: Our son did not have this, but I am a Physical Therapist and have seen plenty of it outside of those diagnosed with Stroke. One patient (not ME) had it occur after he went 3 nights without sleeping. Other patients seen in the ED and Observation Unit with it as a Transient Occurance (Labeled TIA but not sure because all tests basically negative for Stroke with usually some mild to moderate High BP)

    Word Finding: Our son had it to a degree when he had severe brain fog. My wife (who does not have ME) has it with her Atypical Migraines.

    My thoughts as a PT (not diagnosing, just theory)
    These could all be the result of imbalance in the Outflow from the Central Nervous System. In other words, the messages going out from the brain are either over active or under active creating Vision issues (highly sensitive complex), Muscle twitches because a true restful state of motor neurons is not maintained, Facial Palsy as a result of imbalance in the outflow to the facial nerve and Word Finding/Word Salad due to redistribution of neural resources away from the Language Centers of the brain usually accompanied by Brain Fog. What creates this imbalance to me is an over-reactive Neuro-protective/Neuro-Immune Response. I also believe that in a big picture this over-reactivation is a core mechanism in ME so it makes sense that you could have this occur and that you would be worse ME symptom wise afterward.
     
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  5. duncan

    duncan Senior Member

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    Borrelia tropism for cranial nerves - particularly the 7th and 8th - is well known.
     
  6. TrixieStix

    TrixieStix Senior Member

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    * I added a few things to my OP that I had forgotten.

    CONTINUED... (symptoms and things from before the "neuro flare" 1 year ago)

    Back in 2013 I had a strange mystery infection. Over some days I experienced unusual fatigue, and general malaise (no cold or flu symptoms). Then I also developed upper right quadrant pain and tenderness. I was seen at the emergency room. There is was discovered my WBC was 21,000. Doctors suspected appendicitis and did a CT scan. The CT scan did not show appendicitis, but rather it showed "inflammation with high fat stranding suggesting either diverticulitis in the area, or maybe groove pancreatitis though lipase was normal at 32". I was prescribed antibiotics and recovered.

    The very next month I developed a large Pyogenic Granuloma (yucky!) on my hand which months later was removed by a hand surgeon.

    Then the following year (2014) I suddenly started experiencing GI issues when I would eat (bloating, burping, nausea, feeling full after eating just a small amount). As a result I started to lose weight. I underwent a colonoscopy and endoscopy, but results were normal and biopsies were all normal. A gastric motility test was also normal, but the specialist said a normal test does not rule out motility issues. These symptoms have continued since but severity waxes and wanes slightly. I eat a very high fat diet to keep from losing anymore weight.

    And during this same period of time when the GI issues began I went to a neurologist complaining of....

    * intense fatigue

    * word finding difficulties

    *decreased information processing speed with worsened memory

    * mispronunciation of words and mixing up sentences

    * burning sensation in my feet and having to only wear flip-flops because of it. Sensation my feet are swollen and hot from top to bottom.

    * right facial numbness in a right periocular distribution that also involves the right upper lip and lateral aspect of the nose. A swollen sensation.

    * at times my legs feel like weights and when going up hills or stairs my partner must help by pushing me from behind.

    * episodes of feeling short of breath

    * bladder pain and urinary frequency

    * weakness and numbness in my left leg and foot

    * 12 lb weight loss over past 7 months
     
    Last edited: Apr 11, 2017
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  7. TrixieStix

    TrixieStix Senior Member

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    Btw... my sudden onset of vision changes last year during my "neuro flare" was ultimately diagnosed by a neuro-opthamologist as a rare type of migraine, "persistent visual migraine without headache", and I was told it could last weeks, months or longer. The worst of the symptoms lasted for a few months. I'm not totally convinced about the diagnosis though as I have been left with permanent changes in the vision of my right eye (chronic orbital pain, much increased light sensitivity, marked changes in contrast).
     
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  8. Bead Dog

    Bead Dog

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    Have you had your b12 and B1 levels tested? Many of your symptoms sound like possible deficiency.
     
  9. TrixieStix

    TrixieStix Senior Member

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    I have had my B12 checked a few times and it's always normal.

    My only abnormal test results thus far are very low NK Cell function of 4 (typical of ME/CFS but not specific for it).

    Also a slightly low Complement C4, and a very low Complement C3 which is not associated with ME/CFS (*not talking about C3a & C4a). In regards to the low Complement C3 I have been referred to an Immunologist in order to determine whether the low C3 is due to a genetic defect (rare) or is an acquired deficiency. I saw the rheumatologist last week about the low C3, but she still isn't seeing anything in my labs that indicates an autoimmune disease is present. The low C3 could potentially explain why I have had so many serious bacterial infections over the past 3 and a half year though (mystery intestinal infection, staph in surgical site, pseudomonas, severe c. difficle colitis. Inborn complement deficiencies are rare so I am eager to figure out what is causing it.

