Very sick
 

Hey guys, i was just wondering if i could get some advice on what I should do here.

First off, im dead tired because ive been insomnic the past two nights, and very weak. I lay in bed staring at the ceiling, and get very angry that I cant sleep. First off my nose is so clogged I cant breathe out of it, so it makes it very difficult to fall asleep. Then when im laying down my swallowing and breathing are affected unsure of why..


Whenever i turn my neck to left or right it hurts, or even up. My throat is sore, my sinuses are sore, ive got horrible headaches, and stomach pain if i push on it. I also believe i have a fever, but my thermometer is not working, im going to go take my blood pressure to see if thats good or not.

Im feeling the worst I have in a long time due to an opportunistic infection.

I tried allergy medicine, it didnt work. it made it worse i think. and ive become immune to the sulfa.

great.

hope you all are sleeping.

I'm so sorry Tyson. It sounds awful. I don't have any advice, but I'm sorry you're still/again going through so much.

Abby

Also, as i woke up this morning, i am having chest pains and headaches..

i wish my doctors would do somehting.


Abby- Thank you for your support

Tyson,

I don't have anything to offer you medical-wise as you deal with all your symptoms. But wanted you to know that you are in my thoughts and prayers that you find some relief and resolution. I'm 57 and can't imagine dealing with all you are experiencing at your young age.

Hang in there.:hug:

Kathy

Tyson,

I really feel for you and wish I had some answers for you but don't.
I havn't slept for the past two nights as well, and now am struggling to walk and breathing is a concious effort.
My brain is eager to go out and do stuff, but my body is like a Salvador Dali picture, sliding off the canvas..........................
Laying down always makes my breathing worse, try propping yourself up a little.

I wish your Dr's would do something as well, but even after 7 years I get the feeling my drs are thinking "geez I've already told you, you arn't my worst case so go away and live you life already....."
I wish I had some answers, but don't.
take care, and keep comming here for support, at least we can all commiserate
Kate

Well, this is really hard to hear. . .that you are all not getting the help that you truly need and deserve. If you have to, get a new doctor please or go to the ER.

Kate, when my breathing became a conscious effort, that is when it started getting harder to get the breath in. I couldn't take a deep breath for a half an hour then it would get a bit better, then it felt like a block in my stomach would start moving up and the breath wouldn't go below that point. It got progresssively harder and harder to get a full breath in til we were scrambling for the ER and then I was in pulmonary ICU for 2 days, the hospital for 9.

Prednisone and mestinon, but especially pred, got me stable again with breathing. I am concerned about what you are saying. Please don't let this progress. . . call or see someone soon. debra

Sorry you're not feeling well Tyson. The only advise I can offer is that you contact the doctor that prescribed the antibiotics and perhaps he/she can prescribe a different one. If you have an infection it needs to be treated to to help eliminate some the of symptoms you're discribing. Sleeping with your head elevated as suggested by Kate I think, will help you breath better due to the stuffiness. Sorry I couldn't be of more help. Take care and let us know how you're doing.;)

Hugs,
Pat

Is there a vaporizer in the house? Ask your aunt. I prefer a warm air -- but a cool air will do. Either will loosen the congestion and help you to breathe. Close your door so the "steam/vapor" will stay in YOUR room.

If they don't have a vaporizer -- ask them to GET one -- until then, go into the bathroom, shut the door, turn on the shower -- hot water full blast, and sit on the toilet and breathe the steam for 10 to 15 minutes. Then, blow your nose to get as much junk out as possible. Once you are clearer, go take a nap.

Hey guys thank you all for your contributions. I have a question; is clindamyacin on the list were not allowed to take? I started it last night and in now having trouble breathing and am very weak.

Hey Tyson,

Sorry you're still having a lot of problems with the persistant sinus infection....

I googled that antibiotic and Myasthenia Gravis and it seems to be pretty contraindicated...It seems to result in severe weakness...It's the first med. on the list for medications to avoid if you have MG...

http://findarticles.com/p/articles/m...18607037/pg_6/

I'm not sure why this was prescribed to you (well, I know why), but it seems to be very dangerous....Are you able to get in touch with your doctor if you're feeling very weak today after starting this med., and since people with MG are not supposed to take this med.?

