The mysterious microbial world within us is beginning to reveal its secrets, but many mysteries remain to be solved in the years to come. Dr. Diane Mathis
The gut continues to surprise. This study is on rheumatoid arthritis, but you might want to just replace RA with the term ‘autoimmune disorder’ because this study, one of the most comprehensive of its type, demonstrates how changes in gut flora may be associated with development of an autoimmune disorder.
The gut continues to surprise in this study associating altered gut flora with recent onset rheumatoid arthritis
The immune system may be presented with its greatest test of all with the gut as it determines which of the hundreds and perhaps thousands microbial species in our guts are helpful and which are harmful. If the immune system mistakes a human antigen for one of the ‘bad guys’ it will attack the body possibly causing devastating disorders like rheumatoid arthritis.
In other words, the complex microflora in our guts may give the immune system more opportunities to fail than anywhere else in the body.
Studies have shown that an autoimmune state with circulating auto-antibodies and increased pro-inflammatory cytokines is usually present for ‘many years’ before people with RA show any signs of disease. This pre-clinical state appears to set the stage for an environmental event very possibly featuring microbes that trigger a systemic attack on the joints.
The microbiome or intestinal flora clearly plays a role in establishing arthritis in animal models. Now it was time examine it’s role in humans with rheumatoid arthritis (RA).
Before we start, let’s note that an online check suggested that gut symptoms are not common in RA; i.e., the gut could play a major role in RA without producing any symptoms at all.
The Study
This study examined the gene sequences of 144 fecal samples from new onset RA patients, other RA patients, psoriatic arthritis patients and healthy controls.
One Gut Species Dominates Gut Flora in New Rheumatoid Arthritis Patients
Instead of the usual gang of bacteria, one species ‘defined’ the gut microflora in newly diagnosed RA patients. Studies to determine if the species triggered the disease are underway
The gut flora of new rheumatoid arthritis patients was ‘defined’ by a single taxon, Prevotella copri. P. copri was also found in lower amounts in healthy controls, treated RA patients and psoriatic arthritis patients, but only the flora of the new onset RA patients was ‘defined’ by a single bacterial species. Beneficial bacteria (Bacteroides, Lachnospiraceae, and Clostridia) were reduced.
Seventy-five percent of stool samples from patients newly diagnosed with rheumatoid arthritis carried P. copri compared to 21.4% of samples from healthy individuals; 11.5% from chronic, treated patients; and 37.5% from patients with psoriatic arthritis.
Interestingly, P. copri levels were normal in treated RA patients, suggesting that anti-inflammatory drugs created a less than optimum environment for the bacteria.
Others
The ability of P. copri to dominate the flora of mice, just two weeks after it was injected into them, suggested that in the right conditions it was remarkably aggressive.
An examination of P. copri’s enzymatic pathways suggested the bacteria could be hurting RA patients in other ways. It turns out that P. copri turns off metabolic factors that break down methotrexate. P. copri may then, not only may be able to initiate RA, but it may inhibit one of the major treatments for it.
Some studies suggest that that environmental event that turns pre-clinical signs of autoimmunity into a systemic attack on the joints may feature bacteria found in the mouth (periodontal areas), the airways or the gut. Prior to this study, Prevotella has mainly been associated with periodontal disease. (Keep your gums healthy!)
Getting From the Gut to the Joints (or Elsewhere)
The ability of the gut to strongly influence parts of the body outside the gut is still raising eyebrows in the medical community. In an accompanying editorial, Dr. Diane Mathis stated
“While it is not very surprising that intestinal bacteria affect susceptibility to and/or the severity of autoimmune disorders localized to the gut—notably inflammatory bowel disease—their ability to profoundly impact other immune disorders, including arthritis (Wu et al., 2010), experimental allergic encephalomyelitis (Lee et al., 2011) and type-1 diabetes (Kriegel et al., 2011), came as a surprise.”
