hi, Jules. Stop me if you're heard these :)
test bands: what about the one microbe that's most often associated with Lyme? babesiosis... but then, what can you do about it?
sometimes migraines get cured by Mg
Mg as per muscles + nerves: Ca rushes in to a nerve or muscle cell and Mg rushes out, creating pulse conduction. Similarly Na and K are sort of like opposites. How does that relate? I don't know. But do you have any unusual dietary habits, like vegetarian? High sugar diet (which causes mineral excretion)?
pineal cyst: I think often times a person can somehow just "know" what's wrong with them. That's why I asked about your intuitive perception. Otherwise I know very little about it. What is the width x length of yours?
How about milk or legume allergy? If you have gut permeability because of that, then lots of other molecules can cross the barrier and then create problems.
lecithin granules might have some minor benefit. Sort of nourishment for the nerve coverings.
Aquatic ape theory would infer that ancient humans absorbed Mg through the skin from sea water. IOW, Mg is a big requirement which most people are truly short of in modern days.
stroke: well, what could dispose someone of your age to a lacunar infarction? Could you have a Patent Foramen Ovale? That's all I can think of. Ir do you have varicose veins, indicating hypercoagulability?
Also re stroke: damage would get better or stay the same. Does yours get worse? That could argue against *a* stroke, or in favor of repeat events. Do you ever feel TIAs?
"although I can't figure out how that would cause damage to my left face and the rest of my left side...while the nerve damage is on the right?" I'd guess in your complex mystery case, we can abandon Lloyd Morgan's Canon - and say they do not have the same cause. Maybe.
"If a simple chest x-ray can generally rule out sarcoidosis (90% of people with the disease have abnormal chest x-rays), I'd be happy to have it done." You might be in the other 10%. but yes sarcoidosis is seeming unlikely.
Me? I'm on this group because my father had lymphoma some years ago. An aggressive type. So one day I dropped in to try and help for a short while. That was last autumn :)
Well, you're very brave to keep persevering. What about exercise? What if you forced yourself to exercise, then pay the price afterwards in being wiped out, then recover after days and repeat -- but over time this punishing work leads to improvement? That's one therapy you can control, anyway.
My total guess at this moment would be autoimmunity or virus. Or a spirochete because they have that hiding ability, too. Your Fx goes toward autoimmunity. I'd keep in mind maybe trying to eat strict Paleo, and taking lots of arginine as an anti-inflammatory, plus turmeric, ginger etc. That's going to the far side, but you have tried allopathic approaches.
Oh, or you might try porcine Armour (actually it's replacements, since Armour seems gone these days) for the hypoT. Or cytomel (T3).
Did you travel anyplace exotic before things went bad?
Nothing seems to be pointing to lymphoma. E.g. they are "reactive"
Since your docs haven't diagnosed the mystery problem, I'd look at possible food or other allergies. Or maybe Lyme. Or autoimmunity.
If you have willpower, you can drop the foods that are known to most commonly give sensitivity problems: gluten containing wheat, rye, etc, and dairy.
I also suppose you're been to hypothyroid groups and heard many who say that treatment should be guided by symptoms, not blood tests.
have you tried magnesium? that relates to hypoT and to cardiac conductivity, and also some of the general symptoms you have
Are you making sure to keep well watered? (IOW, that your tachycardia is not due to dehydration.)
Thanks for your response. I've actually tried magnesium and I've been drinking more water as of late given my ENT's advice that I need to keep my vocal cords well-hydrated. I've been tested for quite a few autoimmune diseases during the past two years, all negative (RA, Celiac's, lupus, etc.). I have allergies but I've been managing those for the past few years with Clarinex and a nasal spray, and several Lyme tests have indicated I have spirochete antibodies (41 kD band) but no other active bands--so no Lyme disease. Perhaps I'll lessen my intake of processed flour, wheat, and dairy products to see if this helps.
I'm not really worried about the MRI results, but I just assumed that reactive meant "enlarged", and I'm still not sure why at least one of those nodes has been enlarged for such a long time. I guess this is just another annoying symptom to add to the mystery mix!
hi, are you aware of the giant controversy surrounding Lyme diagnosis?
