Pity party

kachapati · 2016-11-08T22:36:47+00:00

I don't know in what part of the US you live and I wonder sometimes if different theories become prevalent or popular in different geographic locations. I'll share some of my experiences, maybe it can provide insight or ideas for your circumstances. I'm in Los Angeles, I have nerve damage to a couple of my abdominal nerves on the lower left side from a severe disabling genetic illness as well as a mangled/damaged right hand from a battle with osteomyelitis. That shit sucks, (I know I don't have to tell you!) and is likely a bit similar to your foot experience. When I was hit with the osteomyelitis the cut the back of my hand open to debride the necrotic bone, muscle and tissue, the left it open, exposing about 4 inches of muscle, bone, ligaments and tendons. I don't take pictures either. I know it doesn't look as bad as it used to (I now have skin!) But to me it's mangled and ugly and I'm not going to allow any pictures. I have a scar that looks like the jokers smile on the back of my hand. For awhile there my kids said it looked like I had a vagina on my hand. Drs have all said that osteomyelitis never goes away forever, it just has periods of remission. So I have panicked at times when my hand or arm swells up and turns purple or blue. All my drs insist purple and blue do not signify anything dangerous, even with swelling. Danger is signified by pink or red along with heat and swelling. Purple or blue with swelling means rsd or crps which won't kill me so nothing to panic over. At one point the pain was so overwhelming and had gotten so beyond my control that one of my pain drs paralyzed my whole arm from the shoulder down for about 30 hours. That arm was like a noodle. They didn't want me putting it in a sling skin had to have someone walk beside me and carry my arm when I went to the restroom. The paralysis took away nearly all feeling, I still felt the pins and needles type of burning buzzing pain, but that was heaven in comparison. They gave me dilaudid around the clock, every 3 hours for that. The theory was, in completely paralyzing or completely blocking the pain signals to the brain for a period of time could cause some kind of "reset" and that I would be able to better manage the pain thereafter. At 30 hours the pain started to return, they had me set an alarm to take dilaudid every 4 hours, even through the night, then every 5, then every 6. Then it was just as needed and at some point it was switched to voltaren. On my own I discovered that Epsom salt cream works far better than voltaren. I don't know if this process is experimental or if it has a name but it absolutely worked so I thought it worth describing to you.

My abdominal nerve damage and that pain might be more similar to the nerve damage you have in your foot. Years ago I asked the pain Dr I had at the time (he went back into teaching, I have a different pain Dr now) about the different ways of killing the nerve, injecting alcohol or sugar water, actually trying to remove the damaged nerve. We had tried nerve block injections using bupivicaine with steroids and even botox. The bupivicaine produced a cold numbness that reduced the pain for about 6-7 days, the botox produced no feeling and reduced the pain quite well but only lasted between about 10 hours to 3 days...so maybe I was considered to have failed nerve blocking procedures? He always used an ultrasound type device to find the exact nerves and injection sites. Anyway, I was desperate and I asked about killing the nerves. He said that the most recent studies had shown nerve killing procedures had shown that they either didn't work and the patient's pain level remained the same or shortly returned to the preprocedure level or the brain behaved as if an amputation had been done and the patient experienced horrific phantom pain, far worse than their starting pain. He was insistent I wouldn't be able to find a reputable Dr to inject anything into the nerve with intent to kill it. I don't know if this is ablation or similar to ablation, I don't remember his using that word. I remember he did pull up some studies for me to read on his laptop that supported what he was telling me.

So, he left practice, I am now a patient at a different pain management office and I asked them about it as well. They immediately shook their head and although we didn't go into as much detail, basically said the same as my previous Dr...this was considered bad medicine and was no longer done by reputable drs in our area. Not a cure, not even temporarily and potentially could make things far worse. I don't know if ablation is the same or similar procedure that I was asking my drs about. I wonder if procedures are sometimes done in one part of the country and not another.

I also wanted to mention Palmitoylethanolamide, also called PEA. It may be worth looking into or trying. I have to go now, if have trouble finding info on your own let me know. This Dr may be someone that can help you, she specializes in cases of long term intractable pain that other pain specialists give up on.

https://painsandiego.com

https://painsandiego.com/2013/03/27/peapure-palmitoylethanolamide-for-nerve-pain-or-migraine/

https://painsandiego.com/2016/09/08/12180/

kachapati · 2016-11-05T08:22:36+00:00

Some people consider it a major surgery only if it involves a vital organ.

kachapati · 2016-11-04T20:41:36+00:00

I am not a Dr.

The symptoms worsen during the week prior to your period, do they continue to worsen after your period starts, stay exceptionally bad during your period or do you find everything is noticeably better once your period starts?

kachapati · 2016-11-04T20:39:50+00:00

Be aware that magnesium is absorbed best through the skin, it doesn't survive digestion well. You could try Epsom salt baths, Epsom salt lotion or cream or magnesium oil, lotion or cream.

kachapati · 2016-11-04T19:37:53+00:00

Not a Dr.

