Tyson,
I experienced horrific memory loss also from Cellcept too!!! I posted about it a couple of weeks ago. It is incredibly scary so I completely understand your concerns. You should call your neuro back this morning and tell them you are having serious side effects!!! I saw my neuro about a week and a half ago and explained ALL the symptoms I was having. He said the memory loss was definitely med related. He felt like it was caused from the combo of cellcept and pred. He said it had also caused me to go into a serious depression. He took me off the cellcept completely and said it is time to get serious about getting me off the pred. I am down to 20 mg every other day. I can tell you I feel MUCH more clear headed since making these changes. I like you was forgetting things that I knew before like the back of my hand. I have a little dog I go see everyday at noon. I have been visiting him for 2 years and know their alarm code by heart. twice in one week I could not remember it for anything!!! The alarm went off and I had to call the owner. The second time was the one that almost sent me over the edge. I told my neuro I felt like I was living in a buble and everything was going on around me but I wasn't really there. I also like you mentioned had a fear of being in my car and forgetting how to get home. I don't want to scare you but this is very serious. One morning I was driving home and got so dizzy and sick I thought I was going to pass out. I had to call my husband and have him talk to me until I could get home. I was terrified I was going to pass out while driving and no one would know where I was. That is the day I stopped the cellcept. At the time I thought it was a reaction to Ambian but my neuro said it was from the med combo. Tyson get on the phone and INSIST they talk with you. If they can't squeeze you in for an appt have the Dr call you.
I am at the very same point as you where I would rather live with the weakness than the side effects of the meds. I didn't even feel like the same person anymore. Please also be on the lookout for major depression signs. DON'T ignore them. It is most likely from the meds and needs to be addressed immediately. My neuro didn't realize how severely depressed I was until he saw me. He went so far as to ask me if I was suicidal. I really think that and the memory loss together is what made him decide it was time to make some serious changes in my treatment. I am currently on 20 mg pred every other day. I am now taking 60 mg mestinon every 4 hours. It didn't work for me in the past but since the pred it definitely does. I can tell when it is time for my next dose. I am still taking a pill to help me sleep and Mirapex to help my legs relax at night and I hope to be able to stop taking the sleeping pill as soon as I am off the pred. Tyson please keep us posted. I am very concerned because I know where you're at and it is soooo scary!!! You may only be 17 but you know your body and when something isn't right. You may have to be insistent that they listen to you but you are your best advocate. I will check back later today for an update sweetie.
Kendra

Hey Tyson,

I'm not a doctor, but I seriously believe you need to be seen by one now while you are having these new symptoms. You mentioned in another post that one of your doctors prescribed an antidepressant recently. Have you started taking that in the past few days? Please put another call into your doctor if you haven't already, and ask to be seen right away. Make sure he/she knows of any new meds, if any, you're taking since you were there last. Let us know how you're doing.

Hugs,
Pat

Hey guys.

Kendra- sorry that you too are experiencing this. My neuro finally called back and I explained the symptoms to him(confused,memory loss, headaches) etc. He sugguested that I go to the er and get tested for meningitis. I have been here for 5 almost 6 hours. They did a ct scan of my brain and did a lumbar spine tap.

The ct so far has come back okay, and the lumbar hasn't come back.


I'm just tired, drowsy, confused and all that. I have 4 red lines on my thumb and my belly button is red and a patch of red on my abdominal area.


I hope you are all okay.

Tyson, They have to check your spleen! And your heart.

Do your doctors know about the red areas?

Do the lines on your fingers look like splinters (aka splinter hemorrhages)? Do your doctors know they are there? Damn. If you have subacute bacterial endocarditis, they won't know that without a transesophageal echocardiogram. A regular echo often doesn't catch it. It's where they look at your heart close up through your esophagus. A friend of ours had that. That most certainly can give you chest pain. And because your are immunosuppressed, an infection may not "show up" on CBC. It might on erythrocyte sedimentation rate.