One of the more intriguing aspects of the study were findings concerning c-reactive protein, which appears to be increased in ME/CFS, and the HLA axis, which is currently undergoing investigation in ME/CFS. Very high levels of C-reactive protein were found in the P. copri dominated RA patients, and introducing HLA alleles associated with an increased risk of getting RA into mice had ‘a profound impact’ on their gut flora and affected their gut permeability.
The immune/gut interface is growing stronger and stronger. The gut certainly influences and may cause RA and Dr. Ian Lipkin believes it may hold the key to ME/CFS as well.
Gut manipulation
Change is in the air as more studies point to gut manipulation as a possible treatment for disease
The association between P. copri and RA is just that, right now – an association. Further studies are needed to determine if it plays a role in causing it.
The study was enough, though, for some to be looking to the future of gut manipulation to treat RA and other disorders.
Gail Hecht, MD, the chief of gastroenterology at Loyola University in Chicago, told MedPage that
“The clinical implication of this is that if we can find ways to manipulate the intestinal microbiome, we may be able to have an impact on a number of diseases, including rheumatoid arthritis. That could be through diet, targeted antibiotic therapy, or by the provision of ‘good’ bacteria that might displace the Prevotella, which appears to be associated with the development of rheumatoid arthritis”
From autism to ME/CFS to autoimmune disorders, the gut and gut manipulation are getting more interest. We’re waiting for the publication of the CFIDS Association funded gut study, and Dr. Lipkin has called for a major ME/CFS gut flora study. On Health Rising look forward to more from Ken Lassesen and a blog on ‘Healing the Gut’ from Niki Gratrix in the near future.
- Elife. 2013 Nov 5;2(0). pii: e01202. doi: 10.7554/eLife.01202.Expansion of intestinal Prevotella copri correlates with enhanced susceptibility to arthritis.Scher JU, Sczesnak A, Longman RS, Segata N, Ubeda C, Bielski C, Rostron T, Cerundolo V, Pamer EG, Abramson SB, Huttenhower C, Littman DR.
Department of Medicine, New York University School of Medicine and Hospital for Joint Diseases, New York, United States.
I think it was this site where I recently read that Dr. Cheney sees a lot of folks with pain in their lower right quadrant to touch. I wonder if he’s looked into this or only noted it?
So does this mean that a pro-biotic would help with this?
Katytweety
As a nurse and a CFS/FM’s pt..and from my past nursing in research.. On totally convinced of this! While working in the emergency room from age 25 to 40.. I was “blessed” with the Shigella parasite. My GI system has never been the same even though I was treated with the correct medication and had follow up stool cultures. When you read about Shigella…and many other still parasites it does mention several complications on down the line from the parasite having been in your system ie arthritic conditions etc. when I turned 30 I began having a lot of thyroid issues and multiple other illnesses.. Then an acute Rhabdomralysis
As a nurse and a CFS/FM’s pt..and from my past nursing in GI research..I’m totally convinced of this! While working in the emergency room from age 25 to 40.. I was “blessed” with the Shigella parasite. My GI system has never been the same even though I was treated with the correct medication and had follow up stool cultures. When you read about Shigella…and many other stool parasites it does mention several complications on down the line from the parasite having been in your system ie arthritic conditions etc. when I turned 30 I began having a lot of thyroid issues and multiple other illnesses.. Then an acute drug interaction resulting in Rhabdomyalysis,renal insufficiency, g e r d, pancreas titis,sleep apnea, and tripled liver enzymes along with liapse/amylase at 130,000!! I should have been fatality..but got very lucky.( I do not drink). I then began to have issues with arthritic origin. No DX of rheumatoid arthritis yet..but definitely osteoarthritis in spine..lower and upper, fingers and wonder if this is sequeli? I just retired from doing GI research and after working and that for several years put myself on a daily probiotic answer reviewing many patients charts and noticing that this seems to be a routine for patients who had Crohn’s or ulcerative colitis. I also noted the use of a certain newer antibiotic used and IBS. I have not been on any antibiotics, but I do use a daily probiotic called Align. I felt pretty good taking that and fiber with “Calm” at night for my IBS chronic constipation for several years. however this has changed recently and I am noticing more GI symptoms with GERD, abdominal tenderness And inconsistency in stools with bloating, food intolerances and because of the costly Probiotic have had to Chg to a different one. I so agree with the GI theory..just hope help comes sooner with this discovery than it did with diagnosing my fibromyalgia!I have noticed an increase in muscle pain that was missing for the last 8 years and also increasing fatigue and more stiffness in the mornings and it sucks to return to this state of being when life is getting easier now. I will continue on as I’m doing..and try to use less sugar,gluten(harder yet) and fatty foods that I allowed back into my diet after feeling well for the last 6 yrs but at smaller infrequent amounts…what else are we to do? I’ve had 3 colonoscopies in the last 8 yrs..so trust it is a diet thing with a possible irritation of diverticulitis. So hard to eat a diet for all these intolerances . I think the one thing that always makes me hot as in seeking medical attention is that a lot of the doctors refer one back to their cfs/FM’s symptoms and will most likely tell me to live with it..sadly enough! Such a life,lol.
