Need Help

[JPoirier724]

Hi all,
My medical history is long and complicated so I'm going to try to break it down into bullets:

1. Chronic Hep C (diagnosed at 14, but think I got it from blood transfusion at birth - preemie- 1978- before tests were done on donated blood). Dr won't do tx because he said the benefits don't outweigh the risks.

2. Neurological problems: Hydrocephalus (from birth- untreated- no shunt, etc)

3.Splenic aneurysm (believed to be caused by chronic liver disease)

4. Mini- stroke in Nov. Effects went away after about 24 hours, which is why it is called 'mini.'

Here are my current, acute problems that I need some guidance with. I've been to all of my doctors and all they do is send me in circle from one dr to another and no one ever has answers. I'm scared, and confused.

1. "Migraines"- "acute"- sometimes they last for days. The scariest thing about them is that my cognitive abilities are damaged terribly during them. I can't think. I can hear the voice of someone 6 feet away but can't understand what they're saying. I'm disoriented. I call them migraines because that is what, pain-wise, they feel like, but I'm not sure that is what they are. Migraine meds have been tried and didn't help.

2. Weight loss. I cannot stop losing weight. I've lost about 30lbs in 3 months or less. I have tried eating more- it doesn't help. There are things I can't eat because they make me sick- greasy foods especially. Sugar also makes me sick. I can't eat pastries without feeling like absolute crap after. Tested for diabetes and came back normal.

3. Loss of feeling in hands- not constant, but scary when it does happen. I can still use them, but I can't FEEL what I'm doing, if that makes sense.


This all looks so simple all typed out, but it feels like a living hell when it's happening. Sometimes I can go weeks and be absolutely fine- feel like myself, and do fairly well, but then I'll get a "migraine" and it takes me a week to get fully functional again. If not longer. There was also a question of whether or not I was having seizures but drs couldn't find seizure activity (my left side shakes, not for long, but when it does my right pupil does not respond to light and it disorients me.

I'm lost. The doctors are NO help. I have a neurologist, a liver specialist, and PCP. They all send me from one to the other- more tests, CTs, MRIs, blood work. No one has answers. Is there someone here who recognizes some of this and could point me in a direction? I realize that it may be several different things going on and not all related- or it could be. I'd just like to know where to turn...

3.

[beeblessed]

Hi there.  I understand how you must be feeling, having a variety of symptoms going on at once.  You know what you are experiencing is not normal and you simply want the docs to diagnose you so you can be properly treated.  Keep pressing ahead!  Here is a site with a wealth of medical info.:  
http://symptomchecker.webmd.com/symptoms-a-z

that I hope might help you research your symptoms.  I know how frustrating it is when you feel like you have to 'doctor' yourself, and pray the docs will be able to determine something difinitive soon.  Try not to freak in the meantime.  The rapid weight loss and the numb hands sound like potentially serious issues.  

Best to you.  Bee

[desrt]

Get the gallbladder removed. Aside from eliminating the risk of getting a stone lodged in your common bile duct, it might be a good time to have a laparoscopic liver biopsy done. If you were already at stage 3 three years ago, you probably need an accurate assessment of your progression, especially given your doctor's reluctance to treat.

[JPoirier724]

Thank you both... Idyllic here are the answers to your questions:

1. The last liver biopsy was done about 3 years ago. At the time I was at level 3.

2. I have Genotype 1A. My viral load is high. I don't remember the exact number but I do remember being told, when it was done, that it was considered quite high.

3. An ultrasound was done about a year ago, nothing significant came from it other than advice to have my gallbladder removed because of gallstones, although the dr wasn't alarmed and didn't think it was causing any of my problems.

4. I've never undergone tx for the hep C. My liver specialist doesn't think that I'm a good candidate for treatment. He said that the likelihood of it actually working is too small in comparison with the side effects.

I do eat healthy- in part because it's my only choice. Anything considered unhealthy makes me ill. The frustration I have with that is that it seems that no matter how healthy I try to eat it doesn't seem to help- and eating fruit and veggies isn't synonymous with weight gain, which I really need to try to do. I'm rather under weight. (105 at 5'6") but no matter what I do I can't stop the weight loss.

I'm truthfully at my wits end with all of my doctors. I've even switched doctors, hoping to get some answers. No one has any. The neurologist sends me to my liver specialist, the liver specialist sends me to my PCP, my PCP sends me back to the neurologist. It is a vicious cycle.

I appreciate the comments. Thank you.

[Idyllic]

You have listed several serious medical conditions and symptoms that could be attributed to many conditions. There are no doctors on this forum however their are many knowledgeable people, Many of us have more than one medical condition as well.

Obviously I cannot speak to the treatment and/or management of aneurysms, hydrocephalus or migraines however since the info you provided related to your Hepatitis C seems a bit vague it might help to know:

1. What level if fibrosis is your liver?
2. What is your Genotype? How about viral Load?
3. When was your last biopsy, ultrasound or other type of diagnostic evaluation of your liver.
4. Have you ever treated for Hepatitis C before?

As far as diet, not being able to eat greasy food or food with sugar may not be such a bad thing in and of itself. Eating more healthy balanced nutritional foods and exercise is always a help.

I realize such a simple and obvious suggestion may sound patronizing given the potential magnitude of your medical condition but a healthy lifestyle rules out a lot of variables when it comes to regaining your health.
Take care an be well.

[desrt]

None of this is simple, but if you have a neurologist, ask him what he thinks about off-label use of the Rx supplement CerefolinNAC for the neuropathy in your hands and the cognitive problems. If the weight loss is causing problems with your vit B, this might at least provide symptomatic relief for some of your problems. The NAC component might also help your liver.