I'm a longtime member of MedHelp forums, actually longer than my current member name (since 2004) but this is my first post on the dysautonomia forum (I think). With this being my first post in this forum-category, thought I'd give a little of my health background before I pose my question.
I have had orthostatic hypotension since my teens, mine being the type that only causes me the weird pressure sensation in my head & neck due to a short episode of BP drop but I've never had syncope with it. Rarely when I was younger I would experience the drop-out of my vision for just a couple seconds. In-short, with my other symptoms of chronic fatigue, generalized anxiety etc..., I believe I'm likely in the POTS or MVPS category.
I also have Hashimoto's/hypothyroidism, which I understand to be a common finding in dysautonomic patients and in the past few months I was found deficient in 2 vitamins (E & D) and insufficient/low-normal in a third one (B12) - all being treated. I also believe due to my symptoms for many years of heart skips, flutters (less frequent than they used to be) and extreme sensitivity to caffiene, chocolate & alcohol, that I also have Mitral Valve Prolapse, even though my EKG was normal in 2001 (was having the symptoms alot then). I've not had an echocardiogram however, but don't really feel I need one to confirm MVP.
I just had EMG/Nerve Conduction studies done the past weeks due to worsening of carpal tunnel and tarsal tunnel type problems and general muscle weakness. Part of this is likely a result of my vitamin deficiencies but because of my tendency toward anxiety/worry I became neurotically concerned about having ALS, MS or some other terrible disease. I will say this in regard to that fear about my muscle weakness, that I've had it far too long to be caused by a neuromuscular motor neuron disease. I can remember posting on forums about my muscle weakness in 2004/2005 and these posts still exist out there somewhere. I actually remember as far back as 2002 having these same type muscle symptoms and my thyroid treatment never resolved them, leading me to think I had comorbic CFS to my hypothyroidism. I have never seen any atrophy in my muscles.
Now that I've bored you with that I'll get to my questions:
Do any of you ever experience adrenaline surges when stretching your muscles?
Mine occur when I first wake, mornings and I have that urge to stretch them and this sets-off an adrenaline reaction.
Do any of you experience muscle weakness specifically, with your dysautonomic conditions (rather than fatigue alone)?
I'm sure I'll have more questions but thank you in-advance for your answer!
Glad that you came over to our Forum to check it out and hopefully get some answers.
As far as your 3rd question goes......I DO have muscle weakness also. Don't know if my NCS attributes to it along w/ my MS. (Yes, I have MS). AND my muscles also get fatigued as well as fatigue easily (hope that makes sense).
So Yes for both of them for me.
I also have MVP w/ Moderate Regurgitation. Why not go ahead and have the Echo done? An EKG will not necessarily pick up on this. It will only pick up on the Tachy or Arrithmia's (sp). The Echo will visibly show if the Mitral Valve is Floppy or not and/or has regurgitation. Worth the test...In my opinion. That way they can keep track through the years on if it progressivly gets worse or not (leaking wise).
So are you actually dx w/ what?? As far as the AD goes? What meds are you on for it?
No, I haven't been diagnosed as yet, only the past diagnoses of Hashimoto's thyroiditis w/hypothyroidism and the vitamin deficiencies. Otherwise my only other dx was non-alcoholic fatty liver (I'm a moderately overweight mid-age male). One reason I feel strongly that dysautonomia has a part in this, is the fact of my having the orthostatic hypotension (since teens), which though not severe, seems to have roots in my fatigue. I may yet request an echo - my mother has MVP with mild regurg - she is now age-74.
I have considered MS as a possibility for my muscle fatigue however, I had a clear MRI less than 3 years ago and my neuro-doc re-reviewed it when I went to him this past couple months or so and also said it was clear. When I had the MRI done, I had same symptoms I have now with exception of my having a bit more sensory type symptoms now - occassional pin *****, hot needle type pains that are not frequent. I do realize that MRI is not always conclusive and sometimes they need a spinal fluid sample.
I posted on the neuro forums as well, in fact they may be sick of me there by now, as I've asked 3 questions in a fairly short space of time.