One lives in hope that these studies will find answers!!
Shigella is a bacterium, not a parasite.
What a fantastic site! Research has demonstrated that the probiotic in Yakult yogurt helps alleviate FM. It would be worth a shot for CFS. The Dummies Guide to Probiotics is a fascinating guide I can recommend.
Thanks for the tips Ivy 🙂
Bile salts inhibit the growth of Pevotella species in normal individuals, and the increase in Prevotella in the stools of many CFS/ME patients, as per studies by BioScreen in Melbourne Australia, can be reduced to normal by administering oral ox bile as a medication.
It is the milieu in which bacteria in the bowel compete with each other, which determines the outcomes of such internal interspecies ‘germ warfare’. Oral ox bile changes this milieu and brings about a slow but sure clinical differences in many but not all CFS/ME patients of mine.
The finding of oral streptococci in abundance, using Bioscreen’s technology, is a strong indicator that these bacteria evade the chemical defences of the upper gut e.g. stomach acid, and outcompete with the normal flora of the lower intestine.
Isn’t it obvious to everyone. We eat collagen containing food, bacterial nasties start breaking it down, our gut immune system recognizes these particles as an antigen, our gut system makes the correct antibody (differentiated for the type collagen, think maybe kidney in sausage or muscle sheathes for fibro), these antibodies go in lymph to near the heart to be pumped throughout our system, find the correct collagen and attack it. It’s the way our immune system works. It is impossible to not have been found out previously.
Which specific strains of probiotic may help with ME/CFS and what might be the correct dose?
In june 2099 I had an extensive stooltest done.
As expected (long term gastro-intestinal issues before I got ME (cfs) ) there was extreme dysbiosis.
Prevotella (anaerobic) + streptococcus + enterococcus (aerobic) were high. Too high.
Especially enterococcus were about 97 % of my aerobic bacteria, where it should be around 5%.
Prevotella was about 28% (should be less than 10%),
whereas bifidobacterium was only 0.5% and
Lactobacillus were down to 0% (!)
In 2010 a rotating treatment with ABx was started. One week per month AB and the rest of the month probiotics. This continued for about a year and a half.
I found that, while it was not curing, since then I seem to have made it one step high on my ladder. Where before I was continuously sick (really sick – extreme flu feeling with enlarged lympnodes etc), I started to notice that sometimes I got some time off that terrible unbearable sick feeling.
Now, after not being on the program anymore, I’m still standing on my first step of that ladder.
The constant sick feeling has been replaced by a “coming and going”, which for me made a tremendous difference.
I must add that I was on a strict diet too (esp. no sugars, of any kind! that includes most fruits and most processed foods, even mayonaise).
That being said, there is a gut connection. I’m sure.
It’s not the whole picture though and it doesn’t “cure” ME or CFS (the neuro-immune kind).