Also, IMO "processed" is an overused word these days. In your case, the lectins that are found in whole grain might be a problem, and so white flour can be better on that score. I'm just pointing out the utter complexity of things healthwise :)
Trial and error has some chance of revealing clues.
Think of 'reactive' insofar as the node is doing its job - whether there is a real invader to fight (bacteria, virus, fungus, parasite), or whether it's a false alarm (as in allergy or autoimmunity). So cancer would not be included in that - and the node would look differently, whether through a microscope or even usually on an MRI.
In the spirit of knowing there are mysteries, here's one suggestion: try eliminating all the supposedly 'good' grain oils like canola. At the same time,. take lots of fish oil. See if your knees improve as a first sign. Why? The O3s are anti-inflammatory, the O6s in grain are pro-inflammatory.
Speaking of inflammation, have you had ESD or hsCRP tests?
Yes, I've heard a lot of different opinions on Lyme disease from various doctors, but I figure if I all of these issues were caused by Lyme, I would probably have fairly severe neurological deficits after 2.5 years. I have been bitten by ticks in the past, though none of them deer ticks. Both my mother and brother have had Lyme, but I went to college in upstate NY (and subsequently became sick toward the end of college) and I wasn't outside in tall grass or under trees all that much--plus, it's like winter up there most of the time. I'm not sure if there's anything else I can do with regards to Lyme except see a Lyme specialist, perhaps?
In my reading, I've learned that while reactive nodes are much more likely to crop up as a result of infection, the possibility that there is a malignancy cannot definitively be ruled out without a biopsy. The only reason I was considering them as a potential concern was due to the fact that one of them has been enlarged for nearly two years now, and I have trouble swallowing and nerve damage in my throat (that cannot be attributed to a brain lesion). I'm seeing my ENT this Tuesday, so I'm just going to wait and see if he feels something should be done; otherwise, I'm not going to worry about them.
I'll consider your ideas and try to work some of them into my diet. I do take cod liver oil tablets sometimes, and I'm trying to keep up on the magnesium regime. My parents want me to have my magnesium levels checked, regardless, so I may ask one of my doctors to order this test.
I've never had ESD measured (what is this, exactly?), but I have had CRP done...not hsCRP, though. Is there any reason I should request hsCRP if my CRP was perfectly normal despite having RVOT VT?
Thanks for your continued help!
I knew somebody who went to a Lyme center in Manhattan. It was disappointing. AFAIK the only way to know for sure if active Lyme is present is to have the multiweek IV antibiotics and see if you get better. Plus, there could be a lymphocytic condition where the Lyme is gone but the immune system continues to wreak damage.
But your point about lack of general neural effects seems to be a good one.
And btw, also AFAIK the deer tick is the one found on the deer mouse, which can be indoors and that is the primary vector for Lyme, especially in winter - not actual deer in the woods :) From deer->mouse->human
Some nodes just don't go down, possibly being fibrotic.
Magnesium is mostly intracellular so AFAIK a simple serum test is fairly useless. You'd need the one that tests the Mg in RBCs.
"Erythrocyte Sedimentation Rate" is an earlier, cheaper way to measure inflammation. A normal CRP measures only in higher ranges - say 5 and up as a guess. But the high-sensitivity version of the test can detect lower levels.
But you just said something that stands out. Having the VT seemed out of place anyway. But RVOT VT? Did you know that sarcoidosis mimics RVOT VT? And look at all the other symptoms that sarcoidosis can explain, including the nodes. But OTOH you haven't mentioned shortness of breath. Even so, how's your calcium level?
I suppose it's possible I was bitten by a deer tick at some point--they are a lot harder to see. It would really suck if I had Lyme disease all this time and was testing negative for it. After I was bitten by a tick in the fall of 2008, I was put on a 2 week cycle of Doxycycline, but that didn't seem to do anything for me (and I haven't been bitten by a tick since then, at least not that I'm aware of).
I'm going to look into the magnesium test and request that I have one done when I see my GP next...hopefully, they'll willingly oblige! I might also ask my cardiologists about hsCRP; I didn't even know that test existed--thanks!
