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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-19-2013, 03:23 PM | #11 | |||
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My second major relapse was preceded by a large bout of heavy exercise (dance performance in several places in Europe in quick succession) + viral infection + back injury. In both situations I was left house-bound and without much food for 2-3 weeks as no-one was able to give me practical help at the time with shopping, so I was essentially slowly starving. I have hill walked since aged 6 carrying a heavy pack and in my early twenties had a few occasions where I misjudged the distance and under-estimated the quantity of food required, meaning walking up to 36 miles in one day + 5,000ft of ascent and running out of food half way through. So, though those things were infrequent they may have been the precipitating factors. I don't consider that my doing yoga for one hour in the morning is over-training, but perhaps it is the way I go about it. It's hard for me to tell when it has been suggested part of the problem is my approach to exercise. What I do know is that I am somebody who enjoys pushing my limitations and physical boundaries, and this has been a big feature of my work as well as my free time up until getting ill. It's also something I find incredibly difficult to let go of and I still persist in trying to do high energy activity even when I can barely walk (!). But that is by in large a consequence of the graded exercise advice I'm continually given in which I am told to always do the same amount regardless of how I feel. I know the neuro and assessing Dr had a preconception of what was wrong. I was actually quite strong with them and very challenging to their 'functional' diagnosis. I was feeling really put out by the whole situation until I spoke to (believe it or not), the psychiatrist. He is the only person who was speaking any sense and it was him that identified this might be the problem. He also explained to me why my arm is going into carpal spasm (blood flow restriction on already severely compromised muscles). I find it extremely weird that it was a psychiatrist that gave me this diagnosis. I have come across the glycogen deficiencies and wonder whether it could be part of the story. But I have been refused any further testing or assessment and am not under any neuro. They may even refuse the fasting test on Monday, since it is me who will be instigating it, which is ridiculous as they have never done one. I feel my hands are really tied in this situation. What I do know is that making changes to my exercise and diet pattern may have a very beneficial effect, and the only person who is making any sense whatsoever is the psychiatrist, because he is the only one giving me scientific explanations! |
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"Thanks for this!" says: | Anacrusis (01-19-2013) |
01-19-2013, 03:59 PM | #12 | ||
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Well call me crazy but your symptoms definitely sound like MG, and my weakness along with most people I know does not follow a predictable schedule. I can do well one day and not walk the next. I never know how it's going to go. It is not as predictably fatiguable as the textbook describes, though perhaps on a test it might look that way.
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"Thanks for this!" says: | wild_cat (01-20-2013) |
01-19-2013, 04:15 PM | #13 | ||
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What the heck is going on when the psychiatrist appears to know more than the doctor, and doctors think they know more than the psychiatrists?!!!!!! This was the sentence that stuck out for me in Annie´s link: The disorder has a unique "second-wind" phenomenon.[9] If a patient nearing fatigue slows exercise to a tolerable level, a point exists at which exercise may be increased again without previous symptoms. |
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"Thanks for this!" says: | wild_cat (01-20-2013) |
01-20-2013, 02:47 AM | #14 | |||
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Genetic predisposition, nutrition, enviromental exposure and the stress we put on our body all have a role in every disease.