Please take care....

P.S. Jana's idea about vaporizers is a really good one...

From the "Drugs to Avoid List" put out by the MG Association of B.C.
http://www.myastheniagravis.ca/id14.html

ANTI-INFECTIVES
Aminoglycosides; including Amikacin, Gentamycin, Kanamycin, Neomycin, Netilmicin Sulfate, Paromomycin, Streptomycin, Tobramycin.
Ampicillin, Azithromycin (Zithromax) Bacitracin, Ciprofloxacin, Clindamycin, Colistin Sulfate, Colistimethate (Coly-mycin M) Erythromycin, Imipenem (Primaxin), Lincomycin, Metronidazole (Flagyl) Polymyxin A, Polymyxin B, Pyrantel Pamoate, Sulfonamides, Tetracyclines including Doxycycline (Vibramycin) Vancomycin, Viomycin.

Thanks nicky and Jana..I didn't think I could take it. I even asked the doctor to double check this.

I called my neuro crisis number and am waiting to hear back. Should I go to the er so that I can get fluids?

The thing is that it's not like a person with MG absolutely can't take these meds.. If a person had a really bad/persistant infection (like you), it might be reasonable to prescribe this antibiotic, but you'd probably have to be in a hospital, or somewhere where the doctor could supervise you to make sure that your weakness isn't made worse, which is a really plausible possibility.

When I started prednisone, it was high-dose and it was started while I was in the hospital to make sure I didn't get worse (which I did, and continued to do badly during the whole course of the treatment).

Sorry...I'm babbling...If you've noticed a spike in your weakness, or you're just feeling very weak for whatever reason, and for however long, I'd say that you need to be somewhere where you can be monitored in order to ensure you don't get *too* weak. Besides, if you've noticed any increased weakness, no matter what the level, and since this med. is on the warning list for MGers, you probably should get started on a different antibiotic, or just be in the hospital to be watched (if you have to take this in order to get rid of the infection you have)...

My blood pressure is also now dropping and it's concentrating on breathing. And I'm very weak. Uhhh!

Did you call the doctor/ER? How low is your BP?

What are your guardians saying to do?

Well it's now 138/48. My diastolic is never this low. Usually 80. I'm waiting on my neuro crisis line to call back. I'm feeling so weak. I think it's time to go in

Tyson, I have to admit that I'm disturbed by the fact that you have to come here in order to get advice you should be getting from your doctors. No offense, guys, but what can we do other than give support?

You can drink fluids faster at home than having an IV stuck in your arm and having them tubed in. And it costs a lot less.

Some people can do just fine on Clindamycin. Everyone is different in what drugs they can take on the "relatively contraindicated" drug list. If you get worse, you need to tell your doctor that.

I actually think you are on the road to a drug intoxication/overdose. You are self-medicating with over-the-counter drugs without knowing how they interact with all the other drugs you are taking. You are taking way too many Ibuprofen and that may not even be the best drug for you to be taking. Have you tried acetaminophen? That isn't benign either, in combo with other drugs. Do you drink alcohol? Not a good idea if you do.

On one hand, you act like everything is fine and go do an internship at Duke and other the other, you end up getting much worse and needing urgent help. Could you be in a bit of denial about your disease?

I don't think any of what you are going through is funny. I know you want to "trust" doctors but they are not perfect. You need a doctor who will pull all of this together for you (a good internist) and not stop until they figure out what is going on. I'm seriously afraid of something bad happening to you due to all these drugs. You know how dangerous they can be.

I hope you will work with your doctors to get the help you need.

Annie

Annie- Honestly, i found this message pretty rude. THATS WHAT YOU CAN give me, is support, and ideas. Clindamycin DID make me worse, AND I did go into the er. They sent me home and told me to start another antibiotic.

Im very weak, and tired, so sorry if im coming across as rude, i dont mean to.