Ohhhh you said "ESD" so I wasn't sure what that meant. I've definitely had my ESR measured a few times (3 - 4). When I first became ill and had it measured twice in 2008, it was around 1 - 2. More recently, I had it measured twice, and it was 6. Still not a concern, but the increase is interesting.
I did recently learn that sarcoidosis mimics RVOT VT, and I actually plan on asking my cardiologist about this when I see him on Thursday for another stress test (they're controlling my arrhythmia via medication at the moment, and they want to be sure the medication actually works under stress). When I initially asked my cardiologists what could cause RVOT VT, they said it was ONLY congenital. Hah! I'm not convinced I have sarcoidosis, though...since my chest x-ray a little over a year ago was clean, I don't have any dermatological or optical symptoms, no chest pain or coughing up blood, and no cough. Still, I'm going to look into it, just in case.
I feel as though my illness is primarily neurological due to some of my neurological symptoms (essential temor, weakness/decreased sensitivity on left side, mild paralysis of upward gaze, endocrine dysfunction), but the only visible abnormality is a pineal cyst and some venous malformations. And most doctors choose to ignore the pineal cyst.
These lymph nodes are just another weird symptom to add to the mix, but I will let you know what my ENT decides to do about them in a few days!
there is a PT group formed whose aim is to say: "we have Lyme, though your testing says we don't - so change your methodology". There are 2 women in a video and they've been on various tv shows. They keep lists of "Lyme friendly" docs, too. Who's right? I don't know or advocate, I'm just mentioning.
Any talk of bands on ELISA/Western Blot alway made me fall asleep :) But I do know there is controversy there. Also that one can never know if the Lyme is active or only AB traces from the past, for sure. So I don't follow your sentence on bands, because my mind tunes out, sorry :)
Btw, most who get the Lyme bite never know it, and only a minor percentage get the classic bulls eye.
If you take Mg, there is enough to consider on which kind. I have Mg Glycinate - better absorption and less side effects. Or maybe epsom salt baths. Have you ever heard of the 'aquatic ape' theory?
hs-CRP was made famous in the also famous JUPITER study, using a statin to conteract inflammation and thereby reduce cardiac events - aside from cholesterol lowering effects. Not that I'd use statins, but it's very famous.
Oops, sorry - I did mistakenly say 'ESD' (ESR & SED was in my head). I did think it odd you asked about it, since you seem very sharp and on top of everything. My fault... as my typing degrades... I always did hate typing, it seems to get in the way of thinking.
As far as sarcoidosis, you don't fit the usual. But what if you have an atypical case? Which, lets face it: you either have some super rare condition or you have an atypical case of something that's known by its typical signs. As you know, in evidence based medicine, if you're not average then you have a difficult time.
Or, a virus - kings of mysterious conditions.
As far as neurological: what if you tried lecithin granules and see if that changes anything? The phosphatidylcholine might give some benefit - this relates especially to the phospholipids of the myelin sheath. Also, there is serine in lecithin.
Or, getting farther afield... did you know that fasting has been used medically to treat epilepsy? The beta-hydroxybutyrate that gets generated during ketosis somehow aids nerves.
Do you have any intuitive sense about the pineal gland?
I assume your Ca is okay then. Which tends against the sarcoidosis.
I also assume you've considered and ruled out MS.
Any autoimmunity in your Fx?
Yes, by all means let me know any updates :)
Wow, thanks for your thorough response!
I've heard a lot about people having Lyme disease who continue to test negative for it...and it frightens me a little bit given the propensity of all of my doctors to accept that a person has a condition/disease only if their bloodwork and tests are positive for it. What about the small percentage of people who don't test positive in the bloodwork/tests but still have a disease (consider Wilson's disease--copper levels, lupus--ANA level, etc.)? I used this retort on my GP one time when she told me that my bloodwork was largely normal, so she thought my symptoms were in my head, and she didn't know what to say.
Talking about bands bores me, too, so I'll re-summarize: I had one positive band out of all the bands they tested me for (like 10 or 11?), meaning no Lyme disease, but also meaning that I did test positive for spirochete antibodies (this could happen with other diseases having similar causal agents, like syphilis).
