Symptoms and numerous medical conditions

What are your symptoms and conditions? .
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what do you do for relief. - 0.0%
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The doctors have pulled my driver's license because of the seizures - 0.0%
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Have any of you been given a time limit? - 100.0%
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I have been told to get my affairs in order, have you? - 0.0%

 
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GrannyG
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/11/2009 8:29 PM (GMT -7)   
I will definitely need some help on this chat room.  This is my first ever and I'm not sure what to do.  First, let me list my medical conditions and symptoms and see if any of you have the same issues, symptoms, etc.  I contracted Hep C in 1982 through c-section.  Earlier this year I was diagnosed with (trust me there are so many you will be doubtful that I am telling the truth):  end stage liver disease; cryoglobulemia, MGUS, celiac disease, pulmonary embolisum, seizures, sjorgen's syndrome, hashimoto's disease, hepatatic encephalopathy; pancytopenia; hypercoagulable disorder, vitamin B-12 deficiency; palmar erythemo, stage 4 cirrhosis, spider angioma, rheumatoid arthritis, restless leg syndrome, right vein retinal occlusion and migraines.  The normal tests were done except I did have the plasmaphorisis, and rituxin therapy.  Each day it seems like I am a little worse feeling, when I have the seizures it affects my speech and leaves me sleeping for a couple of days, I have oxygen when needed; Since I seem to have so many different things I wonder how others feel.  I don't even know when I feel good anymore.  Seems like all I want to do is sleep, day and night.  I don't feel like going anywhere, cold weather is hard on me.  I can be sitting watching tv and I break out into a hot hot flash and start sweating till my hair is dripping wet.  I was just wondering if others have these symptoms and conditions.  I can't be on a transplant list because of a couple of the other things that I have.  I am 63 years old and even though that is not old old, I feel that if I could get a liver transplant I would rather someone younger get the liver.  I have a great team of transplant specialist and they do keep check on me continuously.  I'm mainly just curious as to others and their feelings to see if I am putting things in my head or it is really happening.  Any comments or suggestions would be appreciated.  Also, let me know if I am doing this "chat" thing right.  Thanks.  Granny G

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/11/2009 10:48 PM (GMT -7)   
Hi Granny G,

Welcome to the forum, but I'm so terribly sorry to hear about all of your medical conditions and the circumstances that bring you here! And as to how you're doing with the "chat" thing....I think you're doing just fine!! :)

From the questions listed above, and your post, it sounds as though you want to know how many of us have similar diagnoses and symptoms? Well, I can definitely tell you how my list compares to your list; here is your list, as I understand it:

1. Hepatitis C, a very serious viral infection of the liver. I'm sure you already know that most of the other issues you listed are side effects of advanced Hep C: end stage liver disease (also known as stage 4 or cirrhosis), cryoglobulemia, MGUS, hepatic encephalopathy (which causes your seizures?), hypercoagulable disorder, palmar erythema, and spider angiomas. Maybe even the indirect cause of your pulmonary embolism?

2. Celiac disease, an autoimmune disease that many of us have; this is likely responsible for your vitamin B-12 deficiency, which probably caused your pancytopenia.

3. Sjogren's syndrome (autoimmune disease)

4. Hashimoto's thyroiditis (autoimmune disease)

5. Rheumatoid Arthritis (autoimmune disease)

6. Restless leg syndrome

7. Retinal vein occlusion in the right eye

8. Migraines

Wow, you do have a LOT going on! I can relate though, as I too have multiple issues and most of them were diagnosed in the past 18 months. Here is my list....you may be surprised at how similar it is to yours! BTW I'm 53 years old.

1. Autoimmune hepatitis; as the name implies, it's an autoimmune disease, not a viral infection like Hep C. But it does cause liver damage. My damage level is currently at Stage 2.

2. Celiac disease; in me it caused several problems, and probably even allowed all of my other autoimmune diseases to develop. My vitamin D deficiency and osteopenia are directly attributable to celiac disease.

3. Hashimoto's Thyroiditis

4. Rheumatoid Arthritis

5. Restless Leg Syndrome

6. Fibromyalgia

7. Migraines

8. Possible lupus/polymyositis/MCTD? Diagnosis pending.

I also relate to some of your symptoms...such as needing more sleep than usual, and suddenly feeling hot and breaking into a sweat even if it's not hot. I hope that this helps you feel that you're not alone! And I know that there are many others here with multiple medical problems just like ours.

Since you have celiac disease, I assume you are on the gluten free diet? I know that my migraines have been much less frequent since I went gluten free. If you haven't tried it, you might want to....it may help some of your symptoms.

In any case, I'm glad to "meet" you. You will be in my thoughts and prayers....

JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD. Possible lupus and/or polymyositis - diagnoses pending.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 10/11/2009 11:52:24 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/12/2009 11:25 AM (GMT -7)   
Hello, Granny G, and welcome to the forum.  Unlike a live chat, where people type back and forth in real time, this is a forum where you post and someone will answer sooner or later.  But you did it correctly.  Thank you for introducing yourself and your issues. 
 