In some disease we know (or think we know) the exact mechanism and in some we don't. No doubt that life-style changes are essential when you become ill. If you become ill it means that the combination of your genetic predisposition and other factors caused it. As you can't (yet) change your genetics, you have to change other factors. medications interfere with certain biological processes, but this is not enough. Sometimes it is not even required. It is easier to take a pill that will take care of your high blood pressure or high cholestrol, but if that is all you do, it is not going to significantly alter your risk. The psychiatrist helped because he was the only one who understood that although some people need to be encouraged to do more exercise, others need to be encouraged to do less. (a fact which was known from the time of Hippocrates). It seems as if he was the only one that did not have the "one size fits all" approach all the others had. The combination of vigurous excercise with lack of nutrition can be deleterious. You don't need to have a rare myopathy for that. Viral infections many times require a longer healing time. It's like a war that has been taking place in your body and it has to rebuild and correct the damage. This was also known from the time of Hippocrates (even before the discovery of bacteria and viruses) but this wisdom was gradually lost in our "instant fix" world. Quote:
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01-20-2013, 05:53 AM | #15 | |||
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What I want to say is this:
It seems perfectly feasible that AOS may be the cause of my symptoms. What I do not get is why this is classified as a functional disorder. As far as I (did) understand, the argument for having a 'functional' disorder was that the cause was emotional and/or behavioural. Now, IF I have AOS, the argument goes I have a dysfunctional relationship with exercise and eating that has caused me to have physical repercussions. If a patient who over-eats and has high cholesterol ultimately has a heart attack, does that mean the illness is 'functional'? Over-eating is, arguably, a behavioural problem. This doesn't mean (as I would argue in my case) that the over-eating/over-exercising is deliberate, it just means it's lead to the consequent physical illness. So what's the difference? I don't 'buy into' the use of the word 'functional' and never have. The fact that there are varied opinions on what this means between physicians makes me very confused. Let me give you an example: The neurologist who arranged for my admission said my illness was caused by an 'emotional problem' (he included ME in this category). The neurologist who assessed me on admission told me my illness was caused by a virus. The doctor who assessed me after admission told me that my illness was caused by back injury. All three explanations are classed as 'functional'. This means perhaps I have misunderstood the meaning of the term. If my illness is caused by a virus, it's not caused by an 'emotional problem', which seemed to me to be the justification for it being 'functional'. If AOS is a neuro-endocrine disorder, and I have been suffering the symptoms of untreated hypoglycemia for the last three years, why is that 'functional'? Because the cause of it was 'behavioural' in the sense I inadvertently, on a few occasions, took a lot of exercise, and due to circumstance, failed to meet calorific requirements? |
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01-20-2013, 08:36 AM | #16 | ||
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Hi Wildcat,
Have a look at this website http://forums.dinet.org/index.php?/f...ia-discussion/ This covers all sorts of autonomic nervous system issues and maybe of help to you. Rach
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Diagnosed with: Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa And Myasthenia is still a possible diagnosis depending on which Dr I see. My blog address is . . Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can, And the wisdom to hideThe bodies of Doctors I shot When they said,"You're perfectly healthy, It's All In Your Head." |
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"Thanks for this!" says: | wild_cat (01-20-2013) |
01-20-2013, 09:50 AM | #17 | |||
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Wisest Elder Ever
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I know it is terribly confusing...
Functional means that your ability to function is impaired. It is a term used when TESTING does not show organic disease. Blood work, MRI, Xrays, etc will reveal things, and then the functional term is not needed. It is like with peripheral neuropathy... over 100 causes of this! But many doctors can't or won't spend the effort to find the particular one for each patient. Instead they use Idiopathic, as a diagnosis, which means unknown. Some sensory neuropathies and the pain they cause totally elude testing, and hence doctors are not interested for the most part with patients like this. They just give palliative treatment, meaning symptom reduction. I will suggest to you wild_cat, that dancers are well known for obsessive weight control. Three of them lived next to me at one time. What happens is that calorie restriction often includes lower fat intake, and the good fats, omega-3s get avoided. These essential nutrients, form the blood brain barrier (BBB) of the brain and when that breaks down, nasty things in the blood can leak into the brain thru the microscopic openings that appear. The BBB is often looked at for Parkinson's patients. There are many papers and some appear here on our PD forum discussing leakage of toxins, bacteria and viruses into the brain that the BBB would normally exclude. Your viral illness may have traveled this route and is inflaming your brain now. People really need to rest and have adequate nutrition when ill, because once these protective barriers are breached, fixing it is not going to be likely, when the brain is concerned. The most common sequel I've seen personally to viral patients who overdo...is cardiac emergencies. The sac around the heart can be attacked by viruses and swell up compress the heart--- there is a fancy name for this-- cardiac tamponade from fluid building up in there--- which can be deadly. My son's physical education teacher had this from training when he was ill. It was a close call for him. You can find many many papers posted on our PD forum about blood brain barrier research. Just use the search function at the top of every 1st page of each forum. There are many things that doctors just can't grasp yet. Either it is too complex or all the data is not in yet. But with your viral, link in there, it seems that it should be considered.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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01-20-2013, 11:42 AM | #18 | |||
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Thank you soOOOOooo much! That is unbelievably helpful and so valuable to feel understood!!!! I don't quite know how to express my gratitude!!!
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"Thanks for this!" says: | mrsD (01-20-2013) |
01-24-2014, 05:40 AM | #19 | ||
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Hello Wild Cat.I am so curious and would really like to know how that ended for you.Have you become fully functional?
Just for helping you;my friend had the similar condition but years ago,maybe arround 15y ago and he healed and it took him over a year to heal. He was doing plemty of researches and was diagnosed with neuropathy due to viral infection along overtraining. Please answer so we could know. |
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