My neurological symptoms are baffling, especially since my neurologist will only commit to a diagnosis of "migraines" and an "essential tremor". He's confused about why I have nerve damage on the right side of my neck that's causing difficulty with swallowing, yet decreased sensation and strength on the left side of my body. Not to mention mild paralysis of the upward gaze and now these congenital (probably) venous malformations.
If I had to guess...and it's an educated guess based upon my background and readings...I'd say the large pineal cyst is causing a great deal of my symptoms, if not all of them--that's my intuition. Something that large doesn't belong in such a small space in the brain...there is no extra space in there! It may even be causing the thyroid dysfunction, although I have been hypothyroid for much longer than I've experienced the trouble in my throat, tremor, and vision problems. It's just a shame I can't find a neurologist or doctor who is willing to consider the pineal cyst as the culprit. Although not diagnosed, I also have hypoglossal nerve damage since my tongue deviates to the right when I stick it out.
Autoimmune disease definitely runs in my family...my mom is starting to develop thyroid disease (looks like Hashimoto's due to her slightly elevated thyroid antibody results), she has arthritis (we don't know if it's RA), and she has terrible environmental allergies, as do my siblings and I. Some of my maternal aunts have thyroid disease, and my paternal grandfather had diabetes, which my father looks like he's developing, too.
My MRI is clean for MS, so I don't think my neurologist is worried about this. I was a little concerned about Parkinson's for awhile, but I don't think it's that...if anything, I think it's more likely I had a minor stroke, although I can't figure out how that would cause damage to my left face and the rest of my left side...while the nerve damage is on the right?
I'll have to look into lecithin granules and the aquatic ape theory; I'm not familiar with either of those, but I do plan on asking my cardiologist about magnesium this week.
Oh, my calcium levels were normal when they were measured a few times from 2008 - 2009, so it's probably unlikely that I have sarcoidosis...but I might ask my cardiologist about this, too, before assuming the RVOT VT is solely congenital. If a simple chest x-ray can generally rule out sarcoidosis (90% of people with the disease have abnormal chest x-rays), I'd be happy to have it done.
I just wish my results were average and I could finally understand why I feel so ill! But alas, it looks like that ship has long since set sail.....
Are you ill at all yourself, or do you just enjoy trolling the forums and helping people out (like I try to do when I can)?
I saw my ENT today, and he said he'd like to do an FNA of the lymph node that's been swollen for a long time, as well as an x-ray swallowing study. Sounds like fun!
I don't have any unusual dietary habits; I've been eating fairly well ever since graduating from college 2 years ago. I do know the importance of Na and K in voltage-gated channels and muscle cell action potentials, as well as Ca and Mg's roles--so I'll keep taking the magnesium supplements and double-check this with my cardiologists on Thursday.
I've been exercising a little more each week (played tennis for an hour with my sister this past weekend), but trying not to do anything too crazy since my cardiologists seemed to really caution against any exertion until they know the Lopressor is actually working. I definitely think it'd be wise to incorporate more exercise into my schedule. But I wanted to make sure the abnormal heartbeats whenever I exercised weren't a problem...and of course, it turns out that they are.
Speaking of which, my cardiologists already looked into PFO--the echo I had done looked clean. When I do have a TIA, oh boy do I feel it. It's the strangest thing in the world (even more odd than accidentally overdosing on niacin, which I did today!...now that's a funny story). Half of my tongue will start to tingle, almost as though it's falling asleep. My head will feel simultaneously heavy and light, accompanied with some dizziness. Half of my body will feel warm, while the other half will feel cold. I feel generalized weakness on the left side, accompanied by some tingling sensation. I am able to walk, although not as easily as usual. My left pupil becomes 'blown', the left side of my face droops slightly due to the feeling of muscle numbness and weakness on that side, and I feel slightly confused about things, yet focused. Occasionally, there is a sharp pain in my head that disappears almost as suddenly as it arises. I don't have any issues with speech during this time, fortunately, and all the symptoms subside in about 30 minutes. These symptoms vary slightly from episode to episode, but the aforementioned ones (except for pain in my head) tend to always occur. It's frightening, but I've learned to pay attention and be sure that the symptoms do subside...if not, I'd head to the hospital in case it was an actual stroke.