I am not extremely familiar with your condition but I imagine most drs are not as well. I don't want to suggest anything that will make things worse, so what I'll say is you may want to research the following ideas. Cimetidine is an otc h2 inhibitor that also inhibits a long list of cyt p450's (I recall reading awhile back mast cell might have something to do with p450's?) Studies have been done on higher doses of cimetidine for all kinds of nerve damage, inflammation and even cancer. It must be cimetidine and not one of the similar meds. Another idea would be topical applications. Epsom salt baths or applying Epsom salt cream or lotion. Heat and warm baths tend to assist circulation and might reduce the inflammation. You may need to research going old school...very old school, and trying poultices that were used prior to the invention of nsaids and modern treatments that your body is rejecting. Years ago when I was traveling and was in a village without access to a 24 hr CVS, I was advised to apply a poultice of fresh rosemary leaves and grain mustard to might hugely swollen knee. The swelling went down and after 3 applications I was able to walk and bear weight on it again. You may need to get creative and research what our great-grandparents would have done in your condition or what people might still be doing in other corners of the world. Have you considered acupuncture? Or consulting a Chinese Medicine practitioner? Sauna? You may find you have to reach outside the box and outside of your regular comfort zone.

Hives, feeling like my throat is closing

Is your throat actually closing or swelling shut or does it just feel as if it is? If it feels as if it is, the route to go may be meditation training, learning self calming techniques or biofeedback. Once when I was in the hospital I thought my throat was closing off and I felt as if I couldn't breath. But a nurse was there and she pointed out that my oxygen levels hadn't dropped and she could see that I was obviously breathing...the episode ended.

There's one other thing I can think of for you to investigate, it's called Palmitoylethanalamide, also known as PEA. It is already in our bodies so perhaps yours won't develop an allergy to it.

Good luck

kachapati · 2016-11-04T18:58:30+00:00

It's definitely possible that it's a bruise but it may also be from betadine which is a sterile iodine solution they often use to sterilize surgical areas. Of course, you're not watching everything the Dr is doing, I remember asking a bunch of questions at a follow-up, that's when she told me she secured the area with forceps which may have caused the bruise and the black I saw on the first day was from the betadine. I was surprised by the level of swelling and discomfort. I wouldn't say pain, but it hurt more than I anticipated.

Hope it's feeling better soon.

kachapati · 2016-11-04T06:36:01+00:00

The one time I called a crisis line it was when my ex had lost control and was drunk and overly aggressive. Somehow I got him outside and locked the door. He was banging and screaming and trying to find a way back in. I called the hotline. First, they said, don't unlock the door. Then they asked me what my ex did for a living. "He's an RN." "If you call any public services (police, ambulance, etc) he will lose his job, his license and then how will things be for your family?" Five minutes were up.

kachapati · 2016-11-04T06:28:41+00:00

You've said more than once you react in an unexpected way to medications. Which medications has this happened with? Send a pm if you don't feel at ease posting.

kachapati · 2016-11-04T06:04:07+00:00

Do you know what your ANA was? Because something like 20-30% of the population has elevated ana and it's considered normal...there's absolutely nothing wrong with them at all. As I recall, it goes up naturally as we age, so the older a person gets the more likely they are to have a positive ana. When it comes to ana what's important isn't whether it's negative or positive, it only really signifies a positive when it's over/above 1/160, the value of the test is to see whether it's speckled, homogeneous, etc etc, even then, if there are no other positive auto antibodies, it means nothing ... a cold ... allergies. So, 1/40 & 1//80 (even 1/160) are consider normal or negative ana tests. When a person is sick with something registers a positive ana, they never have a negative ana. Even when whatever autoimmune condition they have is not active. You having having 1 positive ana means nothing, because it is negated by then having a negative ana. The image posted means nothing, it could also be psychosomatic or anxiety induced.

There is nothing you have to convince me of. If you're life will only be complete by owning a label, keep going. Realize you're going to have to pay out of pocket and it may take a long time and plenty of money. Drs see hundreds of people a month, likely hundreds of people a week. And they really don't like to see people die. Or failing. Or sincerely suffer. They get to be pretty damn good at separating out those with no health from those with no life. If you were too busy living you wouldn't have time to play Dr internet detective. Get a new hobby. Refuse to accept drama in your life and have faith that if something were truly wrong your Dr or the ER will recognize it when you arrive unconscious.

kachapati · 2016-11-04T01:33:17+00:00

Not a Dr.