Like many people, I feared motor neuron disease as well however, I've searched a great deal on these and they are far more rapidly progressing than are my symptoms. My muscle fatiguability goes back a good 7 years (more likely 10 years) and I've yet to see any hint of atrophy in any muscles. If mine were an MND, it would have to be the slowest progressing on record. My neuro suggests "axonal perhiperal neuropathy" but says it is not an absolute. This of course would be a better dx than would something more severe.
tonyad, do you have sensory symptoms with your MS or dysaut? (thinks like tingling, burning or stabbing sensations) and... Do you have any carpal or tarsal tunnel with these?
Also: I'm sorry to hear of your MS dx however, I know from search in regard to it, that most people deal well with it and it doesn't effect life expectancy. I wish the best for you in regard to your dx's!
When it rains, it pours, doesn't it? I'm sorry for all of your troubles! I've been through the whole gamut of tests (MRI to check for MS, Xrays to check for tumors, EKG and echo and a 24-hour heart monitor, scores and scores of blood tests) and have ruled out a lot of issues as well. I have high cortisol levels (which would suggest an adrenal gland issue but docs didn't pursue that). The test that finally sealed the deal for me was a tilt-table. I was diagnosed with Neurocardiogenic Syncope.
I find that when I get emotional or if I've strained my body (walking up stairs, for example) my muscles get very weak. I describe it to my fiance as my limbs turning to jello. This does fit in with adrenal issues and dysautonomia because your body can't quite figure out the "fight or flight" response.
A family friend wrote a book which was JUST released call All In My Mind, Overcoming Adrenal Fatigue, Chronic Fatigue & Fibromyalgia. (All of these are "mythical" conditions that are very hard to get a diagnosis for.) The book is about her journey to a diagnosis and tips for getting there. She also has a blog www.jenbusch.com . I met her when I was 19 and I had never heard of adrenal fatigue before. She was the first person I met who could actually relate to me. (What a relief!) It is interesting how interrelated all these conditions are...
I think my muscle weakness stems from being out of shape. I do get adrenaline and noradrenaline surges, as demonstrated by various tests with a high level here and a different high level there. When I get up in the night to use the facility or early in the morning, this is when I get a lot of my worst tachycardia from my POTS. Have you ever been tested for your catecholamines early in the AM? Have they tested any other endocrine hormones besides thyroid? Have they ever ruled out a pituitary tumor? With your vit. D problem, what is your calcium level like and have they ever done bone density testing?
Thank you for relating that - I read it with much interest! Your desscription of the muscle weakness (jello legs) is exactly how I described it to my neurologist and I do believe there have been times that emotions-alone have triggered some muscle shakiness...interesting!
In regard to CFS, a past doctor I was attended by, who resigned his practice because of a back problem, told me that he felt I had CFS and my wife was with me at the visit when he said this. Unfortunately, as you well know, CFS is still not recognized by many doctors, nor is the connection of CFS to dysautonomia, even with medical research studies finding orthostatic hypotension to be a common feature of it.
I will be checking out the jenbush.com blog - thank you for the link.
My catecholamines haven't been tested and has yet to be suggested. The doctors in my area may to even know what these are. That may sound like a knock toward them but sadly true. I won't go to much into my doctor experiences but will just say I've had to correct so many things they did incorrectly such as ordering the wrong tests to monitor my thyroid hormone therapy. A doctor ordered "T3 Uptake" to test my T3 thyroid hormone level but the test is not a measure of that and she was going to give me a dose increase of my thyroid hormone but upon my demanding the correct tests, it revealed that I'm already terribly over-dosed on my thyroid hormone (as confirmed by Dr. Lupo at the MedHelp thyroid forum). That suggested dose increase might have literally done me in.
I do love my neurologist however, although he has no clue what level of vitamin E replacement I am supposed to be on, so is letting me take whatever I think is right. My vitamin E level was @ "0.4" (less than a half point) in a range of 3.0 to 16.0, which can account-for some, if not all of my neuro type problems. Very few doctors know about symptoms or complications of E-deficiency because it is rare. --- Sorry I got off on those subjects!
Yes, like EmilyKirsten, I have longstanding adrenal fatigue and mine was found through repeated saliva tests and one 24 hour urinary one but I passed an ACTH stim test, so the low-normal (sometimes flagged low) adrenal cortisol levels were pronounced "untreatable". The ACTH Stim test also shows that the pituitary responded correctly to the ACTH with releasing CRH, to stimulate cortisol release from my adrenals. My TSH (another pituitary horone) responds-well to a lowering or elevation of my thyroid hormones, so this-too was indicative of normal pituitary function. I think they also tested my natural ACTH levels and this too was normal.
