I'm Crying
 

I'm just so frustrated and sad. I've had MG for 14 years and most of them I can say that the disease was under control. But after almost 4 years of it being under control with CellCept, Mestinon and IVIG treatments now I have come across something that I didn't expect would happen. I just had 4 courses of IVIG, which used to be my wonder drug, and now the weakness is back again. I've increased my CellCept from 2000 mg to 2500 mg and I swear it is making me feel so sick that I am about to tell my Neuro I want to decrease it again. This last IVIG was with a different brand and for some reason my white blood count was higher than normal so I am not sure if I have something else going on or not. That has never happened before either.My Primary Care docotor is running additional blood tests to see if there is something else going on. I just feel sooooo crappy.

I'm so sad and scared. I have been trying to avoid Prednisone and now I am faced with the fact that I will more than likely have to go ahead and get on it.I'm so scared of it because I have been told that you get so much worse before you get better. I have never had to be put on a vent and I am afraid that if I start Prednisone that it will make me worse and that will happen.

I can't stop crying and don't know what to do. I don't know why my current treatment plan has stopped working. I just don't know why it stopped.

I completely understand...
 

I am also going through a similar situation. IVIG IS working for me at this point and I am extremely grateful for that.

I had an infection kick me into full MG mode, after several years of holding my own (with Imuran and Mestinon). Two years later, I am still not as I was.

Has your neuro considered plasmapheresis before giving you IVIG ?

At the beginning of the summer, my neuro ordered plasmapheresis, immediately followed by a large IVIG dose. A few weeks later, I had another large dose of IVIG and that got me through the summer.

I also have asthma & have taken Prednisone for that,as well as MG. I start on a low, every other day dose & work up (which seems to be the opposite of what most neuros do, for some odd reason). My neuro tried this for me & it has worked out much better.

This place is wonderful for support. I am so glad you have decided to post here.

Jenna

Shari, Jenna has some good suggestions.

I am so sorry you are not doing well. I know people who have maxed out the drugs and aren't well. It's like you aren't sure if it'll be the drugs or the MG that'll make you feel worse.

One thing you should make sure of is whether or not something else is making your MG worse, like electrolyte imbalances or thyroid or hidden infection (because of the higher white count). An internist can check all that out.

When you are immunosuppressed, it's hard to determine if you have an infection. They can run the erythrocyte sedimentation rate too, in addition to the white blood cell count. It's not a specific test but can send them in other directions.

I can't do the drugs you are on, for a few reasons. I have to manage with Mestinon and rest. The day after going to my niece's wedding, my body is horrid and my oxygen stats are low 90's. I know how frustrating it is to not feel well, not be able to do things and, on top of that in your case, have the drugs that are supposed to help you fail at doing that.

Is there even the slightest possibility that the drugs are working and that you may be overdosing on the Mestinon? Your neuro can figure that out.

I think all of us have those times where we can't stop crying because of what this damn disease does to our lives and bodies. And sometimes we can be too tired to fight to get ourselves better. I hope you can get your doctors and family/friends to help you out. It's times like the one you are going through when we need all the extra help and support we can get.

I really hope you can stabilize your MG soon. Again, I'm sorry things are so hard right now. It can get better though!

Annie

:grouphug: Shari :grouphug: I know how you feel as I was in complete remission for 17 years and now my MG is back but I can't take any medications for it {due to allergies} so rest and meditation are my medications. Try not to stress to much because as we all know stress makes our MG worse. Plus it is summer and we all suffer more in the summer. Talk to your Dr. Plasma exchange may help you for a while. {I am even thinking of trying it again} We are here for you.

Thanks everyone. I really, really appreciate all the responses. I wanted to post earlier but didn't want to seem like I was being a baby.

My Neuro sent me to my Internist on Friday for more blood tests since the blood test results after the last IVIG were a little wacky. Usually I use Octogam and that has always caused my Phosphorus to dip real low (1.4 or so) and that would be the only thing that would be abnormal. I have been on phosphorus pills daily for that but this time when I used Gammunex, my phosphorus stayed normal and other levels were out of wack (white blood count, sodium, showed anemia for the first time and a few other things). I don't usually experience what I am right now so soon after the IVIG's so that has really made me concerned. Does one brand differ that much from the others? The Neuro team in the hospital mentioned Plasmaphersis but didn't do it. I've never had that done either and not sure about it. It seems so scary to me but if that is what needs to be done then I'll do it.


I am also feeling very cold and my temperature is staying around 97 or even lower, sometimes 96.8 . Does that make any sense? This is such a big old mess right now. I just feel so sick all over, without the temperature that comes with a flu.

I am trying to be as normal as possible for my kids but it is getting hard and they are starting to worry about me. They are used to me feeling good or if I had a little flare up, it would just be for a little while and I would be back on my feet. Now I am laying down more than I am up. Thank God for my husband. Unfortunately I am getting to the point that I want him home with me almost all the time just for the security. I feel ridiculous, I am a 43 year old woman who is going back to being a sick little child. I keep trying to tell myself that I have been through this before in the past and it eventually got better. But of course that isn't working as well as it should.

Okay, I'm done for now. Thanks for letting me vent everyone. I forgot how much better you feel when you have others that know what you are going through.


Joanmarie63,
I wanted to try meditation. Can you suggest any good CD's or something?

Have you had your thyroid levels checked? My body temp was 96/97 and it turned out my thyroid was way to low. {beware if they put you on thyroid meds, it takes a while for your body to adjust}

As for meditation, actually I use no tapes, I sit is a quite room and try to listen for the wind and believe it or not that works for me.

