Want to play doctor?

<p>Actually, I’m not really expecting any particular medical advice, but rather, sort of a thread where I can glean some advice as some posts on other threads have seemed rather thoughtful and beneficial… and today… I’m in a mood (or pain) enough to share my dilemma. (Tomorrow I might regret sharing, but hopefully I’m still anonymous enough on this forum.)</p>

<p>In short, I’m looking for ideas - not really a democracy where “most votes win” but thoughts to sift through.</p>

<p>The rest is going to be long to try to put enough information forward to base things on. If looking for “quick,” skip it.</p>

<p>One important (maybe) detail to this is I have a benign brain tumor that was discovered last Oct. I’m told it is NOT related to the rest, but sometimes I wonder. It was treated with radiation from Jan - Mar and hasn’t significantly changed since then according to the last MRI (early June). Radiation is not supposed to be related to this other stuff either.</p>

<p>This “other” issue is weird. Last July I started feeling tingling/numbness in my hands occasionally and merely thought the carpal tunnel I have (and have had since youngest was born 18 years ago) was starting to get worse.</p>

<p>Sometime later I figured out it really wasn’t related to the carpal itself. The carpal affects my thumbs and a finger or two first, then spreads out to the rest of the hand. It only happens when my hands are above my heart as with driving or reading a newspaper. To get rid of it, I merely lower my hand(s), move it, and wait a short period. No biggie.</p>

<p>But this new stuff hits the pinky and ring fingers first (both hands) and goes away almost as soon as I move them. It comes on (now) whenever I’m still and is starting to come on occasionally when I’m moving, but usually it’s when I’m still (standing, sitting, or lying down). It happens all the time then - no exceptions.</p>

<p>In Dec of last year, I noticed the same thing happening with my feet - starting to get tingly/numb when sitting - and starting with my little toe + one next to it just as with my hands.</p>

<p>I also noticed it happens far more quickly when I’m sitting in any chair with my head resting on the back of the chair. If I stay that way, everything gets numb (never torso though), then I can get cold chills, then I used to fall asleep. Lately I’ve really been pushing that part of it and have been able to keep myself awake if I try, but I still sometimes get tired - very tired - any time of day.</p>

<p>Since the brain tumor was found in Oct, I assumed it was all related. I had mentioned it to the doctors…</p>

<p>But when I later mentioned them again during weekly checkups during radiation, I was told that no, these weren’t part of it. I could have had it checked in to, but I thought I’d deal with one thing at a time.</p>

<p>Since then, at nights, it’s pretty awful since I don’t move enough in my sleep. My arms to my elbows and sometimes higher are always painful when I wake up. My legs to my knees are the same way. It’s part of why I can’t sleep in - ever - it’s too painful to try to sleep again after I wake up. The stuff goes away with movement, but returns again almost immediately. RLS was suggested, but it really doesn’t seem to fit any other part of it, so I’m doubtful.</p>

<p>No cause for this was found on the June MRI, but that was done on a good day unfortunately (I’m not sure it mattered).</p>

<p>But up until now I could still DO everything I wanted to do. There was no pain involved (aside from nights) or muscle issues, so I figured I’d just live with it. After all, everyone gets something sooner or later. This wasn’t that bad.</p>

<p>However, within the past couple of months (after radiation), the back of my head will sometimes hurt (becoming far more often than before). It’s kind of like the math pi symbol coming down either side (or both) on corners if the neck were square and/or across the top at the base of the skull. Occasionally it feels like a golf ball instead. No sort of neck/head movement affects it in a better/worse sort of way, but getting out and walking can sometimes make it feel better - other times not. It’s not always there. It varies. It can be morning or night or anytime in between and it’s getting worse (I think).</p>

<p>Then… there are new muscle deals (last 3 - 4 weeks maybe). On some days I can’t get a quart of anything out of the fridge without pain. Today I can’t even eat an apple or brush my teeth without feeling it. I can do it - just I feel it in a painful sort of way. My youngest son who took Anatomy I and II last year tells me the muscles involved are extensor muscles (hearsay from him). Those are the ONLY muscles involved and it can be in the right arm (most common, but I’m right handed), left arm, or both - or on really good days - neither. Those days give me hope, but then that hope is dashed the next day.</p>

<p>Yesterday it wasn’t extensor muscles, but deltoid muscles (similar hearsay). Yesterday is the only day those were “hit.” On a couple of days I’ve been sitting and feeling a real burning feeling in my biceps, but no pain when actually using them. That’s gone now - forever? Who knows.</p>