Ironically, I've tried turmeric and that didn't do anything for me. I still take it every now and then, because I know it helps, in general. I eat lots of ginger whenever I go out for sushi, but I haven't made a habit out of it. =)
I noticed the "new" symptoms (throat discomfort, difficulty swallowing, tremor, really bad headaches, weakness on left side, swollen/painful joints) crop up around March/April of 2008. The "old" symptoms (fatigue, vision problems, headaches, dry skin, brittle nails) had been around for quite some time--particularly the fatigue and the headaches. In January 2008, oddly enough, I visited California and Nevada for the first time, for about 10 days.
I'm in agreement with you in thinking that it's autoimmune. It just seems so probable that I can't ignore it, yet all of the tests are coming back "ok". I don't want to rule out other possibilities, though, since the last time I had bloodwork done I was running a low RBC while my WBC count had risen from 5 or 6 in 2008 up to 8.5 in 2009 (I watched it increase over the course of a year and several CBCs). With autoimmune disease, WBC is usually on the lower side, if anything. It could definitely still be a virus...or even Lyme disease...I'm waiting to see if the lymph node FNA tells us anything, but I've learned not to bother holding my breath anymore.
I can't get my endocrinologist to measure anything other than TSH, so I'm wondering if my problem is in the conversion of T4 to T3, rather than in the production of T4. I guess I'll never know if I stick with this current endo!
I'm sorry to hear about your father, but I'm glad to hear that his illness has had a positive effect on you--and to the benefit of all of us on this site!
quick question, Jules: what came first, the beta blocker or the TIAs?
My brief neurological progression with regards to TIA:
August 26, 2008 -- Saw neurologist for first time; prescribed Topamax (25mg)
September 30, 2008 -- Saw neurologist for second time; prescribed propranolol (60mg ER) which I probably began taking sometime during the first week of October
--> I had already noted decreased sensation and muscle weakness on my left side prior to even taking Inderal--so a potential minor stroke or TIA might have already occurred in the past and left lasting damage
October 14, 2008 -- Went to ER for TIA; CT without contrast indicated a focal region of hypodensity within the central pons, later believed to be artifact due to a clean MRI on November 3, 2008
November 11, 2008 -- Visited neurologist for third time; propranolol increased to 80mg/day; also asked to take 81mg aspirin/day
December 8, 2008 -- Second TIA; no ER visit
February 24, 2009 -- Third TIA; CT without contrast done in ER was clear
October 14, 2009 -- Fourth TIA; no ER visit
Sometime in mid-2009 (maybe around April?) my Propranolol was increased to 120mg/day, which I've been taking ever since, until this cardiology issue arose a few weeks ago and I dropped it to start on Metaprolol
hi, I'd asked about the beta blocker because the homogeneity of your TIA symptoms (if it truly is TIA and not, say, seizures) would make me guess that they are not embolic, but rather have an intracranial origin right in one localized area.
Plus, it's now known that non-vasodilating Beta Blockers result in *more* MI, not less. So it was possible that your BBs were perhaps contributing to those putative CVAs. But, it seems a long shot that increased "central pressure" from the BBs can be causing CVAs -- but still possible. (Dr. Cockroft from UK is the guy doing that research.)
CT done in ER is mainly to check for current (and more deadly) hemorrhagic events, they won't show ischemic events until the affected tissue has become changed over 24-48 hours.
Speaking of which, if I were you I'd look up 'reperfusion injury' and start taking lots of anti-oxidants as insurance. (I.e., most damage is not from the initial ischemia but from the ROS that get created.)
But your CT and MRI would have shown accumulated infarcts from old CVAs, or maybe/probably microangiopathic conditions.
120 mg propranolol seems like a lot. Btw, that BB tends to hypoglycemia whereas atenolol etc go to hyperglycemia. Do you ever get spells with amnesia? (that could be hypoglycemia)
Do you have a home BP monitor so that you can immediately check your BP if you feel funny? (hypotensive episodes can be mistaken for TIA)
"until this cardiology issue arose a few weeks ago and I dropped it to start on Metaprolol"
Do you mean the RVOT is only that recent?
Btw, propranolol is not cardio-selective, but metoprolol is. You probably know that, I'm just tossing things in. Are you on the succinate instead of tartrate?
