Another Nose Bleed - Going to ENT - Please read

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jdeet
Regular Member


Date Joined Jan 2008
Total Posts : 32
   Posted 1/29/2008 5:06 PM (GMT -7)   
My brother had two more nose bleeds.  He had one about half hour ago that was so badly with clots coming out.  :(   My mother called an ENT and he is going there now.  Those of you that followed my story....  The swollen ankles through us off guard and now these nose bleeds...  All in a matter of a month..  He goes to his 2nd appointment rheumy on Thursday.  Still saying my prayers that he doesn't have an autoimmune disease. Anyone reading and have heard of nose bleeds and what caused them?  Obviously I know it isn't rare to get a nose bleed.  BUT 3 in 2 days?  The last one was so badly that my sister is cleaning up his bathroom right now and washing his sweatshirt.  That's NOT normal.  Thank you all for listening and offering insight again

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/29/2008 5:20 PM (GMT -7)   
Hi jdeet,
 
I haven't heard that nose bleeds and lupus are connected, but that's not to say it can't happen.  It's good he's seeing a doctor right away.  In the future, if he gets them that badly, go straight to the ER.  That can sometimes be the best way of getting the ball rolling in the right direction.  Plus, if it's really serious, the ER is the only place to take him.
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 1/29/2008 8:41 PM (GMT -7)   
Is the climate that you live in really cold and dry.  I've actually been getting nosebleeds for about a month and I broke down and went to ENT.  Mine would be about 2 - 4 days a week and they would last for about 5-10 minutes.  When I went to ENT the doctor could see where I had been getting nosebleeds from and said that the dry weather was more than likely to blame.  I kept getting them because it would scab over and then the scab would burst when I blew my nose, causing repeat nose bleeds.  He cauterized my veins in my nose to prevent them from bleeding.  I also have medicine to clear out my sinuses and I'm to use a saline nasel spray just about every hour to keep my nose moist.  I also sleep with a humidfier on.  So far I haven't had any problems.  I got my nose cauterized on Friday and the scab came out today and I haven't had a nose bleed yet.  I hope it's nothing serious, but I will keep you in my thoughts.
~Firebabe~
 
"Challenges make you discover things about yourself you never really knew."
 
SLE and Class II Lupus Nephritis


jdeet
Regular Member


Date Joined Jan 2008
Total Posts : 32
   Posted 1/29/2008 8:47 PM (GMT -7)   
Thank you for replying firebabe..  My brother lives in Long Island, NY.   Today is not as cold as it has been(today is the day he had more of the severe nose bleed.)  He went to the ENT tonight.  They did cauterize it.  He went to the pharmacy after his visit to get a gel cream or some sort.   I hope this helps.   I wonder if this is a lupus symptom seeing you had it too.  He has never been diagnosed with any disease.  He goes to a rheumy on Thursday.  He has had swollen feet/ankles for over a month like I mentioned previously.  Thank u for your response.  Best Wishes to you.

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/30/2008 6:03 PM (GMT -7)   

Hi Jdeets, I did a little research and there are other autoimmune disease that do mention nose bleeds. but like others said the weather could cause some of this.  the dry heat from the furnace and stuff. There must be somthing going on with your brother with the swelling in his feet and ankles. Hopfully they will get a better idea with the rheumy and blood work. He may be anemic. I have had several nose bleeds like the one you mentioned. The doctor cauterized it as well. I still get some nosebleeds but not very often. Just about what a normal person would get. Try to hang in there the stress isn't helping you 3either but your brother is lucky to have a sister that cares and worries the way you do. I'm sorry I havn't kept up on what the reasoning is that makes you think he has a/i. I've been a bit under the weather myself.

How old is your brother is there a/i in your family? ewhat did the rheumy say with his first appt? did they do blood work?

hugs

carol



God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


jdeet
Regular Member


Date Joined Jan 2008
Total Posts : 32
   Posted 1/30/2008 7:32 PM (GMT -7)   
Hi Carol. THe first rheumy said that he is having swelling due to his bone spurs. Not true. Even my brother's foot doctor said that is so unlikely. My brother's foot dr. is suscipious of an autoimmune disease therefore wants him to get a second opinion with a rheumy. His appt. is tomorrow evening. Probably shouldn't expect to find out much seeing he will need to wait for his blood work. (his foot dr. gave him a list of things he wants him to be tested for - mainly a/i diseases). Do you think he'll find out much tomorrow? My brother's main symptom is the swelling of his feet and ankles. He doesn't have a rash, sores in his mouth or nose. He hasn't complained of any other joint pain. He always suffered with getting run down quickly though. My whole family is like that. He now just had the 3 nose bleeds in 2 days out of nowhere. It just seems related to me for some reason. A/I diseases do not run in my family. My brother is 28 years old. He is married and has a 5 month old daughter. I see you have Lupus like symptoms, so does that mean you were never diagnosed. What are your symptoms?