    My ceruloplasmin is always below normal range and my copper was found to be below normal range 6 months ago, and most recently at low end of normal even though I eat plenty of copper rich foods and have none of the known risk factors for copper deficiency. Possibility of a genetic copper disorder such as Wilson's Disease was ruled out. It was only discovered recently that low copper causes neurological damage, but I think my copper would likely need to be really low to cause that? My most recent tests done last month equate to me having a Free copper of 33 which is high, but I'm not sure how legit calculating free copper is?
     
    Last edited: Apr 13, 2017
  10. Crux

    Crux Senior Member

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    Hi @TrixieStix ,

    Sorry you're in so much pain.

    From what I've read, iron, unbound, can deposit through out the body. It's associated with numerous diseases and infections. ( microbes use it for growth )

    Brain iron deposits are found in neurodegenerative diseases, such as : Parkinson's, MS, ALS, Alzheimer's, chronic migraine, etc.

    Iron even accumulates in the eyes.

    I remember you had an abnormal MRI. Someone who knows what to look for is needed to be able to discern iron deposition from calcium, etc. ( I don't know anything about this - just read about it.)

    My thoughts are with you.
     
  11. Valentijn

    Valentijn WE ARE KINA

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    This sounds like more central sensitization bullshit. It's the foundation for a BPS theory of why people think they have symptoms.
     
  12. Mohawk1995

    Mohawk1995 Senior Member

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    Actually it is not either of those.

    Underlined parts of for emphasis:

    "Because many students have been led to believe that the autonomic nervous system is relatively primitive, most have concluded that normal regulation of this system occurs at ganglionic, or at best, spinal levels. Thus, they are often quite surprised to discover that dysfunction of the brain is typically accompanied by autonomic dysfunction that can be life-threatening. For example, patients with spinal transection can have severe hypertensive crises provoked by a full bladder, impacted colon, or even stroking of the skin. This is not to say that the spinal cord and autonomic ganglia do not play important roles in autonomic regulation. But, that the organization of autonomic output takes place at supraspinal levels.

    Extensive interconnection occurs between sites receiving visceral inputs and that control autonomic efferent outputs, between sites for the control of sympathetic versus parasympathetic nervous system output, and between sites for autonomic control and somatic, endocrine and limbic circuitry. Collectively, this set of interconnections is termed the central autonomic network."

    http://neuroscience.uth.tmc.edu/toc.htm (Section 4, Chapter 3, section 3.1)

    In medicine (good medicine), all of the research findings must fit together in order to prove that a theory is true. That means that all of the following components must agree:
    • Double Blind Randomized Control Trials
    • Anatomy and Physiology (in this case Neuroanatomy and Neurophysiology)
    • Physiological Behavior (in this case symptom presentation)
    • Clinical Presentation and response to prescribed treatment (how the symptoms present and how they respond to each specific treatment that is delivered)
    • Ultimately ... improved condition of the patient to the point that they no longer require treatment or at least to the point in which treatment provides a sustainable level of function that is acceptable to the patient.
    The challenge is that to treat patients with challenging conditions such as ME, we have not been able to identify these points and have them all come to agreement. In other words we do not have all of the answers. Unfortunately some treatments (such as the inappropriately applied use of CBT and GET to ME patients in the UK) have not only been incorrectly delivered but have been delivered in blind fashion without taking into account the 4th and 5th bullet points above. Because it was inaffective at best (apparently harmful at worst), then the remaining 3 bullet points of this "theory" naturally come into question and are ultimately being disproven.
     
  13. Valentijn

    Valentijn WE ARE KINA

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    And completely irrelevant to suggesting there's an "imbalance in the Outflow from the Central Nervous System."
     
  14. TrixieStix

    TrixieStix Senior Member

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    thanks Crux. i am keeping an eye on my Iron Saturation % as it is high at 54% and my TIBC (total iron binding capacity) is low. My hematologist is blaming my high Iron Saturation % on my hereditary blood condition, but he agrees we should check it yearly to make sure it doesn't increase further. My ferritin is normal so that's good.

    I have been thinking about paying to have my MRI evaluated online by a doctor to get another opinion. My ME/CFS specialist has also suggested we repeat the MRI to see if there have been any further changes since a year ago. I am thinking maybe wait another 6 months though. I want to see where the investigation into the low Complement C3 takes us. I saw a genetic medicine specialist a few days ago and his recommendation was to run metabolomics test on cerebral spinal fluid to test for Inborn Errors of Metabolism. But of course the catch is that insurance is not likely to cover it and the cost is $1,000. I am also not hot on the idea of undergoing a spinal tap. The doctor is checking to see what the difference in sensitivity of testing is when blood or urine is used rather than CSF.

    I found this last night and it peaked my interest as the progression of symptoms this guy has a lot of similarities to my own. He was diagnosed with ME/CFS and then it was later discovered he actually had a mitochondrial disease. I am going to ask the Genetic Medicine doctor what the cost is for testing for this.

    Mitochondrial Myopathy in Follow-up of a Patient With Chronic Fatigue Syndrome
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4748504/
     
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  15. TrixieStix

    TrixieStix Senior Member

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    Thanks for telling me about this. I found this and it does sound really similar to my own experience these past few years. I just saw a Genetic Medicine specialist a few days ago and he suggested I be tested for Inborn Errors of Metabolism, but seeing this makes me think if I was to spend any $ on genetic testing that testing for Mitochondrial Myopathy is probably a better idea. I wonder what it costs? I am going to inquire with the doctor about it.