Im not self medicating, NO ONE is doing anything about my headaches, so i took something to make it go away, thats doing what needs to be done.


But im not doing it anymore, because i know its harmful.

Goodnight.

I'm sorry you took offense to what I said. If you reread it again, you will know that I am frustrated beyond belief with your DOCTORS. I have always given you support. I'm not exactly in a great spot right now either - so how about you realize that all of us here are having a tough time one way or another and doing the best we can?

Tyson,

Are you willing to keep a journal?

A journal that would honestly record what medicines (ALL of them including the OTC and script) you take each day -by dosage and time of day?

A journal that would record 'I felt so good today I played soccer' followed by 'I felt so bad today I couldn't go to school or couldn't babysit' etc.

You - who are doing an internship at Duke and who have been accepted at your dream premed college - are either incapable (not likely) or unwilling (quite likely) to analytically evaluate your own situation. And you may well be the only one who can since you have no central doc coordinating all the other docs.

Try evaluating your medical situation as you might one of your future patients. The journal should help you to logically look at 'cause and effect'. One side of you can not accept the limitations of your condition. But I suspect the analytic side is more than equipped to evaluate and discover the realities - whatever they may be.

Keep a journal for a month. Anything that you would consult a doctor or this forum for should become a notation, in addition to all chemicals ingested, all activities engaged in, and a comprehensive notation of which and how many hours slept....DAILY. Come up with a grading system to 'grade the day' for easy reference.

Don't cheat. At the end of a month - you may become the best diagnostician you will ever know. If not, you can use it for a case study in med school!!

Sue

Sue- I may try that, and see how it works. Especially with the summer coming up, and not having that much to do, or in a sense having more time.
Thanks for the suggestion:)
Though, i have kept a journal in the past, yet not about this. Thanks again.

Annie- Your telling me things, that you have NO idea about. I never said you gave me no support at any time, and it sucks that your having a bad time, and im sorry, and wish I could do something for you but everyone knows I cant, nor any one else. Im grateful for everything youve contributed to me, and will continue to be. Hope your doing okay.

To all- Im going to sign off this website for a while, try to cool things down. Lately it seems to be only bringing heat to the website:) So, while im gone, and i might not return, (haha sounds weird) please be safe and listen to your bodies.


Goodnight.

Tyson, All any of us can go by is what you have posted. No, there is no way I can possibly know your situation. But from what you have said, you aren't exactly getting the care you need. The symptoms you have described in the past would concern my internist, I can tell you that.

There's no need to cool off unless YOU need to. You have not done anything wrong. Conflict is not a bad thing; in fact, it happens every single day because we are all different. Some people don't like it and some people thrive on it. I'd rather avoid it and try to be happy and come to an understanding when conflict arises.

Frankly, I'm not doing okay. Not even close. This year has beaten me up in ways I can't even talk about. So, yeah, when you said what you did it really hurt. I've been there even when I haven't felt good cause I thought I might do some good. Now I'm feeling like it doesn't matter. Besides, there are a lot of other people here with great ideas and support.

You do what is good for you. I stand by what I say - your doctors are not holding up their end of the doctor-patient relationship, no matter what your age is.

:hug:
Annie

Tyson

I do hope you are feeling better today.

Intervention is needed here as it does not seem very fair for you to open a thread asking other members for advice and then getting upset with them for giving you their honest opinion

From what can be gathered by your posting here, it does seem that you are not in proper care, either from your guardians or by your doctors. That is the impression that is given by what you post here, and so it is understandable why members would show concern for you.

This is a support group, not a crisis center. When in crisis, you need to be at the ER or with doctors who are correctly treating you. Members here can offer you support, and share their own experience and knowledge, but they cannot provide you with the help you need in a crisis other than to tell you the sensible thing to do and that is to go to the ER. If your guardians wont take you, call an ambulance. If you feel your doctors are not treating you correctly, insist on a second opinion.

I do hope you will find the care you need, and also maybe reflect on just how much support you have received from others here.