Was your Topamax for migraines?
Because this is something to consider... the proliferation of symptoms, as mentioned being seemingly against Ockham's Razor, could possibly be drug reactions. I suppose you have already researched all that. Did it come out as being plausible?
more later :)
I'm actually wondering if the TIAs are being caused by the two venous malformations I have in the left side of my brain. I've read that they can bleed (although this type only causes problems in 1/3 of people who have it) and when they do, it doesn't always show up on CT/MRI. They are also known to cause one-sided numbness or weakness and headaches. Fits me to a T!
Unfortunately, something small showed up on one CT scan in the ER, but I didn't get an MRI until 3 weeks later, at which point nothing showed up so they figured it was an artifact.
I'm pretty sure they're not seizures since I had an EEG done. What a weird test that was.
I've been getting a lot more headaches since stopping Propranolol, sadly, and I'm taking the tartrate version of Metaprolol. I used to have a home blood pressure monitor but I rarely used it, so I got rid of it. My blood pressure seemed ok during any episodes of VT I had during the cardiac stress test; the last stress test indicated that Metaprolol (50mg twice daily) seems to be working to prevent my arrhythmias. They also told me if it was sarcoidosis causing the arrhythmias, they would've seen damage on my echocardiograms and heard crackling sounds when listening to my lungs (usually it's advanced disease that would cause the RVOT VT).
I don't think I have any episodes of amnesia, but I do have a lot of memory problems...like taking a minute or two to come up with the right word to say, forgetting to bring with me something important that is due in class, or even not remembering what I ate yesterday without thinking about it really hard!
The RVOT isn't that recent...I've been feeling the arrhythmia for awhile now, but I can't pinpoint when it started, exactly. Maybe 1 - 1.5 years ago? I mentioned it briefly as a symptom to a few doctors, but none of them commented on it so I figured it wasn't worrisome. Ironically, it's turned out to be one of my more worrisome symptoms to this day! My problem is that I have so many symptoms over such a long period of time (2+ years) that I think doctors become overwhelmed and cut me off before I have a chance to finish remember all of my problems. I've even tried handing them a list of the progression of my symptoms and instead of reading it, they say, "Why don't YOU tell me what's been happening?" It's very frustrating since they only want to hear the first 30 seconds of "what's been happening".
Topamax was for migraines; I'm thinking about trying it again because I'm in a brain fog as it is and the only reason I dropped it was because it made me feel stupid. I don't think my cognitive function could get much worse at this point, anyway!
The drugs causing some symptoms is definitely plausible...but the fact that I've had the left-sided weakness/numbness, headaches, mild paralysis of upward gaze, essential tremor, joint swelling and pain, fatigue, throat problems, and other hypo symptoms (brittle nails, dry skin, issues with being too hot or too cold) before being on any drugs...well, that means there was definitely something going on and maybe the drugs have clouded it at this point. I really wish I had smarter doctors who would factor in all of these things like you are. =(
I'm hoping this neurosurgeon I'm seeing at the end of September is really helpful because I honestly feel my case is mainly neurological, and that the endocrinological symptoms are either separate and easily treatable, or caused by my neurological issue(s) (the hypothalamus and pituitary being affected by blood flow changes in my brain or something).
FNA - known for false negatives, but you never know
Though you do generally say IIRC that your problems mainly started 2 yrs ago - and that was also the start of that node. But still, the hypoT was really the earlier possible start of everything, right? Btw. do you have an idea of why you don't have the typical weight gain?
I deliberately try to maximize the niacin flush. I think it's healthy. Aspirin + full stomach are what others use to minimize it.
I guess the one-sidedness really points to TIA. Only ~ 1/5 of ischemic stroke produces pain.
I ran across a list of possible causes of stroke at your age: sickle cell anemia, protein C deficiency, protein S deficiency, arterial dissection, moyamoya syndrome, vasculitis, systemic lupus erythematosus, primary antiphospholipid syndrome, migraine, use of oral contraceptive pills and secondary to SAH vasospasm.