They did test my calcium, along with vit D level and it was good range, so they supplemented me with D and not calcium but this-too I believe to be basically a learn-as-you-practice thing with my doctor because she was not aware that D-deciciency could cause muscle weakness or nervous system symptoms. She did know that B12 could do this, which I was also found low-normal (insufficient) in. I was hoping with the months of treatment for these 3 vit deficiencies, that I would have seen more improvement but much of the lingering of symptoms may be related to my comorbid dysautonomia - which BTW, my past doctors had never heard of, nor has my current one heard of it. I've yet to ask my neurologist but I would suspect that he does.
Sorry to rattle - sometimes I lose track of how long I'm posting.
I have some weakness in one leg related to a former knee injury from a trip and fall. A neurologist thought I had "reflex sympathetic dystrophy syndrome" but my orthopedist and I didn't want to accept that and I had arthroscopic surgery, which brought a lot of improvement in the pain, but still not quite normal in that leg.
The jello feeling I get myself came after a hysterectomy and is followed by a hot flash. Have you not gotten bone density testing? My doctor told me to increase vitamin D because of osteopenia revealed in a bone density testing.
Also, have you gotten your potassium tested? Low potassium can cause muscle weakness.
No bone density test but I will ask for one at my next visit at the neuro or my regular GP. I did have upper body Xrays the past couple years, one due to asthma and the other by a chiropractor because of cervical spine pain I used to have that got better. Both showed good bone structure. A side-fact - my asthma is better than it was some months ago, in fact I only have mild flares of it.
My potassium tested normal, although past tests show that mine fluctuates to lowest-normal at times, so I'm eating more potassium fruits.
Also a side fact - I had testosterone checked and mine was at mid-range or slightly above - good for a man in his late forties. My DHEA is good as well.
Like MANY PEOPLE (I know this from forum searches), I feared I might have a motor neuron disease (MND) like ALS and some fear about the MS possibility as well. After much online search on the best med-sources, I realized that muscle weakness that goes back as many years as mine does (at least 7 and more likely 10 years) is far too slow a progression to be an MND (I have no muscle atrophy) but would be more possible for MS or a polyneuropathy.
My muscle weakness is body-wide (not severe and no foot drop or other severe signs), which is also not typical of an MND. I almost feel bad because I posted on the MedHelp neuro forum about this concern and the Dr. there thought I was saying that my neuro was concerned about an MND but it was rather I who brought it up to my neuro who stated at least twice that my condition is indicative of an axonal peripheral neuropathy. I was a little blunt with the forum Dr. but he somehow got the impression that my Dr. was trying to rule an MND out, which is not the case. I was actually asking an opinion about my EMG test but feel there was a misunderstanding. No big deal, they are extremely busy guys and most donate their time here.
I also realized there is a kind of fear mongering (mostly unintentional) directed at people fearing terminal diseases and I've thought about making a post in this regard - may do so right now, because I feel people posting out of fear need replies that are in-perspective, otherwise their fears become more deeply imbedded. This is not fair to them and while they do need to know about the more serious illnesses, they also need to know how possible these are in comparison to the more common diagnoses.
I'm an information sort of a guy and that's part of what these forums are for. I'm grateful they are available.
Another thought about muscle weakness- I know protein is essential for muscles- do you get plenty of this in your diet and could there be an absorption issue for you with protein, not just the vitamins you mention? If you are a meat and potatoes type of guy, potatoes are a good source of potassium as well!
I know a person can tend to fear the scary things and they'll want to get them ruled out so then they can focus on the less serious but still troublesome problems that might be causing their symptoms. I notice though too there is a trend of people letting their lack of insurance play into their decision and I imagine at times, it's to their detriment that they are waiting around instead of going in. They look for answers here when they really need to be going in right away to an ER.
My blood protein level was checked and was in the upper half of the normal range. Yes, absorption problems are strong possibility and in some cases they can determine a cause or it's "idiopathic" as they also say. I had only a "trace" of protein in my urine but my regular doc who had it tested said that trace amounts are commonly found and is only of concern if the amount is significant. She also said that if a person has eaten lots of meat or has exercised within 48 hours before a urine test, trace protien and trace red blood cells can be found in the urine. I'm sure that one will still be retested down the road.