<p>Using the muscles will make them worse for the day - seems to have no effect on whether the next day is good or not. Not using them can help a little in that it doesn’t make things worse, but it also doesn’t get things done around the house.</p>

<p>I have no idea if these latest things are linked or not. I guess I’m in the “waiting to see what happens” mode.</p>

<p>There are issues from the radiation that are hanging on some - fluid building up near the left ear that builds then releases and repeats, but it doesn’t seem to coordinate with any of the rest. I also often hear my heartbeat, but again, that’s supposed to be fluid related. These are supposed to go away in 2 - 6 months, and again, I’m told it’s not linked when I specifically asked, but I still wonder.</p>

<p>Continued in next post - too long for one - hey, I warned you it would be LONG!</p>

<p>Part II</p>

<p>Thyroid, diabetes, and B12 issues have been ruled out from blood tests. The MRI showed nothing (aside from the known tumor). There was ONE difference in that this most recent report said the tumor was “at least minimally restricting the left carotid artery.” The last two MRIs (Oct, Dec) said no restriction seen.</p>

<p>The radiation doc gave me a neurologist referral and a close friend who has heard about the basics gave me another. Others have suggested seeing a chiropractor or doing something for inflammation - thus ibuprofen or curcumin - the latter being more natural and easier on the body.</p>

<p>But I’m not a doctor person - not really. Growing up I recall four doctor appts. That’s it. Afterward I had a complete physical for the Air Force when I was 17 and a little more when they found out I have asthma in college. (I don’t ever have issues with asthma, so I wonder about that diagnosis.) It got me dismissed from the AF back in the 80’s, but I’ve literally never had issues with it - nor do I do loads of exercise though - lots of walking.</p>

<p>I had an Ob/gyn for all three pregnancies, but other than that, in the 25 years I’ve been married, I’ve been to a doctor’s office 4 times - once to update my tetanus vacc, once to get Lyme antibiotics due to a tick bite, once for a work physical (a total joke), and once to get antibiotics for pneumonia. That’s it. I kind of liked it that way.</p>

<p>I’ve been to a doc more in the past year than I’ve ever been in my life if you don’t count pregnancies…</p>

<p>I’d really like to avoid more. But, that might not be practical. So, in Aug (when we’re at the empty nest stage), if this stuff is continuing, I probably will opt to do something.</p>

<p>So far, my options seem to be:</p>

<p>Get an appt with one of the recommended neurologists - haven’t done so as some question whether it’s an inflammation issue or neurology issue.</p>

<p>See a chiropractor to see if something is out of line.</p>

<p>Take curcumin or ibuprofen for a while to see if it improves on its own.</p>

<p>Deal with it and quit complaining (would be much easier if I could still continue with everyday life activities).</p>

<p>Cost is not an issue. We’re members of a health share that will cover anything/anywhere (as long as it involves real MDs) and could afford other stuff on our own if desired. Reluctance can be an issue, but my body might be assisting with that. Preferring “natural” healing methods also can be - and right now - even a nice snake oil placebo that “works” would be wonderful.</p>

<p>With all the varying of this thing, I’ve also seriously wondered if it’s all in my mind… or aliens coming down and playing with my body, then doing a darn good job of erasing the memories of it.</p>

<p>But my options/suggestions are really divergent and my lack of knowledge has no idea who to go to - preferring NOT to guess incorrectly as that would only lead to more appts rather than less.</p>

<p>So… any thoughts on what YOU would do? I’ll read and glean and ponder… and hope the darn thing fixes itself while I’m making up my mind.</p>

<p>Just a couple of random thoughts.</p>

<p>The head pain thing sounds like something MIL has. She gets botox shots believe it or not, in her head/neck, every few months to try to alleviate the pain, which is otherwise disabling. The tingling/numbness sounds like neuralgia, which MIL also has in her feet/legs as a result of chemo for cancer in 2011 (still has the neuralgia). </p>

<p>SIL has fibromyalgia, which is a vague and apparently ill-defined condition, but causes muscle pain similar to some of your descriptions. Also possible they are related to a pinched nerve or something like that. </p>

<p>If I were you, I would try to get a clearer self-diagnosis by entering symptoms on webmd, etc. and seeing what you think fits best. Also, since there seem to be a lot of things, I think I would start a journal or spreadsheet to chronicle the issues and try to relate them to how much and what type of activity you are doing. </p>

<p>Circulation can affect your extremities.
Do you do a lot of driving/ keyboarding?
That could constrict your muscles in upper back, which could affect blood flow to fingers.
I prescribe a massage. :slight_smile:
Improving strenght of capillary walls may also help.
So you bruise easily, have dark eye circles?
Vitamin C, coenzyme Q10 and hesperidin all help to improve circulation.
Do you get enough exercise? Aerobic?
Do you have low blood pressure?</p>