Annie,

I just want to say that there are two completely different categories of things I am trying to learn from other people on this list. The first is medical. But the second is just as important: I want to learn how to be a fine human invalid (sorry if that word, "invalid," is too strong. I know we're all striving to be as independent as possible, but I am still in the "rapid decline" stage of my disease. I don't know where the bottom is going to be. I am trying to be ready for the worst.)

Anyway, you have no idea how formative it is for me to observe the way you, and other kind people here, take care of the rest of us even when you're so sick yourself. It opens my eyes. It sets up an ideal for me to strive for. It gives me hope that even if I get really sick, I can still put myself in service of other people, and live a life that's not completely centered around myself.

Honestly, Annie, you can't imagine how important that is to me. Life-changing, really. I think on some level I have a fear that, if my disease gets bad enough, I won't be me any more, or won't be a "real person" any more, or will be somehow removed from the ordinary community of human beings (I'm not expressing this well). To see from your example that that's not necessarily so means the world to me.

Abby

Abby, thanks for saying all these things. I, too, need this kind of support. I have had MG now for one year and I still haven't learned to deal with it and don't feel complete now or even like I am able to contribute to the community and everything I love.

I have lost my purpose in life and all my goals, I feel like I have almost nothing left. It makes me feel terrible about myself, in fact this past week I have been wallowing in self pity.

People like Annie set a wonderful example, to let me know that we can have MG and still help other people although maybe in different ways that before.

Honestly, your words brought tears to my eyes. Thank you for the reminder. Many people on this site give me hope and inspiration, and Annie is among the top in that list.

Thank you Annie.:hug: and thank you Abby:hug:, I really needed a little bit of hope right now and you gave it to me..

Tyson,

I have thought about you all night, hoping that you are feeling better...your situation reminds me of what happened to me as a kid, and I can't stop thinking about it. I want to tell you my story.

I was overmedicated for some minor thing when I was about 4, starting with antibiotics. The doctor gave me more and more medication as I got more and worse symptoms. They ("they" meaning all the specialists in the hospital, many doctors in the hospital treated me) removed my tonsils even thought there was nothing wrong with them hoping it would help me get better. I got allergic to everything they tested me for, every food, everything... They tried limiting my diet. They gave me so many shots that my muscles collapsed and I coudn't walk. Finally, they told my parents that I was slowly dying and they didn't understand what was wrong with me. I was taking lots of medications and my mom stopped counting the shots of different drugs I had received after about 200...

My parents (finally!) brought me to a new doctor after almost 2 years of being sick. The new doctor, Dr Wakefield (I will never forget that wonderful doctor)...gave me a checkup, started to look through a huge folder containing my medical records...and I remember his face turning red and he threw the folder and all the papers went everywhere. He was very angry, he made some comment similar to "how could they do this to you?". The conclusion was that all the medication I was taking was making me sick and that I had a yeast infection from over-medication. I stopped taking all those meds and took a short treatment for yeast infection and I was better within one week (With one exception - It took many years for my allergies to fade so that I am now only allergic to a few things.)

So, my point is...I wish someone like Annie had been around to point out that maybe I was taking too many medicines, to go get a second opinion. I am still angry about all these allergies I have now- most likely caused by all those drugs, and my drug sensitivity -again most likely caused by all those drugs.

Tyson, please consider the fact that your symptoms may be from too many medicines. I don't know what kind of doctor would be best to discuss this with, but I feel strongly that you are over-medicated or that the headaches and pains are caused by the Accutane, but I really don't know since I am not a doctor. I only want the best for you and worry about you. I feel like your doctors are missing something. I wanted to share my story so that you can know that doctors make mistakes and sometimes you need a completely new doctor and maybe even a new medical center.