Joanmarie63,
I think I'll be listening for the wind in a few minutes. I need to calm myself down, I am too worked up over this relapse. I just had a complete physical including bloodwork a couple of weeks ago before I went into the hospital. Would something have shown up in regards to my thyroid during that blood test or would I have to specifically ask them for a thyroid check? Come to think of it, I still haven't received any of the results.




Also, another question for those who take Vitamin B12. I took my first one yesterday and the energy it gave me was a little scary. I know that sounds weird seing how you would think that I would want all the energy I can get with my MG bothering me so much right now. It was just a very different feeling that is hard to explain.

What milligram should be taken 500 or 1000?

Turn off the TV, radio or anything else and turn off the lights, find a comfy spot and close your eyes, then "listen for the wind" it really does help me. {I even know someone who listens for Angels} do what works for you.

As for your thyroid your G.P. should have ordered that test of the thyroid. It is a simple blood test. Whoever did your last blood work, call them and ask if they checked it, if not then ask them to do so.

Keep us updated :)

Joanmarie is right meditation is wonderful, when you can learn to do it, you can relax to the point of a floating feeling. I have used this in the past, they have cd's of wind, ocean, whatever is your thing to relax by!
I share in your sadness with you, the doctors always seem to keep us going though, they will come through for you.

Mary

Shari, Your temp can also go low from being dehydrated, which can happen after IVIG. Are you drinking enough water? Do you have a blood pressure cuff? The other "stat" that goes low is BP if you are dehydrated. When you have IVIG, first you have an influx of fluid then you can become dehydrated afterwards.

Are you taking a B Complex or B12 by itself? What kind of B12? Tablet or sublingual (under the tongue)? I take the 5000 mcg. per day but that is because I have damage from my B12 deficiency. Most people take 1000 mcg. a day. It should not cause you to feel weirdly energized unless what you are taking contains caffeine! ;)

You would have to ask for the specific thyroid tests, which can include TSH, T4, Free T4, T3 and thyroid antibodies.

I actually saw a woman years ago who did meditation. After a few sessions, I was able to put myself into such a deep state of meditation that it felt like my body was floating! If you can find someone to help you with guided imagery or different techniques to destress, please do! It's a rather useful skill to have. You can try this one: Lie down or sit with your eyes closed. Pretend you are either a leaf on a tree in a beautiful garden or a feather from a bird on a beach. Count backwards from 20 SLOWLY and imagine yourself drifting down to the ground. Think about how a leaf or feather floats down to the ground, back and forth sort of rhythmically.

Get copies of those test results! I hope you can feel better soon.

Annie

Hi Shari
 

just to let you know Im thinking of you.

I dont have any experience of the treatments that you have recieved. But as you have already found out if one of us can't answer a question, theres bound to be others that can!

Welcome to the Forum.

Love
Rach

AnnieB3,
I usually drink so much water before during and after the IVIG's that I am constantly running to the bathroom! I haven't drunk much water over the past few days or eaten much at all because I feel so sicky. I guess I need to start drinking more water again. I don't have a blood pressure cuff but was planning on getting one asap. I take blood pressure medication that has been adjusted again and my doc told me to get one so I check it often.

I bought just the B-12 by itself. I actually bought two bottles one 500mcg and the other is 1000mcg because I wasn't sure which one to get. I took the 500mcg the day before yesterday and the 1000mcg yesterday. Now that I look at the bottles, the 500mcg bottle says that it is Natural and the 1000mcg bottle doesn't say that. I don't see caffiene listed as an ingredient but there is a lot of other things in it that isn't listed on the 500mg pill bottle. I'll have to find a 1000mcg natural pill because I really felt a little too strange with the pill I took yesterday and I didn't like it. I could just be sensitive to everything both physically and mentally right now because of the state I am in. I don't know.

I do know that I need to start meditating because I am only going to make myself worse if I don't calm down. I forget how to handle MG when it stirs back up again after being under control for so long. I just hate when this happens.

Thanks everyone and I'm sure you will hear from me quite often.

Thanks Rach :)

Okay Annie,
I have been drinking quite a bit of water since I read your post and decided to check my temperature a few minutes ago...... It is back up from 96.8 to 98.4 and I don't feel as yucky as I did earlier.

I just wish water could work like that on MG too!

Thanks for bringing up the hydration issue :hug:

Shari,

Go to www.iherb.com There you will find methylcobalamin sublingual tabs and they are cheaper than in the stores. I use Source Naturals. Some people really like the Jarrow brand.

Good, I'm glad your temp went up. I had diabetes insipidus (water, not sugar diabetes) and that's why I know about pulse/BP, temp and dehydration. Dehydration can make you feel like total crap too.

Annie

Thanks for the link Annie,
You were right about the prices, they are much cheaper. I went with the Jarrow Formula and placed my order to include several bottles so I should have enough to last me for quite some time. I read the reviews for that product while I was there and it looks like many people agree with you. This is only my second day of taking the 500mcg B-12 pill that I have here and I do feel a difference in my energy. I can only imagine how much better I will feel when I take the 1000mcg when it arrives. I've never taken something that dissolves under my tongue before so I hope it doesn't have a nasty taste to it.

Hi Shari!
 

Oh sweetie I am so sorry you feel like this. It just sucks!

MG can be so very lonely. That is why I love this site. It has helped more than any meds I have ever taken.

Know that you are in my thoughts and prayers.

Love,
Erin:hug:

Thanks Erin,
Today is one of those not so good days for me :( . Yesterday was much better and of course when you feel better, you get more hopeful that the next day will be the same. My son has his first tennis tournament game today so I am trying to muster up all the strength I can so I can go and support him.