    Mitochondrial Myopathy in Follow-up of a Patient With Chronic Fatigue Syndrome

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4748504/
     
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  16. Valentijn

    Valentijn WE ARE KINA

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    There are other ways to diagnose it. Pages 44-46 of this document show several different scoring methods: clinical, biochemical, and genetic. Even without seeing a doctor for it I score 8 out of 12 on the clinical scale, which is supposedly a "definite" diagnosis :cautious: Though that's partially due to getting 2 points from elevated self-tested blood lactate at home when thoroughly rested. The other 6 points can also be attributed ME symptoms: muscle weakness (1 point), exercise intolerance (1 point), involvement of 2+ organ systems (2 points), and decreased CPET results (2 points).

    However elevated lactate in the CSF and/or muscle biopsy are the most conclusive. Any genetic test for genetic mitochondrial mypothathy should generally be done on muscle tissue, since the cause is often heteroplasmic, and appears only in the affected tissues. So a mutation will often be present in the muscle but not in the blood or saliva. But a genetic test from a muscle biopsy would typically only include mitochondrial DNA, which is a pretty small chunk of DNA (around 16,000 alleles), so might be relatively cheap. But since it's from a biopsy, it would require a specialist medical lab, rather than a direct-to-consumer genetic service like 23andMe.

    I've also got a thread started at http://forums.phoenixrising.me/inde...cidosis-and-stroke-like-episodes-melas.48943/ with a variety of information about MELAS, the mitochondrial disease which closely resembles ME.
     
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  17. TrixieStix

    TrixieStix Senior Member

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    I was wondering how large of doses of those vitamins the guy in that article I linked to was prescribed and which gave him improvement in symptoms. Almost seems as if a person could just try the treatment and see if it helps and if it does improve symptoms then get tested. Any idea if they are talking large infused doses or just oral supplementation?
     
  18. Valentijn

    Valentijn WE ARE KINA

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    I'm hesitant about going that route. You wouldn't have an official diagnosis that way, and your unofficial one is based on guesswork. Whereas if you do have a mitochondrial disease, it's a good idea to be pretty certain. A diagnosis can help a lot with doctor and disability support issues, and make treatment a lot more targeted in the long run.

    It's also likely that there are different ways to get mitochondrial dysfunction. Genetic of course, but maybe also from other disease processes, etc. So it's possible that some supplements would help any of those a bit, and wouldn't help determine which is the cause of the problem. And it's very hit-or-miss as to whether any treatment helps patients with mitochondrial disease, so a lack of improvement from it also wouldn't prove anything.

    There are also concerns specific to mitochondrial disease. If it's a homoplasmic mutation present in all cells in a woman, or a heteroplasmic mutation present in a large majority of affected cells, there's a very good chance that children will be born badly affected. So the diagnosis can have a huge impact on reproductive choices, and can also warrant a warning to maternal relatives if positive for such a mitochondrial mutation.

    Management can vary a lot as well. Infections are known to trigger relapses in mitochondrial diseases, so vaccinations are a really good idea. But flu vaccines trigger a weird immune reaction in ME patients, so might not be a good idea. And there are known things to avoid with mitochondrial disease which might vary a bit from what we avoid as ME patients. Exercise might also be beneficial in promoting the good mitochondria in MELAS (though the support for this is very minimal), if done without elevating lactate levels, while we know it's a bad idea in ME patients.
     
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  19. TrixieStix

    TrixieStix Senior Member

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    @Valentijn I am most interested right now in getting to the bottom of why my complement C3 is so low. I want to know RIGHT NOW. lol but alas the immunologist is booking appts out 2 months so I will have to be a patient patient ;)
     
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  20. Crux

    Crux Senior Member

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    This is kind of shocking to me that the doc wants to wait to do anything when there is obvious iron overload, and , you are suffering! blast!

    The thing about brain iron deposition is, phlebotomy doesn't remove it. Phlebotomy does encourage the body's removal of iron from other organs, though.

    Iron chelators are still hit or miss with brain iron removal, and researchers are trying different combinations, even adding antioxidants.

    Antibiotics, such as minocycline have shown some iron chelating activity.

    Thanks for the article. Occipital Neuralgia describes perfectly my own type of migraine. miserable.

    I see you've had a real 'time' with copper. There's so much negative info about it, people are wary. However, there's newer research that's showing it as neuroprotective. Some studies are showing copper deficiency in the brains of alzheimer's patients.

    I've been having great results with copper, even lowering TS, and raising TIBC, UIBC, and lowering ferritin.

    Now, I've added R-lipoic acid, quercetin, and green tea to chelate brain iron. It's shown some success in animal models. I've also added more iodine, it is involved with iron metabolism, but not sure about any more.

    Since ME has many symptoms that are similar to MS, Parkinson's, AD, etc., I strongly suspect that brain iron deposition is a large part of its pathology.
     
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