<p>My naturopath prescribed black cohosh and hesperidin for hot flashes, which has also helped my restless leg syndrome. ( are you pre- menopausal?)
Are you dehydrated?
( my daughters go to remedy)
Try drinking three liters of water a day( or two at minimum) for a week and see if that alleviates any of the symptoms.</p>

<p>This might be worth considering.
<a href=“Raynaud's Syndrome - Numbness in Toes, Fingers, Ears & Nose”>http://www.nativeremedies.com/ailment/symptoms-of-raynauds-disease.html&lt;/a&gt;&lt;/p&gt;

<p>Stress can also exacerbate any minor symptoms, and being treated for a tumor certainly falls under stressful situations.
Is it time to change your mattress?
I have fibro & the mattress makes a huge difference.
<a href=“Fibromyalgia Diagnosis - Tender Points and Trigger Points”>http://www.fmnetnews.com/fibro-basics/diagnosis&lt;/a&gt;&lt;/p&gt;

<p>I would be careful consulting a chiropractor. I have seen very few that I thought did any good, and some can be dangerous.
<a href=“http://www.washingtonpost.com/national/health-science/how-safe-are-the-vigorous-neck-manipulations-done-by-chiropractors/2014/01/06/26870726-5cf7-11e3-bc56-c6ca94801fac_story.html”>http://www.washingtonpost.com/national/health-science/how-safe-are-the-vigorous-neck-manipulations-done-by-chiropractors/2014/01/06/26870726-5cf7-11e3-bc56-c6ca94801fac_story.html&lt;/a&gt;&lt;/p&gt;

<p>Well, even though you’ve not had many doctor appointments in your life, perhaps that stage of life is over.</p>

<p>At first I thought of spinal stenosis. DH has this, and when he’s driving, if he keeps his hands in the “10 and 2” position, they tingle and become numb. It’s due to compression of the spine/verterbae on certain nerves feeding the hands.</p>

<p>However, it seems to me that the list of possibilities is endless, and the point is not for us to figure out what the problem is. Presumably, you’d like to ameliorate the problem, not just identify it. And that’s why you need a doctor.</p>

<p>Do you have an internist? If so, I would start with him/her. If not, I’d start with one of the neurologists. Know, however, that this might not be due to a neurological condition. It might be, but not necessarily. But if the neurologist suspects something else, he’ll tell you that, and you’ll find a specialist in that field. </p>

<p>And like emeraldkity, I’d stay away from chiropractors.</p>

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<p>One of my first thoughts too, but there’s never any “pins and needles” feeling with this as there is with a body part falling asleep or the carpal tunnel.</p>

<p>On one of my first PCP visits he also had an EKG done and it was normal.</p>

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<p>No</p>

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<p>It sounds like it’s worth a try - you never know! ;)</p>

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<p>No, actually I DON’T bruise as easily as most people I know. And I’m very rarely sick - even working in that cesspool of virus exchange we commonly call a public high school.</p>

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<p>Nothing aerobic as that’s one thing I gave up after the AF and asthma designation. I thought it explained why I had issues breathing with aerobic stuff. However, when in school I’m on my feet quite a bit. We walk often - min of a mile per day and sometimes up to 5 or even 9.</p>

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<p>No. Last reading was something like 130+/65+. Before the BT it was often 110+/65+, so not much change, but not lower.</p>

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<p>Maybe. Heading into menopause was a definite possibility due to the radiation and there are some signs it might be happening, but not tons yet.</p>

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<p>No.</p>

<p>Thanks for the thoughts to consider/try. I’ll have to look up black cohosh and hesperidin.</p>

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<p>Interesting on the botox. This isn’t totally disabling (yet) and I hope it doesn’t get there. I just looked up neuralgia. There’s nothing at all in the face nor on the MRI. There’s no rash. It does respond to ibuprofen. I found that out a couple of days ago when I had a bad headache. Well, at least I think the ibuprofen helped. Since it varies, it could have decreased naturally I suppose. I guess I ought to try it again when just “it” is the problem, but I do usually hesitate before taking anything preferring to tough many things out. I may have to change my ways I suspect.</p>

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<p>I googled this one too. It doesn’t sound likely. There’s no pain on any of the common pressure points and no widespread pain in general. It’s very localized and consistent when there. It just varies when it’s there or not. I don’t think fatigue is an issue in general either.</p>