Nasalady has written a great post in response to yours.  I noticed that some of your problems are autoimmune diseases.  It seems with that if you get one, you will develop others.  As she stated, many of your other problems are liver disease related.  I can tell you one thing that might make you feel a bit better is to avoid red meat.  It is the most difficult protein for the liver to process.  Also, eat a lot of fresh fruit and veggies, and I mean A LOT!  Stay hydrated, but NO alcohol, as I'm sure you know.
 
I am 66 and have hep C, diagnosed in '93 but contracted in the late 60s.  I also have cirrhosis and am a liver cancer survivor.  I am tired all the time.  That is the symptom that caused the original blood work to find out what was wrong.  I force myself to get up and do things or I could sleep 20/24 hours.  Lately, perhaps in the past 6 mos., I've noticed that I'm generally cold--especially my hands and feet, as I have Raynaud's disease, which has gotten worse lately--but when I lay down to go to sleep I get very hot.  I have to get up and set the AC colder.  I'm sure it's just further deterioration of my liver, but my liver enzymes have never gone sky-high.  I am seen at the transplant center at Mayo Jacksonville, although I've never been a transplant candidate.  They follow me with blood work, scans, and consults...only every 6 mos. now.
 
Where are you being seen?
 
You will find a lot of information and support here, and many people who can relate to what you are going through.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


GrannyG
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/12/2009 12:59 PM (GMT -7)   
I am seeing the doctors at California Pacific Medical Center in San Francisco. I told the doctors I check yes to every questionaire when it comes to diseases since it seems like I have most everything. I am waiting now on the results of the tumor tests and comparison to the bone marrow test to determine if I have myelenoma. Sometimes I get so confused and can't talk or remember but I know it's related to bone cancer. I think that's the most aggravating part of all of this. They won't let me drive and the only activities seems to be either WalMart or a doctor or lab. Most of the time it doesn't bother me and I have adjusted myself to everything including the stages of my liver and other areas. It's upsetting because all of this could have been avoided when I had my last baby in 1982. The doctor kept telling me that I was older than I was when I had my first two (also c-sections) and the things I was telling him about how I was feeling, some bleeding, etc. he was chalking it off. He raised race horses and was constantly in New Mexico racing. In fact we had to put my c-section off a day to wait for him to come in from NM. If he would have listened to me and taken care of me the way he did his race horses I honestly don't think I would have contracted Hep C and be in the position I am in now. His negligence is what I feel caused my problems. Nonetheless, I have everything and have learned to cope and adjust. I'm just tired of feeling sick and tired of being sick. I'm sure I'm not alone in these areas. I have morphine patches to help with the pain, and many other meds just like everyone else. I gripe about the "donut hole" that comes around so soon and the politicians who don't seem to really worry - they talk big but they should have some of us let them know how it really is. I don't want to change doctors, I think I'm in great hands. As you probably know social security is not much so by the time medicines come around you are done for the month. I know that God is with me and will not give me more than I can handle and he watches over me. I have family to help and take turns when I need things so I am very fortunate to have all that I do. I'm blowing up like a balloon between the enlarged organs and all, and I laugh that I have my own clothing store with the different sizes in my closet. When I was on chemo (2 times), I lost a lot of weight, and now I seem to have gained more than enough back. This feels so good to talk to others that can relate to all my issues and not make me feel like a hypochondriac. Thank you for being here.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/12/2009 2:02 PM (GMT -7)   

Granny G, welcome to my world.  you are indeed fortunate to have family to help.  I am in this by myself, except for help that I pay for, which isn't much.

Did I miss something in your original post?  Do you also have cancer?

The confusion and memory problems could be due to hepatic encephalopathy, which is buildup of ammonia in the brain.  Have you been placed on Lactulose?  There is info about that and liver disease info in the folder at the top of the Hepatitis Forum entitled Hepatitis Resources.  I think you can get a lot of helpful info if you read that.  I believe knowledge is power.  The more you know, the more control you have over your own treatment and life.

Also the swelling you mentioned could be from ascites or fluid in the belly.  If your feet and ankles swell, that's edema.  That is another liver disease symptom.  (Can also be cardiac, but you didn't mention that.)  Are you on diuretics?  From what you have said, it seems to me that your liver disease should have priority.  Are you seeing a hepatologist?  Are you seeing specialists for your other diseases?

Regarding Hep C, there was no test for it before 1993.  Some people did contract it from transfusions prior to that time, and I suspect you are one of them (when you had your C-section.)  Unless the doctor used unsterile instruments that had been used on a hep C patient before you.  Even then, it's highly unlikely that you could have contracted it that way.  I can almost guarantee it was through a transfusion, as it is a blood-borne disease.  Actually, any children born after you contracted it, should be tested for hep C, as there is the slight possibility of passing it on during childbirth.

I understand how you feel about being sick of being sick.  In addition to the liver cancer, etc., I have osteonecrosis (a condition in which the bone in large joints dies and disintegrates) and in the past 7 yrs. have had bilateral hip replacements and 3 revisions, the last being 2 mos. ago today.  I am hopeful that will be the last surgery on my hips...or anywhere!