Some people also have fat malabsoroption but with my being moderately overweight and not having diarrhea problems, it's not likely to be related to fat metabolism. Still, I asked for a test to detect AMA (anti-mitochonrial antibodies) because these can attack the bile duct in the liver, causing fat malabsorption and deficiencies of fat-soluble vitamins but I was negative thankfully (no biliary cirrhosis).
For a long time, I didn't have insurance and was self-pay, including things like MRI I had done in 2007 but fortunately I was able to get BlueCross within months of my developing the peripheral neuropathy (only hints of it before that and I didn't recognize it as PN).
I believe I have seen you on the thyroid forum which is a new forum for me. We do have some similar problems.
I have Hashimoto's as well as orthostatic hypotension diagnosed now as pure autonomic failure and I also have long standing allergies for which I take meds and get allergy shots. I wanted to say that I too have had those pins and needles pains. I had them most when I was first diagnosed with PAF and before I started taking supplements which include Good Pastures Blue Ice Royal, a rather interestingly derived cod liver oil/butter type capsule that includes a lot of fat doluble vitamens including E and A. It supposedly has all the stuff used to make the myelin sheaths around nerve fibers are so it was explained ot me by a doctor. Since getting started on those supplements I have fewer episodes of the pins and needles thing. I also at times feel very jello tired fatigued. This happens more in the afternoons and on warm days and most certainly when my BP is lower orwhen I have been standing a longer time. I have found for me that carbs cause this most readily and have gravitated to starting my day with a very small meal...more like a snack of protein. I do much better with proteins and even half a sandwich, due to the bread I think, can lower my BP.
I also think I have upper airway resistance syndrome and have started avoiding sleeping on my back. I am actually dreaming again and sleeping much better. This after years of not dreaming. There are some good articles on MedHelp by a doctor about this syndrome which many sleep centers aren't aware of as yet. It is similar to Sleep Apnea but not as severe in sympthoms but should be treated in a similar way. Allergies can pre-dispose to that one as well as deviated septum. I have both.
Since I haven't had a lot of testing as yet I can't speak to some things but like you I have had periodic low potassium. One of my doctors thinks my periodic days with skipped heartbeats are due to this. I am still on a small amt of diovan which is potassium sparing and when I go off this last little bit I will wait two weeks for it to clear from my system then get another potassium test. I should explain I came to have hypotension but also had been treated for hypertension in the years previous. I have had to wean off all my three hypertensive meds and am on one very small amt. of diovan now...20 mg. At one time I was on 160 BID and on two other meds.
I am also taking high stress B vitamens and some glandular adrenal from cattle as one of my doctors thinks I may have adrenal fatigue. According to him, only the worst cases show up on testing. I must say that I am noticing after three months of taking these that I am having some better endurance. I also am tolerating temperature changes much better.
I am not sure if anything here is helpful to you. I am learning from others here a lot and from my doctors suggestions. Have you had a tilt test done as that is pretty much a good test for the orthostatic hypotension. I did have an echo done on my heart and it was ok. My MRI showed I had several small strokes at some time...most likely from my high familial cholesterol. We are working at lowering those numbers.
I can't take statins so I am on a regimen of high niacin. I take 325 mg. of aspirin 1 hour before bedtime then at bedtime I take 1500 mg. of niacin. This under a doctors superivision. The aspirin keeps me from having a reaction to the niacin so I have no flushing. My already good HDL went quite a bit higher...95. My ok triglycerides went lower to 75. I have read an excellent journal article that equates your triglyceride to HDL ratio with autonomic dysfunction. Please don't take this statement wrong. I don't mean to imply that one thing alone causes autonomic dysfunction because my belief is that many things go wrong and it snowballs into it. With the niacin my ratio has changed for the better and I am in the 2nd quadrant now instead of the fourth. My actual high total cholesterol and LDL are still sky high but we are going to discuss ways to lower it at my next visit. I also submitted a question to Dr. Lupo on the recent chat on the thyroid forum and he confirmed that if your thyroid is not adjusted properly, low thyroid can raise your LDL by not allowing clearance in your liver. For that reason alone I will suggest my thyroid levels be checked again. Months before my hypotension really hit the fan, my thyroid meds had been lowered. In addition the LDL is calculated and if the total cholesterol is high and the HDL abnormally high as well another journal article points to the fact the calculated LDL can appear abnormally high so I will ask for a measurement of LDL as well.