SAH = subarachnoid hemorrhage. But what if you have intracerebral vasospasm without hemorrhage? Then nothing would show on a scan. That could account for sudden onset and offset. In fact, that's my favorite theory for the moment :)
No to make light if it, because stroke seems to be the most pressing concern.
T4 to T3, IIRC a virus can interfere with conversion.
The active igredient in turmeric has its absorption increased greatly with piperine, i.e. black pepper.
Sooo... how can a virus or autoimmunity cause small artery spasms in the brain?
"two venous malformations I have in the left side of my brain" but how would that give problems on your left body side? Also, could that have sudden offset of symptoms (as can occur with plasminogen clot-dissolving, or a vasospasm relaxing)?
I'd guess the artifact explanation is the real one for that glitch.
Propranolol is prescribed for migraine prophylaxis, but not other BBs AFAIK. I wonder if different affinity for B1 B2 B3 receptors means anything useful. Also, FWIW the new generation of vasodilating BBs includes nebivolol.
I'd guess that a surgeon would be the kind most likely to comment cross-discipline. Plus, I get the sense that they feel competitive with medical doctors :)
And btw, I ran across a case study for Kikuchi Syndrome which has some parallels to you, *not* because you have it but because it's the kind of rare and poorly understood condition that I bet you have - and it's autoimmune:
Your symptoms sound exactly like what i had. its been mentioned before here and i would look into Kikuchi Disease. for 3 years i had been always tired and never knew why then it all blew up. i had painful swollen lymph nodes down the right side of my neck, fever, night sweats, skin rash, extreme fatigue, lack of concerntration, swollen and painful joints.
kikuchi disease can only be diagnosed through a lymph node biopsy (from which i have a permanent scar on my neck now) and there is no cure to it. they dont know what causes it either. however having my lymph nodes removed help as did taking 8 months off to sleep i also sought alternative medicine such as accupuncture for the painful joints which helped. no other CT scans or blood tests could diagnose kikuchi disease
i hope this helps. its at least something you can discuss with your GP.
So I saw my GI doctor who performed an upper GI endoscopy on me at the request of my ENT--basically to see if my acid reflux had caused any damage. The endoscopy results were good, but my GI doctor pointed out that my adenoids seem a bit large. This might be why I haven't been able to breathe through my nose for almost two years! I rarely have any mucus in there, but my actual nasal passages are almost swollen shut (this has never happened before and my allergies, which I've had since I was a kid, are generally under control with medication). Additionally, I've had several doctors tell me that my tonsils look large, including my allergist. Large adenoids and tonsils...left level 1B and bilateral level 2 enlarged lymph nodes...sub-clinical hypothyroidism...I guess this all points to some kind of infection in my throat? I just don't know if the nerve damage is related, or if it is just coincidental.
I had a swallowing study done last week, and the speech pathologist said that I definitely have some dysphagia with solid foods that is not normal for my age--probably from the nerve damage. She recommended that I take smaller bites and drink sips of water in between bites to minimize the effort it takes to chew and swallow...which I've kind of already been doing. She did tell me that my voice sounded good for someone with that much damage...I guess my body is doing a good job of compensating for its losses.
My fatigue is still bad, in addition to the neurological symptoms, but I'm trudging ahead. I apologize for my delayed response on here; I've been preparing for a long trip to Europe that I'll be leaving for in a week, so I've been home a lot (where there is veeeery slow and limited internet access). I just hope I can handle the trip while still feeling this way. But I figure I can't put my life on hold hoping that the illness will spontaneously resolve itself--I have to keep moving forward and pushing myself only as much as I can handle it (I don't want to make myself worse). It'd be nice if I could get off of the beta-blockers, though, because I think they are causing some of the fatigue and not allowing me to lose any weight (I didn't gain weight until I stopped taking Provigil, which actually made me feel awake, and started taking Propranolol for migraines back in September 2008).