I don't get out much (never have driven, being NYC raised), but mainly to the doctor, grocery store, and to get my hair and nails done about every 6 wks.  I recently moved to a sr. apt. complex where there are a lot of activies, but I am just not up to participating in any.  I do think I will look into massage, though.

You hang in there!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


GrannyG
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/12/2009 6:03 PM (GMT -7)   
I have so many things that I forget some of them unless it happens to be one that is giving me the most problems at that time. They just ran a test last week that shows the possibility and they are looking at my bone marrow tests to compare and then I'll know if I have to have another bone marrow tests (which I hate - this will be my third one this year). I also forgot to mention that I had to have 4 pts of blood before they could do the c-section in 1982. That shows what kind of doctor I had. State law said 8 pts was needed prior to a surgery and they had to give me 4 to bring me to state level. I also have osteoporsis and some of my diseases are inherited. I didn't know until the doctors did the test and asked me if anyone in my family had certain health issues. I checked with my mother and aunt and was amazed to find out the relatives that had died due to certain conditions. You know my parents and aunts age group didn't talk about family health problems or anything like that or at least mine didn't. Since then I have find out several things. They'd say "well hon aunt or uncle or cousin so and so died from .....and so and so had.... they just assumed us kids knew all of these things. There are about 13-15 doctors on the transplant team and each one seems to specialize in something that I have and each time tests are run or lab work done they send to the other and discuss the next step or procedure that will be done. I was in the hospital last year from Sept. 24th to Jan. 5th and it was like a medical show on tv. Each doctor would come in and discuss with me and my husband what had been done, what it meant and what and why they were going to do the next procedure. They didn't leave anyone out of the loop. It amazed me. What's more they would stay as long as they needed with me until everyone understood. It wasn't a 10 or 15 minute visit. They would come as late as 10:30 or 11:00 at night. None seemed in a hurry to get in and out. They are a great staff, the food was great (Friday was filet mignon or shrimp scampi with artichokes), I mean good food, the scenery was beautiful, the ocean with sunset and ships sailing out or coming in. I didn't mind it at all, plus I had my own room, mainly because of shingles and they didn't want anyone to get them plus the plasmaphorises. Sorry to keep talking so long - glad to know you and hopefully we will talk later. Grannyg

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/12/2009 6:38 PM (GMT -7)   
Hi GrannyG, and welcome to HealingWell. I am so sorry that you have so many illnesses. As you can see you aren't alone........we have others with numerous illness as well.

My husband was being seen by CPMC. You right the food was great. And the view.......I also loved the staff there too. Do you live in the bay area? I'm in the San Joaquin Valley.

My husband unfortunately didn't make it to transplant but it was not in vain...........I am here trying to help give support and educate people with some of the things that we went through.

Take care........thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/12/2009 7:22 PM (GMT -7)   

Boy, that hospital sounds great!  Mayo has good food, but nothing like that, I assure you.  The problem there is that you have to call in your order daily.  If you are sleeping or forget--too bad and you miss a meal.  One night I had a mustard sandwich, as that's all that the nurses could scrounge up for me when I woke up around 8 PM and the kitchen was closed.  That was during a previous hospitalization.

Granny, you have confirmed the transfusions.  That's how you contracted the hep C.  Which is pretty awful, but as I mentioned...no test prior to '93.

We will all support you as you cope with your health problems.  I am sure you fit into some other categories on Healing Well, also.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


GrannyG
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/12/2009 8:03 PM (GMT -7)   
We live in the San Joaquin area also. A long drive for visits. I usually have several within one or two days to avoid traveling so much. Due to all my other problems I won't or don't qualify for a transplant. Their main goal now is to keep me comfortable and try to keep other things from worsening or getting more. I'm sorry about your husband. Whether you know you time is short or not it is never easy. My first husband was 30 when he died of a heart attack and even though the doctors said his time was limited and he could go at any time it still wasn't easy when he passed. Junior High sweethearts and over half my life with him. He was like me back then they couldn't do bypass surgeries if a person had aneurysms and he had multiple aneurysms. So much has been discovered during the past years. Were he alive today he would have had surgery. But it was hereditary in his family and his mother, brothers, aunt and uncle all died before the age of 36. His mother was the 3rd person in the US to have heart surgery on her valve. Now that is some interesting reading on how procedures were done. I had to obtain all of the paternal medical history because our two kids also inherited this condition. But with medical being as it is today thank God they are in their early 40's. Cholesterol is high but their blockage is low so hopefully they will be old when their time comes. Like I say, God never gives us more than we can handle and if I can handle my children's illness this is a piece of cake what I am going through. I just wished I liked cake a little better. Talk to all tomorrow. Granny G

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 10/13/2009 2:07 AM (GMT -7)   
A can only think of my poor son. He is getting so many inherited ailments. My parents both died of heart disease. One of my brothers recently died of kidney failure 8 of them have diabetis One of my sisters has Lupus. Most of us have arthritis . My self one of the youngest girls at age 57 have osteoperosis, ostoarthritis,degenerative arthritis , degerative disk disease, hypertention, anxiety disorder, white coat syndrome (great to have that one at this point, and now unknown End Stage Liver disease. You really are not alone on this forum. Great bunch of hepful people. Keep posting!!! june
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