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<p>This was a first consideration that was suggested. I forgot to mention it. My SIL is a working PT and she does NOT feel this is it as it hits too many different nerves (four in different locations other than from one spot in the brain) and it was not improved by some movements she tried. At that point she said it was beyond her knowledge.</p>

<p>I would consider seeing a rheumatologist. First flag was the lyme, second was the fact that you don’t get sick. Could be an autoimmune disorder. I’m pretty sure that’s in the rheumatology arena.</p>

<p>I hope you feel better!</p>

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<p>That was interesting, but there’s never an issue with the face or color of the skin. My hands and feet are often cold to the touch though. There is never any tingling as there is when I come in from the cold in the winter after having been out for a while. This one is immediately (or close to it) gone with movement, but then right back shortly after the movement stops.</p>

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<p>This fits my wonderings as to whether it’s all even “real” and “worthy” of checking into or not - esp after nothing showing up on the MRI. It’s definitely a possibility I’m considering, but then when my middle son points out that “Mom, most people your age don’t have issues grocery shopping” (picking up items), my mind switches the other direction.</p>

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<p>Maybe a good excuse to change the mattress, but it’s definitely not fibro - see above for reasons. The same “stuff” happens if I sleep in my armchair or in my bed - or in hotel beds. It’s likely not a factor.</p>

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<p>Noted… though I also note that some folks swear they do a great job if it’s a nerve pressing issue and it sounds like this one might be - somehow.</p>

<p>All thoughts to ponder between now and August.</p>

<p>Do you feel better if you float in warm water? Do ice or hot packs help? What about a cup of tea or coffee? A cup of juice? Lying on the floor stretching? Taking three really deep long breaths? </p>

<p>When my husband had chemo, it was over a year before he “felt right” again, even though the easy-to-describe symptoms had gone. When I had surgery on my knee, it was a year before I felt like I was back to normal, as well. I think any kind of serious medical treatment is “a massive assault on the body” (as DH’s oncologist described it) and as such it takes quite a while for homeostasis to be re-established. In the meantime, your body is clearing the side effects of the treatment–and each person is different.</p>

<p>If your body is telling you you need a lot of sleep, my advice would be to try to sleep as much as possible for a while; prioritize your life and get as much help as possible, release yourself from as many committments as you can, and simply focus on healing and health, eating as well as possible, exercising as much as you can, taking as much care of yourself as possible. </p>

<p>I can answer the tingling in the fingers issue because I see a specialist about it. The kind of person you need to see is a hand and upper extremities person. Tingling in the outside fingers comes from compression of the nerve mostly in the elbow though it can also occur in the big area in the shoulder where all those nerves pass through. (Numbness, tingling up high suggests compression in the shoulder/neck.) You can tell: tingling in the thumb over from that side is a different nerve from tingling on the outside fingers. Standard treatment is something like this: get a soft pillow and some duct tape, tape the pillow into a doughnut of sorts and slide your arm into it over your elbow when you sleep. This will keep you from compressing the nerve and it will recover.</p>

<p>If the nerve gets really compressed you lose function. Like not being able to pick up something. Or a sense that your hand is dead and useless.</p>

<p>Also, see if you lean on that side and then don’t do that. I do that though I try not to.</p>

<p>Tingling in the feet often comes from nerve compression too, sometimes in the hips, which is why you get it while sitting. I get it in my car from the angle of my leg pressing against the seat. If it’s painful, it could be related to arthritis. Of course the first thing people think of is diabetes but you should be able to know if you have that.</p>

<p>I strongly suggest seeing a hand specialist - they deal in all those extremities. </p>

<p>I even have a vague numb area that occurs and sometimes buzzes in a spot on my shoulder up into my neck.</p>

<p>BTW, doesn’t sound to me like any relation to your tumor. </p>

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<p>(Closing my eyes…) I see nothing, absolutely nothing… sudden inability to read…</p>

<p>Or (sigh), I might be on here because this possibility has occurred to me as repulsive as it might be to my “natural loving” self.</p>

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<p>I had to look this one up and it’s one of the first I can’t pretty much eliminate except that mine gets better with movement, not worse. The driving part seems very similar though. I guess I’d have to put this vote with “neurologist.”</p>

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<p>Or a plan. Totally agreed. I’ve just received a bit of diverging info, so even on these days when I’m actually more willing to do something, I’ve no idea where to start or who to start with.</p>

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<p>Yes. He takes notes and does blood tests - some he came up with and at least the B12 + thyroid ones that I asked for due to suggestions from others. He’s yet to offer a suggestion. I guess I see him in the “maintenance for that which we already know” category. And asking around about others locally, there won’t be much difference if I switch.</p>