But it was of great worth to have my gut flora screened and doing the ABx/probiotic regimen.
I agree!
I’ve been doing a little reading up on how peripheral inflammation can become systemic and from there can induce neuroinflammation and came across some interesting stuff on leaky gut/bacterial translocation.
It appears that when LPS (the major component of the outer membrane of gram negative bacteria) leaks into the bloodstream there are two pathways by which it can be deactivated and detoxed. One is via the portal vein to the liver and a secondary route is via the lymphatic system. Normally the liver deals with the vast majority of LPS and is able to clear it entirely.
But – if the liver function is impaired, LPS clearance then falls to the lymph glands which aren’t very good at it and you end up with systemic inflammation and elevated pro-inflammatory cytokines which in turn activates and primes microglia in the brain which leads to many symptoms associated with ‘sickness behaviour’.
Primed microglia is associated with aging and the elderly are prone to an exaggerated sickness response to common infections which can often hasten cognitive decline.
Sounds plausible. I’m beginning to suspect that gut microbiota may be more of a key player than I’d previously thought.
In Belgium, is currently a large-scale research on intestinal bacteria. About 5,000 people will participate. Among these people are healthy and the sick. A large number of CFS / ME patients will participate. This group is large enough to show a connection. This study will take several years to complete. Let’s hope something will be found.
Good news, Gijs – thanks for passing that on.
I have suffered with intestinal issues for 30 yrs. This past year by adding Kombucha, cultured vegetables and kefir daily to my diet, all issues gone. It all has to do with adding good bacteria and good yeast that develops colonies in body. I took drug Xifaxan for a while and it did nothing.
Wow….we need to talk…:)
oddly enough Xifaxan made everything worse for me. My gut couldn’t tolerate it and cramped up. Major IBS return.
Same for most probiotics and yeast and whey protein.
I’m still looking for a probiotic I can tollerate. I think I tried about every kind there is. Except Kyodophilis … the only one left on my list I think …
Since taking Lyrica my IBS episodes (which are very very severe and painful) went from about 70 on a scale of 100 to 20 (!).
Yesterday all of a sudden I had a major episode again. Unbelievable painful. I’m putting my ABx regimen on a hold. It’s unbearable. Today I thought it was over but about an hour ago it started again. Can’t make any sense of it all …
My gut issues +
my autonomic nervous system (diminished HRV etc, alpha delta sleep, NMH, POTS, two day CPET test from bad to worse, …) +
my immune system (low NK cell function, low RnaseL, high elastase, low cd57, active hhv6, reactivating herpes viruses, … all the “ME” markers)
are the main focal points of my illness.
That’s the only thing I know for sure.
But how the puzzle fits or which is the chicken or the egg?
Don’t have a clue.
I’m curious what kind of gut tests did you run?
I need to do some , but not sure which is good.
I can’t find a probiotic I can tolerate either. I have both PANDAS & ME/CFS. Even lactobacillus strains trigger my pandas so I’m pretty hesitant to try them. I’m also highly allergic to yeast, including good nutritional yeasts. What do you when you’re too reactive to the good stuff? I do my best on doxycycline and diflucan together. I can’t take an antibiotic alone, but gut issues stay at bay most of the time on those two meds. I wonder if a transplant can counteract that super reactivity, like an immune system transplant?
We’re you on the body ecology diet – Donna Gates? Did you have pain and now don’t?
Audrey,
Thanks for this. This Kombucha recipe looks Quite good. I’m going to give it a go.
http://www.thekitchn.com/how-to-make-kombucha-tea-at-home-173858
I’m glad to hear that a blog on ‘Healing the Gut’ from Niki Gratrix will be posted soon – I’ve been waiting and watching for it, after reading the other posts she’s written (as in, yup, my guts are screwed up, now what can I *do* about it!)