I also suspect I may have thyroid nodules which might contribute to the upper airway resistance and problems with sleep so I hope I can get an ultrasound as well as that has never been done and I have had Hashimoto's for over 4 decades. Obviously sleep problems can exacerbate many other things.
I think there are so many variables in all this that I am not sure what all contributes to everything. I just read as much as I can and learn from others here and luckily have two doctors who are easy to work with.
I hope you find some answers soon. Marie
Thank you for the detailed info, I'm always interested in other patient's symptom descriptions. It does sound like your stuggles are similar to mine in many ways.
I haven't had tilt table test but know for a fact my dysautonomia would be clearly revealed by one. I do have disrupted sleep patterns that are typical of CFS and Fibro patients, going back many years. I wake repeatedly through the night although when I am asleep for an hour or more at each interval, it is solid sleep, with dreaming.
I slowly developed asthma as well (mild persistent - only rarely have to use albuterol), which may have aspects of upper airway resistance because when I lay flat on my back - supine, I immediately feel some tightness in my lungs. This is however not uncommon with typical asthma, especially those who also have GERD as I do. It did concern me at first however because I wanted to make sure there was no heart involvement (enlargement) in my asthma, so had my doctor order me a "BNP" blood test (B-type Natriuretic Peptide), which is very accurate for detecting congestive heart and mine result was "4". I was very happy to see that because readings of 100 indicate mild heart failure, those at from 300 to 600 represent moderate and those at 900 and above - severe.
I also had a chest/lung xray done (two views) and my lung tissue is health, heart size is normal with no acute or chronic cardiopulminary findings.
I've had the acid reflux for many years but within months of my adult asthma fully manifesting (had it as a child), I had several episodes of choking on stomach acid, which made me wheeze afterward. Medical studies show that 75% of asthma patients have GERD and that GERD is a direct cause of asthma in some people. Vitamin E and D deficiency are contributors to asthma as well and I have both deficiencies (now treated). Still, all-in-all my asthma is mild - never any severe episodes.
Myopathy, weakness in the body and muscles is commonly a metabolic thing and usually no treatment for it in many cases but lifestyle changes can help a lot. This is what I have been finding info on, just as of this week. Other non-MedHelp forums I've read on have people putting a bit of a scare in others with body weakness, however, there are huge numbers of causes other than terminal illnesses, that can do you in, in just a couple of few years (still necessary to rule these out). When you already have conditions in your body like we have, this can already pretty much explain any muscle or body weakness and in many cases people simply have to live with it and live healthy as possible to counter-act it.
My peripheral neuropathy symptoms can have my autoimmune thyroid as a cause and my D, E deficiencies and B12 insufficiency. Replacing these usually helps a lot but longterm deficiencies can leave some permanent nerve damage, especially in regard to E (mine was at "0.4" in a range of 3.0 to 15.8).
Oh my, I posted much longer than intended!
Thanks again for sharing your health history - I read it with interest.
I know this is an old thread but it often is the case when you google something old threads which are relevant appear.
I am awaiting a diagnosis of Ehler's Danlos Syndrome (a connective tissue disorder). I have always had issues with my spine and joints but nothing was ever diagnosed. Otherwise reasonably healthy until I got the Epstein Barr Virus 30 years ago which left me with ME.
Seven years ago the autonomic dysfunction worsened and I now have Postural Orthostatic Tachycardia Syndrome (POTS) and Erythromelalgia (small fibre neuropathy). I subsequently found out that having EDS predisposed me to getting ME. I am now waiting for the POTS and EDS to be properly diagnosed and treated (maybe even the EM, too).
I have recently been found to be deficient in vitamin D and I am now taking 10000iu per day.
I have muscle weakness from the nerve damage. Nerves control muscles as well as the circulatory system. If I exert myself I have severe muscle pain and weakness for days afterwards. I love to stretch my muscles especially in my legs and it may be that doing this is affecting the BP and HR as you would be pushing the blood upwards.
I have numerous other- connected health problems but they are definitely all linked.
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