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<p>Noted. But also noted the spinal stenosis bit I looked up on a google search said chiropractors had comparable success rate to traditional methods - and it wasn’t a “pro-natural” site.</p>

<p>It sounds to me like it could be peripheral neuropathy. It’s most commonly seen in cancer patients who have received chemotherapy but apparently it can develop after radiation. I had some neuropathy after chemo. It was worst in the morning or when I sat for an extended period. Mine was mild, so it mostly consisted in “pins-and-needles” numbness, but I know neuropathy can be painful.
<a href=“Nerve Problems or Neuropathy | Cancer.Net”>http://www.cancer.net/navigating-cancer-care/side-effects/peripheral-neuropathy&lt;/a&gt;&lt;/p&gt;

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<p>Hmm, a new contender (rheumatologist). I’ll add that to the possibilities to consider.</p>

<p>FTR, the Lyme was pure preventative. We hike. Ticks happen. The PA I saw didn’t think the tick had been on long enough to worry about, but “just in case” went the antibiotic route. And I consider Lyme a dangerous enough offender to actually be “good” with all the antibiotics.</p>

<p>I’ve always chalked up the “not getting sick often” part to all the germs we’re exposed to be living rural on a farm coupled with reasonably healthy living (only reasonably - we do give in to junk food on occasion - and I am somewhat over the weight I’d find ideal since it crept up with age). But who knows? Thanks for the suggestion - even if it makes my end decision a bit more challenging. </p>

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<p>No idea as I’m not really a bath person, but long warm showers in the morning do feel good.</p>

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<p>Only stretching helps and not if it stretches the muscles currently affected. Otherwise I do stretch a bit as it eliminates the other stuff - temporarily.</p>

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<p>Yeah, the “new” side effects took me by surprise on this one as I figured I’d only have stuff otherwise literally associated with the radiation in real time. They tell me 2 - 6 months until those are gone. It’s far easier putting up with them knowing they are supposed to leave at some point.</p>

<p>But this stuff they tell me is absolutely not related - hence the wondering if I should be concerned about progression even with its variability. Or if it’s just something my brain is making up or taking out of context.</p>

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<p>My guys are literally awesome at home. They are out working on fence right now (we live on a farm) and know that there’s no way I can help them today. At times when things are bad there’s never been a problem getting an assistant to go with me to the grocery store (so I can assume the pointer/hunting dog position of pointing to what I want rather than actually lifting it). They do dinner sometimes and dishes often. One could kind of get spoiled…</p>

<p>I also do get to nap more than I’ve ever wanted to in my life, but don’t always feel that need.</p>

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<p>Interesting. The muscle in each arm that is generally the one affected comes from the elbow toward the hand. Sometimes I have had shoulder pain too now that I think about it. I think I’ll try the pillow trick, but I’ll sort of feel like I should be on Ghostbusters if I do it with both arms (both are equally affected overnight).</p>

<p>I’m wondering if this is a vote for trying Ibuprofen more?</p>

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<p>No loss of function - yet. I do tend to drop things more than the average person I see, but I don’t know if it’s related or I’m just not paying enough attention to holding things.</p>

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<p>Sitting, standing, or lying down. It’s lack of movement that brings it on - not position. I doubt it’s arthritis and diabetes has been ruled out via blood tests (plus no other symptoms). It was another “first thought.”</p>

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<p>This totally matches what I’ve been told by those who should know. I guess I was just wishful thinking that there would only be ONE problem rather than two.</p>

<p>((creekland)) It’s scary stuff. It sounds like a pinched nerve in your shoulders, neck, elbow or lower back or neuropathy. Suck it up and get to a good internal medicine doctor. I’m not anti-chiropractor but I also don’t think they’re the be all end all - lots of quacks out there. The other night I woke up with both sides of the ring finger and over in pain, and I was laying weird on pillows. </p>

<p>Take some ibuprofen, rest when your body is telling you to and go find some answers. Try alternating heat and ice and see if that helps. </p>

<p>My first guess would be B12 deficiency, but, gosh, there are so many potential causes of this. I knew a guy with trichinosis that had symptoms kind of like yours. Best of luck with reaching a diagnosis. </p>

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<p>This sounds very good in general, but it started before radiation (by 6 months) and even though it’s progressed since then, they tell me it’s not due to the radiation - supposedly different areas of the brain. Still, it says there are other causes… so I guess this is a vote to choose between the recommended neurologists. It’s definitely worse the longer I stay still (says someone typing for a much LONGER time than normal and feeling it in my lower legs a bit - the hands are busy moving).</p>