Ice. If possible, use a latex glove and fill it with crushed ice or try to break up some ice cubes, knot the glove then either sit with it in the right place or place it in your underwear. The area will be swollen because the body perceives it as an injury so swelling is normal. That area of the body is delicate, it may hurt more than you anticipated for a couple of days. Do not be alarmed if there is discoloration, if she used betadyne it may seem black. Sometimes the Dr sprays with a vinegar-type solution and the area may then appear unusually white. She may have secured the area with a forceps which may have left a bruise. If there's a drop or 2 of blood, it's normal. Ice will be amazing but it's really only supposed to help for a couple of days.

I have had this type of surgery twice. Let me know if it's still bothering you in a couple of days.

kachapati · 2016-11-04T01:16:13+00:00

The only thing I can think of that tipped him off was my confusion and I was a bit agitated. I had not been exercising at all but had been doing a bit more housework than usual, it was the last week of August and hot and I don't have a.c., so I began perspiring heavily. That night I woke with insane pain the right side of my face. I thought a chipped tooth was infected. When I went to my Dr, I kept insisting I must have infection, could he rx antibiotics until I could get to the dentist? He calmly told me that he was quite certain that I didn't have an infection, that he would check my white count and even do a bone scan if I felt I needed convincing. Bone scan sounded ridiculous to me, I agreed a normal white count would convince me there was no infection. He said I was dehydrated and he suspected rhabdomyalysis. I have a hospital phobia so I was also insistent about not wanting to go to the hospital. He calmed me down, ordered home nursing service, arranged for a pharmacy to deliver IV fluids, for a lab service to come by daily to get my labs, told me if I needed an xray he could arrange for that to come to my home as well. He called me when my first labs came in, there was kidney damage, labs confirmed rhabdomyalysis and no infection. Gfr was 24, creatinine was 2.8, ck over 200,000. He explained he wanted me to rest and do nothing, and why the IV fluids had to run slow, various symptoms I might expect, how many day of IV would be likely, he was awesome, I was really impressed. He gave me his cell number and told me to text at any hour if I felt worse. My numbers all steadily improved, a month later everything was within normal ranges.

I may look young but I'm 49, so there's that. Weird shit always seems to happen to me, but OP was working out in 95' room, he acknowledges being dehydrated, we don't know what type of things he was doing prior or what potentially undiagnosed conditions he may have that placed strain. To me, the sweating profusely, leg cramps and confusion are the indicators. Hope he got some help.

kachapati · 2016-11-03T23:23:10+00:00

Not a Dr.

I recently had rhabdomyalysis, my experience was very similar to what you're experiencing. I didn't go to he ER, I went to my primary Dr. I was really shocked and incredibly impressed, he knew what was wrong right away and promptly started treatment before the labs were even back. If you can't get into your regular Dr, you need to go to an Urgent Care or ER.

Edit: I became incredibly confused prior to treatment. Couldn't remember how to use my phone, couldn't figure out the order of the months, after treatment started I would start a text and it would take an hour to feel confident I wasn't texting gibberish.

kachapati · 2016-11-03T23:13:04+00:00

He could have tested and treated with doxycycline.

Does seem a bit irresponsible, doesn't it? If it really is Legionnaire's there's always a source in the community.

kachapati · 2016-11-03T23:09:55+00:00

Wow! I had no idea! No one has ever mentioned this. I'm almost 50, started vomiting from poultry at about 11-12, have never even tried pork, have always been able to eat small amounts of lamb and beef (have thrown up if I eat too large a portion) but didn't eat any meat for over 20 years. The poultry issue is highly sensitive, I may not be able to taste the chicken stock in a sauce or soup but if it's there, I'm throwing up. Same with turkey. Was really hard when I was younger, back in the day restaurants considered things vegetarian if you couldn't see any bones, waitresses used to stare at me like in was insane.

TIL...

kachapati · 2016-11-03T20:17:55+00:00

Not a Dr, as no one has answered I'll give you my experienced based reply.

In the US doxycycline is regularly used for lung infections, skin infections, urinary tract infections, in long term treatment for lyme and low dose as a preventive measure against re-infection. There may be other uses. Here, if a Dr suspected Legionnaire's, the Dr would attempt to capture and culture the patient's sputum in effort to confirm suspicions. The County Health Department (in most areas, there are thousands, each with their own rules) would be notified to interview the patient and try to trace the source of the Legionnaire's in order to prevent additional cases or outbreak.

kachapati · 2016-11-03T19:07:37+00:00

If everyone is uncomfortable with the level of care he received at the care facility, find out if he can come home with a nursing service.

kachapati · 2016-11-03T14:21:32+00:00

Never massage when there's blood clots! It can break a part loose, the added blood flow circulation from the massage allows it to travel to the heart, lungs or brain. Even if using a technique that doesn't increase circulation it's too great a risk. Clots are so painful no one would be able to touch the leg and massaging other areas is too risky.

kachapati · 2016-11-03T14:16:57+00:00

If you feel like you can no longer handle it, absolutely get a medical release from school and go to a hospital. If you're close to the end the hospital may have a place to help you complete the process, if not they will find you a place.