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/30/2008 8:06 PM (GMT -7)   

Hi hun, well I doubt you wil get much of an answer tomorrow he will need lots of blood work. The good thing is most of the test come back pretty quickly. Sadly it can take weeks to months to years before they come up with an answer t work the problem is. What normally happens is they treat the symptoms even without knowing what the problem is. Don't be surprised if you have to see 3 or 4 different rheumys before you find one that will work with you. It's pretty common.

as for my symptoms I have two different diseases. (maybe) I was dx'd with COPD which is chronic obstructive pulmonary disease. caused from smoking or pnemonia or bronchidus.My lungs are shot. My doctor thinks it's caused by what is caused Lupus lung. it's where lupus attacked your lungs. She's wants my rheumy to deal with it but he says I have primary billiary chirrosis which is caused by auto immune attacking my liver. My liver is enlarged. It's my understanding a biopsy is not pleasant and so they are fighting about what they want to do with me. My back hurts all the time because my lungs are enlarged. they push my ribs toward the sides and causes a lot of pain kind of crushing the bones in my ribs in my back. I have what is called lupus fog where you can be in the middle of a sentence and completely forget what you were talking about. It can also effect your brain. Other symptoms come and go. I've had the same swelling in my legs and feet. It seems like most people here start off with a horrible feeling of the flu that won't go away. I cried in my sleep. From my knees down were bright red. below the knee was swollen half the size of my thigh. both legs. You couldn't see my ankles anymore because they were so swollon. My feet bled because they had stretch marks from being so hugh. I could barely walk  for about two weeks. I have what look like spider veins on my chest and back. I have little red dots on my fingers.  of course they did all the blood work and knew there was somthing but blood work alone doesn't tell ya much. there are like 11 criteria and you have to have at least 4 to say you have lupus. Alot of these things come and go. I actually have good days. I'm just going back over the past couple of years of things that have come up sence you asked me about symptoms. The best I can tell you is to be patient because it takes a long long time to figure out. Oh yeah yes there is pain involved. In fact one of the ladies in the group made me a bean pillow that has helped me to sleep at night which has helped me alot.

good luck and keep us updated

hugs

carol



God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 

Post Edited (okie) : 1/30/2008 8:09:06 PM (GMT-7)


jdeet
Regular Member


Date Joined Jan 2008
Total Posts : 32
   Posted 1/30/2008 8:22 PM (GMT -7)   
Carol,
Oh you have been through so much.  I really wish you only good health for all the years ahead.  What did you do to treat your swollen legs/feet?  Did that happen just once or was it a chronic for a while?  My brother was put on predisone and it helped some but when he went off he will have bouts of swelling and pain(mainly when he does too much like clean the house or watch the baby ALL day).  He did have a cortisone shot once .  BOTH his feet/ankles are swollen.    He's never had flu like symptoms like you described.  I hear you all say that not all symptoms are the same in everyone.  I also hear you all say that it could take years and years for a diagnosis.  Can I ask you a question:  Why do so many people seem to start out with say Fibro and then end up with Lupus?  All the posts that I read here I've noticed that down in the description soooooo many people have numerous problems/diseases, etc.  Can someone have Lupus and JUST Lupus or does it always mean you will develop something else?  Also, what's your take on the autoimmune diseases...is there one that is not as serious as say Lupus?  Just wondering if he does get diagnosed with an A/I and not lupus could I take a sigh of relief.  I am just soooo scared for him.  Also, when you noticed your first symptom then how long after did your 2nd symptom develop?  Sorry so many questions..  I'm just looking for so much information in so little time.  Thank you.

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 1/30/2008 8:46 PM (GMT -7)   

Hi Jdeet,

   I hope your brother gets some answers soon to his nose bleeds and swelling of the feet and ankles. I'm sure this is scary for your family. Hopefully, the blood work will come back quickly and he will get something to treat the symptoms at least. Please keep us updated and take care. You and your brother will be in my thoughts and prayers.

                                                            Babs


 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/31/2008 8:54 AM (GMT -7)   
jdeet, please let us know how your brother's appointment goes. Try to make sure that the rheumy knows about every single symptom your brother has had, even ones he's had in the past that he might not be having now. The others are right that you probably won't find a lot out for sure until the bloodwork is back, but the rheumy might give you some idea of what he is thinking might be wrong. I really hope your brother gets some answers - waiting and not knowing are so hard.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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noone
New Member


Date Joined Apr 2008
Total Posts : 1
   Posted 4/12/2008 6:29 PM (GMT -7)   
Just wandering what has happened since you posted this message. It sounds to me like a malformation problem. I can not think of the name of the problem but saw it on Diagnosis X last week. The patient had all the same symptoms as your brother and the md was able to make a correct diagnosis. The patient had the vein malformation removed and she was fine, the nose bleeds, ankle swelling, clots, disappreared. They did say one characteristic of this disorder was a spider vein behind the ear. I will research their website to see of I can get you a name. Please note the symptoms are similar to Lupus.
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