I looked into Kikuchi disease, and the main reason I'd hesitate in saying that I have it is that my lymph nodes didn't show any necrosis, nor were they really enlarged. I also don't have a fever most of the time, but I have woken up in sweats in the middle of the night a number of times during the past two years. I have tested positive for EBV and Parvovirus B19. But the fact that through all of my research there are still diseases and conditions I haven't come across yet--like Kikuchi disease--means that there's probably a lot doctors haven't considered. It's not a comforting feeling. =(
The FNA of my submandibular "mass" (I guess it's just a lymph node? I haven't been able to clarify this with my ENT recently but this is what he wrote on my lab slip) was canceled because the surgeon reviewed my MRI and said that it seemed too small for FNA and it'd be difficult to do. I was really disappointed...because I was hopeful about this test. I think the results would've helped to clarify what's going on with me (even if it's just something vague like chronic fatigue syndrome) more so than a lot of the other tests I've been through recently, like the swallowing study. I mean, I know I have trouble swallowing, and I know there's nerve damage in my throat. So it makes sense that I have dysphagia...I didn't really need anyone to tell me that! But a biopsy or FNA of a swollen lymph node would likely show what current infection is present in my body. Instead, my ENT just ordered a repeat MRI for 6 months from now, in February.
ebird33--how much did accupuncture cost, and was it really worth it? My ENT recommended accupuncture and I would definitely try it, but insurance doesn't cover it unless I have been in chronic pain with no relief from pain medications. I'm just a poor graduate student, so I can't afford to pay for that out-of-pocket.
How did you get your doctor to order a lymph node biopsy? While I don't know if I need one now (I'll wait and see if the lymph nodes get any larger...annoying as that is), I may want to bring this up to my ENT in February if my nodes are still enlarged but not changing much.
Ken_PA--I'm not sure about how the anomalies in my brain are manifesting as my neurological problems, but I've noticed that the right side of my face is the one that droops slightly even though the left side of my body feels weak. I recently began doing some reading about right-brain strokes and I have to say that I do have a lot of the symptoms, especially the spatial issues, the sudden urge to cry for no reason over certain things (and I'm definitely not clinically depressed--I'm still a chipper person most of the time and love doing things I've always loved doing), short-term memory loss, difficulty recalling words, vision problems, spontaneous behavior that is more daring...I have slowly noticed all of these things over the past two years but have never really laid it all out on the table for my neurologist. Besides, he would never entertain the diagnosis of stroke because my MRI is clean (which doesn't mean there wasn't a stroke!). My CT scan showed a hypodense region in my central pons during one of my first ER visits when I was experience acute neurological symptoms, but it was ruled as artifact due to an MRI a month later being clear.
Thanks for the list of possible causes of stroke for my age--I'm going through them one-by-one. I think I want to really be aggressive with my neurologist at my next visit. He needs to start addressing my symptoms other than "headaches" or I'm going to have to find a new neurologist. I really think he needs to consider "stroke" as a potential diagnosis given the permanent neurological damage I have...I've had double vision for awhile, a tremor, nerve damage, random muscle twitches, headaches that worsened...stroke seems pretty likely to me...but I may also ask him if he has ruled out MS or ALS. He's scanned my brain and there are no obvious lesions, but he hasn't scanned my spinal cord...so neither of those can be ruled out yet. It'd just be highly unlikely for someone at my age to have either.
In any event, my headaches are back with a vengeance because I stopped Propranolol and started on Metoprolol.
Thank you both for your input and help. I really appreciate it since most of my doctors aren't that interested in my case and my family and friends don't understand what I'm going through...they're even getting sick of me being sick for so long!
I know I am commenting to a two year old post, but if you read this please get tested for BABESIOSIS. This is a co- infection of Lyme and needs to be treated with malaria medicine. Babesiosis causes night sweats, migraines.. basically all of your symptoms you listed. I myself am a sufferer of Lyme and I am understanding that the co- infections go misdiagnosed and untreated. Good luck.
I realize your post on here is quite old, however I plagued with all the same symptoms you have. My neurologists seems to not take it seriously. At times I have hemifacial spasms and lose taste buds and hearing on my right side. I also feel a lump in my throat when swallowing. I really believe mine is viral as I have been tested by MRI and spinal fluid for MS, RA, Lupus, Lyme and multiple others. I can't find a doctor oh is interested enough to take the time to work on my case long enough to find an answer. Please let me know if you ever resolved your issues I hopes that it may help me. I feel like I am aliv but still loosing my life and I'm a single mom. I look fine and there is no diagnosis so my family doesn't understand. Thanks for your help.