Indeed…
I’ve cut out wheat (gluten) since then and my bloating which had reached record levels has subsided dramatically. I can also tolerate more sweets without bloating -a nice side benefit…
Homemade kefir seems to do it for me. I get the starter on Amazon and make it from powdered skim milk so it’s not so expensive. And it’s been found that lactose intolerant people (most of them) are not intolerant when the milk is fully fermented, the way one does it at home, instead of the commercial kind that is stopped early so it will taste sweet.
I also make a ranch-style salad dressing from it, adding powdered garlic and dried Italian herbs.
Here’s another fascinating study on the gut and autism. Picked this up from a link on the WPI’s Facebook site. Giving autistic mice a probiotic reduced some of their autistic behaviors.
Gut Microbes Linked to Autismlike Symptoms in Mice
5 December 2013 12:45 pm
9 Comments
Gut feeling. Scientists think this common microbe, Bacteroides fragilis, could help restore normal behavior in autism-mimicking mice.
CNRI/Science Photo Library
Gut feeling. Scientists think this common microbe, Bacteroides fragilis, could help restore normal behavior in autism-mimicking mice.
Many physicians and parents report that their autistic children have unusually severe gastrointestinal problems, such as chronic constipation or diarrhea. These observations have led some researchers to speculate that an ailing gut contributes to the disorder in some cases, but scientific data has been lacking. Now, a provocative study claims that a probiotic treatment for gastrointestinal issues can reduce autismlike symptoms in mice and suggests that this treatment could work for humans, too.
The reported incidence of gut maladies in people with autism varies wildly between published studies—from zero to more than 80%—making it difficult to establish just how commonly the two conditions go together, says principal investigator Sarkis Mazmanian, a microbiologist at the California Institute of Technology (Caltech) in Pasadena. Overall, however, the evidence seems to point toward a connection. Last year, for example, a Centers for Disease Control and Prevention study of thousands of children with developmental disabilities found that kids with autism were twice as likely as children with other types of disorders to have frequent diarrhea or colitis, an inflammation of the large intestine.
For many years, Mazmanian and his and colleagues have been studying the effects of a nontoxic strain of the bacterium Bacteroides fragilis on diseases such as Crohn’s disease, which causes intestinal inflammation and allows potentially harmful substances that should pass out of the body to leak through junctions between cells that are normally tight. Although the researchers don’t understand the mechanism, the bacterium appears to restore the damaged gut, possibly by helping close these gaps.
“The fact that we have an organism that repairs the gut makes it a very appealing” tool for testing whether gut abnormalities can contribute to autism, Mazmanian says. To explore that question, Mazmanian and colleagues at Caltech used a mouse model of autism that is thought to approximately recreate three of the disorder’s hallmark deficits: lack of social interaction, decreased communication (mice normally emit ultrasonic, birdsonglike chirps), and repetitive behaviors such as compulsive grooming or burying marbles.
The first step of the experiment was to determine whether the mice showed signs of gastrointestinal inflammation or other gut abnormalities, says microbiologist Elaine Hsiao, a postdoctoral candidate at Caltech and lead author of the study. By the time the mice were 3 weeks old, the researchers found that their intestines were indeed as leaky as those of mice that had been treated with a chemical that induces colitis. Next, the researchers tested whether they could reverse the damage by feeding the mice applesauce laced with B. fragilis for a week. A second group of autism-mimicking mice as well as a group of healthy mice ate applesauce that did not contain the bacteria. Then the group waited to see what effect the bacteria would have on the rodents’ intestines. “We didn’t know what would happen—we were hoping the bacterium would survive in the gut,” Hsiao says.
After 3 weeks, the team measured the levels of gut-derived molecules in the rodents’ bloodstream and found that the treatment had stopped up their intestinal leakage. Bacterial counts from rodents’ poop showed that although B. fragilis did not establish lasting colonies in the mice, they did “shake up the community,” of microorganisms, bringing it closer to that of the normal mice, Hsiao says. After the treatment, the autism-mimicking mice also resembled their normal peers in two behavioral tests, the authors report today in Cell. The animals no longer compulsively buried marbles in their cages and increased their ultrasonic squeaking to typical levels. They did not increase their social interactions, however, Hsiao says.