Take care of yourself. We are here to support you when you need it.:hug:

Susan

My perceptions of this situation:
1. Tyson is a TEENAGER -- in the most DIFFICULT time in life -- emotionally, socially, physically -- even for kids who are perfectly HEALTHY.
2. Tyson is a teenage MALE -- who wants to have control of his life -- who isn't able to talk to other GUYS about his feelings.
3. Tyson is a teenage male ATHLETE -- unable to get rid of that excess "drive" because of the MG.
4. Tyson is not living with his MOM -- who would be nurturing, putting HIM first, holding his hand, soothing his feverish brow.
5. Tyson is in DENIAL -- he has a horrific disorder that he will have to live with for the REST of his life -- and he hasn't really even BEGUN to live.
6. You CANNOT "counsel" people over the internet -- face-to-face interaction IS required. You MUST be able to see reactions, read body language, hear changes of pitch in the voice, etc. -- as Tyson said, we have NO clue what is going on -- because HE isn't TELLING us everything -- and we cannot SEE him to gather more clues.
7. If Tyson's family loved him enough to get him out of an unhealthy situation (from what he told us) with his parents, I think that they love him enough to want him to "survive" MG.
8. Teenagers tell you what they WANT you to know. Tyson, if you are reading this -- I LOVE you sweetie, but I am GONNA tell the TRUTH!! Teenagers are often "manipulators". They "angle" the information to their best advantage. This is PART of the "growing up" process. Read any adolescent psychology textbook -- this is NORMAL!

Tyson has a therapist -- but, I suspect that he has been using this group to avoid confronting some issues that would be best served BY his therapist.

So, having said this -- again, I am NOT a doctor -- I am NOT a psychologist -- I have ONLY been a teacher and counselor. I have a Master's in Counseling -- Emphasis in Secondary Education (grades 7--12) I worked as a middle school and high school counselor for 9(?) years. I do NOT want ANY harm to come to Tyson -- I have grown to love him dearly -- as if he is one of my own students.

Alright, all. I hope this will be my last post yet i feel as though I cant leave this thread like this.

Annie- I NEVER said you should now what is going on. I MAY not be getting the care I need from my doctors. MY aunt and uncle are finally doing what they should be doing. Im glad. Yet, YOU are saying that IM overmedicating, as are all these other people are who I think are completely wrong, they dont know my situation.
Sorry that what I said hurt you, but to me that is the truth, and im sorry if it made you very upset that was not my intentions, only my belief, and CHEMER, that is reasonable for me as well, you are not supporting my ideas so your being completely condradictory.

Annie again i did not mean to hurt your feelings, but im not sorry for what I said because it is what I feel.

CHEMAR- To me, this makes no sense. I came here for support, and I gave my honest answer back, and your ridiculing me for this. Which is fine, but you hardly ANY of you understand whats going on in my life, not saying is horrible or great, you just dont know, so saying that i need an intervention, is funny to me. You may think im a nieve 17 year old. But ive been through more as a 17 year old than many have at 40-50.

So, please if you you dont know my story completely try to judge me.

Desertflower- Thanks for that story, yet ive talked to my doctor about over medicating and they all say no to this. Maybe when i go to college and am forced to get a new doctor things will come out as that, and ill let you all know of this. Thank you very much for your help, and ive given in to the idea that my problems are from medications, and im okay with that.


Jana- THANK YOU a million times. IM glad someone on here seems to understand what its like to be a teenager dealing with this at this time. I know many of you have talked about what its like in the past, but right now, its when i needed you all to realize.
Although I dont agree with some of you post, such as the manipulation piece and denial piece. I talk about everything with my therapist and i know thats hard to believe but its true.
But thank you again for everything youve said here. Youve really captured everything im thinking.


After my ER visit i was put on doxycycline and had all the clindamycin drained out.

thanks again for everything.

Tyson, I am not sure where you find in my post that I ridiculed you? not at all!
I suggested that it was unfair to ask people for their opinions and then get upset at them for giving them

people can only base their perception of your situation on what *you* post about it

you have left most of us with the perception that you are often very sick and in crisis and that your doctors and your guardians dont take it seriously



I have a son with chronic illness, now 20yo and so I know what it is to be young and sick

the overwhelming attitude of everyone here has been to support you and offer you as much advice as they could to try to help you.

I know I speak for all that we hope you will find healing and the best care possible

I am locking this thread now as perhaps all has been said that can be