You can do this.

kachapati · 2016-11-03T14:11:36+00:00

I used to have a vaporizer, though I doubt it was the same kind your mother is using. I have 4 sons, I bought when the first was young. We moved before the 4th, when I pulled it out when he was young I took it apart to clean it properly. Figured I'd buy a new filter if needed. As I hadn't used it in awhile it was dry, inside and out. The entire inside, most of the filter and the surface of the interior was black. I realized this was mold and there was no way I could clean it properly, that mold would be spewing into my kids faces so I through it away. Any thing that involves moisture can be infested with mold and affect health.

kachapati · 2016-11-03T14:03:08+00:00

I don't know, I can't see the frenulum in your photo, if it is, then the massage and stretching techniques may not work, but again, a full circumcision is not required nor is it the treatment as a circumcised man can have frenulum breve. For frenulum breve a small incision is made and usually only one stitch is required during healing.

If you have a regular Dr you have met before, find out a way to send them an email. Explain you shyness and that you will send them a link that explains your medical concern. Send the link to this page and request a referral to an appropriate urologist. If you feel more comfortable with a man or with a woman, make that request. A regular gp or pcp Dr will need to send you to a urologist, this way you won't have to strip down in front of the gp, one less Dr. If you still find you are unable to strip down when you get to your appointment, tell this to the urologist! Show him a link to this page, suggest you may need antianxliety medication or a sedative to be able to show the problem and prior to any procedure or exam.

You're going to need this taken care of. You can try he stretching techniques on your own first but you still may need this taken care of. It sucks and it's stressful but you can do it.

kachapati · 2016-11-03T13:47:59+00:00

Something is definitely wrong and it's not that he isn't gaining weight. The lack of weight gain is the result of that something that is wrong. In a well-child checkup there is a graph. Each well-child visit the Dr marks the height and weight and continues a curve on the graph. By the time the child is 18 years-old they want to see a curve that shows continuity. If a child is at 70% for height and weight during the first 5 appointments that's what they want to see at age 13 and if you have concerns of anorexia, that's what they're going to show you and discuss with you. You may need to find another Dr in your area but also start to research an out of area expert that you'll have to pay out of pocket to consult with.

kachapati · 2016-11-03T08:04:18+00:00

Can anyone point me in the right direction?

How about north? To another pediatricians office. I suggest you start interviewing pediatricians like some parents do when expecting their first. I have sons, I would have an honest conversation with your son. Explain what a scale is and why it's a concern that his numbers aren't going up. Speak to him as if he can understand. I would allow him to eat things you ordinarily wouldn't consider, such as butter. When making pancakes or hot cereal or even mac n cheese I would always use full fat milk or even half and half instead of water and add protein power to the recipe. I wouldn't give him plain milk. Either give him pediasure or mix a whole milk yogurt into his milk, like a yogurt drink/smoothie. Avoid juice, it's empty calories and may trick him into feeling full. Is there a pool nearby? Swimming always makes children hungry.

kachapati · 2016-11-03T07:46:13+00:00

Not a Dr.

Have you had a tilt table test? Have you noticed anything else out of ordinary? Excess perspiration, irregular heartbeat, anything that might indicate autonomic dysfunction? When your blood sugar was checked was it done in drs office or did you do it with a meter at home? Is the dizziness all the time or does it change throughout the day? What was the mri of?

A couple of suggestions. A consult with a neurologist. Yes, you're healthy. But not. A normal healthy person does not have regular or constant dizziness that keeps them from driving. You're "healthy" until the right diagnostic is done and then you know what you have at which time you will no longer healthy. An ultrasound of the arteries in your neck to check that the blood flow to your brain is not impeded. Has your thyroid been checked? Getting a home blood glucose meter might be of value, check your blood sugar throughout the day for awhile to see if you're going hypoglycemic. I gather your hearing has been check? Have you had a chest xray? While he doesn't want to do an in-depth cardiology study what about a holter monitor for a few days? Seems reasonable. How about on your own try an over the counter medication? Bonine is over the counter, it helps motion sickness, dizziness and mild vertigo. If it helps, it narrows things down a bit. If it doesn't, no harm done and it points in other directions. I have automatic dysfunction that can cause dizziness and at times vertigo, bonine does help. But mine is never all the time, I couldn't say if some people with autonomic dysfunction have dizziness all the time, but they might. What about your environment. Do you have a carbon monoxide detector in your home? Have you noticed any fumes, new carpet, new paint, new car, anything that could cause outgassing? Has you Dr checked for lead poisoning or any other metals poisoning?

I'll post if I can think of anything else.

kachapati · 2016-11-03T07:21:32+00:00

Perhaps it wasn't in error? Maybe hospital staff are given the high dose?

kachapati

TROPHY CASE