“It’s really striking that any bacterial treatment—even a transient one—could have a lasting impact on behavior,” Hsiao says. The most interesting thing about the results, she says, was not the correction of the autistic symptoms in the mice, but the clues the study provided about how the gut’s microbial population may affect the brain and behavior. The researchers found that levels of a substance called 4-ethylphenylsulfate that is produced by gut bacteria increased 46-fold in the mice with autistic symptoms, but returned to normal after treatment with B. fragilis. When the team isolated that chemical and injected it into healthy mice, the rodents showed increased anxiety, another autismlike symptom, she says. Although the substance did not provoke the symptoms seen in the previous experiment, Hsiao says that the animals’ altered response suggests that the substance could play a role in the disorder. Hundreds of other metabolic byproducts also changed in quantity after B. fragilis was administered and could have an effect, she adds.
By demonstrating that a widely used mouse model of autism does have gastrointestinal problems, and that these problems are associated with behavioral symptoms, the new research “shows us something fabulous,” says Betty Diamond, an immunologist at the Feinstein Institute for Medical Research in Manhasset, New York. She cautions, however, that it would be premature to use B. fragilis or another probiotic as a treatment in humans. “We don’t really understand” which bacterial species are important or how they colonize the gut, she says.
Although the findings are interesting, the study does not establish that the changing levels of microbes and the chemicals they produce caused any of the behavioral changes seen in the mice, says Emanuel DiCicco-Bloom, a neuroscientist at Rutgers University in New Brunswick, New Jersey. “I’d want to know more about the mechanism” by which the bacteria altered behavior in the mice before beginning to translate the findings to humans, he says. The group also didn’t investigate how the bacteria affect a normal animal, because the microbes were administered only to autistic mice, he says. It’s possible that B. fragilis could have a deleterious effect that the study didn’t detect, he says. Combined with the inherent difficulty of extrapolating findings about human autism from a mouse, he says, “I think this is less well-established than it appears.”
“We propose that after the repair of the leaky gut, neurotoxic molecules do not get into the system and cause behavioral abnormalities,” Mazmanian says. But he agrees with DiCicco-Bloom that there are alternative explanations for why the mice changed their behavior—for example, “maybe bacteria are activating nerves in the gut that are communicating with the brain,” he says. After resolving some of these questions, the group plans to initiate clinical trials in humans, Hsiao says. “We don’t want people to start applying this to humans” just yet, but “this opens the door to future research” in people.
For me this illness is an evolutionary process with development of multiple symptoms over time with some seeming to resolve and always new ones cropping up. I had two phases-first was three systemic vax rxns that caused deep aching pain of the entire arm, numerous bruises coming up everywhere, then finally arm numbnes followed several weeks later with arm tremor. Left me with intermittent episodes of deep aching arm pain. Phase two started seven months Iater induced by thinking that exercise and getting fit would help me, so I started a treadmill regimen thinking of running a marathon. Six weeks in I could feel something was very wrong! I was doing 8 miles in ~72min. but it didn’t feel right! I wasn’t getting fit with the increased effort, I was exhausted at end of sessions and after them! Something was wrong! Then I had a relapse of the tremor and arm pain. First in the most affected arm, then in both arms. Exercise was of course stopped. Six weeks later while still having arm pain/tremors I developed a GI bug. Vomiting and diarrhea and then PROFOUND lethargy. Literally couchbound. Five days into this I forced myself to make a difficult drive into the doctors. He pulled blood but didn’t know what was going on. On driving home, I had this spontaneous gush of clear fluid come out of my right nostril and then it just kept dripping for several minutes. I remember thinking, I’m so tired because of an upper respiratory virus, but I didn’t have any other symptoms of one. I developed difficulty swallowing and hearing loss. Had great difficulty preparing meals. Never developed any runny nose or other signs of an upper resp virus. Never recovered from the fatigue, and this ended most of the high functioning I had prior to this. No more work. Great difficulty with focus, planning, and multitasking, all mandatory for the work I did.