And a HUGE sign of a spleen in danger is redness or a blue area around the belly button. Please be very careful, just in case. Don't move around too much or lift anything.

Other suggestions would be checking your platelets (CBC) and some clotting factors.

It makes me so mad that these doctors ignored you. You should've gone in last night. This kind of stuff you can't mess with.

I hope they will check everything out now. It's not nothing, that's for sure. I hope you'll be okay. Let us know. So much for staying off the forum for awhile!

Annie

http://emedicine.medscape.com/article/896540-overview

What I find completely NOT hysterical is that DUKE came up with the revised criteria for diagnosing SBE.

http://www.fpnotebook.com/CV/ID/SbctBctrlEndcrdts.htm

Tyson, I know the ER is not a fun place to be, but I am sure glad you are there. Make sure not only the nurses know, but the doctors about the red areas. Also, tell them about the horrible pain you were having going from your hip to your chest area. I hope they finally get to the bottom of what's been going on. Hang in there kiddo, we're all here for you. Feel better and let us know how you're doing when you can.

Big Hugs,
Pat

Your not going to even believe this.

I can appreciate the neuro saying I'm okay, sort of. I'm having memory problems and stuff, but this is what happened. She left the room, my uncle followed and went to talk to her. She came back in and said they were going to get a physc eval right now because they think these are all anxiety attacks. I yelled at my uncle, saying are you kidding me?

He's like you wanted to come in just 5 days ago, because your side hurt. Your nerd to stop this.

Honestly I hate this. I can't stnd people thinking that Its all in my head.

Well, that's a load of horse manure.

You have what sounds like splinter hemorrhages on your thumb. You have a red area by your belly, which could implicate a spleen problem. You have severe headaches, high blood pressure, etc. That is not in your head!!!

They can't make you take antidepressants or any other treatment. You have rights, even if you are 17. More so since you are.

I would be so angry right now if I were you but that won't help things. Be calm, cool and collected. Don't let them get to you.

Any new symptom, especially when you are on super drugs like you are on, needs to be taken seriously. And doesn't your uncle know that you can have an infection without obviously signs since you are immunosuppressed? No need to answer that!

Anxiety attacks do not cause severe headaches or a consistently high BP or red spots on your abdomen and nails. This is crazy - is Duke stuck in the 16th century?

I'm so sorry you are not being taken seriously. I really believe you would be at UNC. I am so concerned that they are missing something. It might be worth your while to have a LONG conversation with a lawyer. Someone has to stand up for your rights.

Hang in there.

Annie

Tyson I am furious after reading this and am so sorry you are having to deal with this horrible disease on your own. I wish we could lock Annie in a room with your uncle and Dr and let her educate them on how this is NOT in your head. I am so angry that they ordered a psych eval!!! This is insane. I can tell you 2 weeks ago when I was so out of it from the meds I thought I was losing it but KNEW it was med related and out of character for me to be so depressed and foggy headed. I am still not back to where I was before all the meds but am certain without a doubt that all the meds were the problem. Within 3 days of stopping cellcept it was like my head started feeling clear again. Ok Tyson there has to be someone who can advocate for you if they won't take you seriously. Does anyone know how he would go about getting an attorney at 17? Do you have a coach, counselor, etc who could help you with this? Tyson DON'T give up. Like Annie said you have the right to refuse anything and you are your best advocate. Since you are living with your aunt and uncle do you have someone who oversees how they care for you such as a court advocate? If so maybe you could talk to them. I believe this borders on abuse....your Uncle's statement "you need to stop this" clearly shows he doesn't get this disease!!! I am so incredibly angry that a 17 year old has no support system or anyone to fight for his rights. This is so insane. Please update us again when you can and try to keep your head up Tyson. I can't imagine how you must feel to be so young and basicly on your own. Just know that we are all here to support you, we understand and know this is NOT in your head!!!
Kendra

Tyson,

Ridiculous that someone even suggest it is all in your head. Makes me angry. You have something serious going on now and the last thing you need to do is be evaluated for anxiety. I wish I could help. Take care of yourself.