I developed diarrhea during this time in which the stool in the toilet was literally churning almost like the water was boiling but more of a slow simmer. I had my fiance look at this ~ 10 minutes later just for confirmation of the peculiar event and that I wasn’t crazy. She concurred it was real and very weird. Regular stool checks for pathogens were negative. I am curious if any of the acute onset group ever noticed this type of occurrence, and if anyone knows what kind of bug could cause gross visable churning like this?
Prior to this trainwreck the only problems I had were with low thyroid and IBS.
Amazing story, doctari!
It all seems so viral to me..
Cort,
I agree with you. The first phase with identical 10-14 day post vax. onset of arm pain, multiple hemorrhages seems likely that it induced autoimmune or autoantibodies that are still at work now. Recent skin biopsy of leg showing decreased number of small nerve fibers(SNF) and poss. autonomic neuropathy. CRPS or RSD of R arm was a presumptive diagnosis of one CFS doc. It caused burning pain like radiation or severe sunburn. That presumed autonomic neuropathy has spread to both legs. It’s the shits!
However, the acute onset after the physical stressor of exercise likely was viral . Further studies have shown high titers for EBV, HHV6 viral activation, and I developed shingles ~8/2010. Interestingly, with the GI symptoms, I tested negative for Parvo B-19. Enterovirus wasn’t tested for.
Also from reading about Dr. Cheneys recommendations, I had nagalase tested twice and it was quite elevated both times. This can be associated with retrovirus, other viruses(Herpes?) and tumors. This causes a bit of a quandary when developing a treatment plan. To immune suppress or not to? Working on IVIG for decreasing immunoglobulins, and neuropathy, but getting insurance to pay is another matter.
Thanks Cort for the most up to date info and help you give to all of us.
One other thing that has me concerned is weird back pain that started ~ 13 months ago at L5S1. It reminded me of Corriene’s(sp) neck pain in that it feels like an electric shock is put right on my spinal cord at that level. It first started when I drove anywhere for more than 30 minutes. It seems to have progressed because now it can occur when I am in bed and there is no movement whatsoever. They had me do a sitting up MRI which showed stenosis at 3 levels that was mild but I’m not sure that what is causing the electrical shock sensation. I was wondering if that might be from a vasospasm or migraine like deal in the spinal cord?
Hi Doctari
You lay have missed this one but you mentioned that you were diagnosed with CRPS.
I posted a blog recently that describes how CRPS can become a widespread multi-system condition with symptoms very much as you describe them :
http://www.cortjohnson.org/blog/2013/11/09/chronic-regional-pain-syndrome-fibromyalgia-mecfs-spreading-neuroinflammation-model/
The gush of clear fluid and subsequent functioning issues reminded me of a news story here in which a person had an Cerebral spinal fluid leak.
http://en.m.wikipedia.org/wiki/Spontaneous_cerebrospinal_fluid_leak#Signs_and_symptoms
Lee,
Thanks for the link. Great info there! I was driving on the freeway at ~ 75 mph when this occured. Glad I didn’t herniate something in my brain! I wish I hadn’t been so dense back in 2008 when this happened, but now I think I had viral encephalitis that was never diagnosed. My neurologist was thinking MS with the swallowing issues and hearing loss and he ordered an MRI about 2 weeks later. It was read as normal, but I don’t know if they would see that lesion, or sella abnormality with an MRI with dye? It would be nice to find a radiologist with CFS experience for second opinions on some of these issues.
I had the exact same study done in 7/2012 mostly because of cognitive decline. It had new lesions of 5mm diameter white matter lesion as well as global atrophy – somewhat more than expected for age. A different neurologist said it was a normal MRI. I was a pretty youthful 53 year old when all of this started, now I am 59 but feel like I’m 89 much of the time! Thanks again Lee!