MCAS and IGG Treatment-The Journey Begins Again.

[Misfit Toy]

@Misfit Toy I just sent you a msg and am so sorry that you are having such a hard time

Thank you, Ginger. I thank you for your message and for reaching out to me. Much love and ty so much!

 

[Misfit Toy]

So, Dr. M charged me $100 for my emergency phone call. I wrote her an email saying that I am being charged for things I didn't know I was going to be charged for, or how much it would be. There was never any paper given stating that I would be charged.

I wrote her and told her I didn't think it was right and that I needed to know pricing from here on out. I am on the fence about her in general. I am just not sure and I am in withdrawal from steroids and can't think which makes it that....much...harder.

She wrote me back last night at like 2 am. Telling me that she cancelled the charge, which I was grateful for but that she has to be paid for her time of talking to my doctor or other things like emails, etc. It's expensive and I am on a fixed income so it makes me nervous.

I did let her know that IGG is on hold until I find out more info from my endocrinologist but I for some reason doubt anything is even going to come back wrong with my adrenals even though all I am doing is sleeping. I just don't trust blood work and the fact that she ordered TSH when I am on T3 only I find oh so baffling. Adrenal testing is a moment in time and that is the problem. That is why saliva testing does make sense.

Having said that, I have done horrible on steroids. Absolutely awful and I am now almost off them and feeling...horrible. I have been in a fog on them for months. I have gotten some things done more, and other things not so much. On medrol I became super creative so made a ton of jewelry but stopped paying my bills. Almost like some kind of manic episode really, without the fun of mania.

On prednisone, all I do is sleep. So clearly, I am not doing well on steroids along with all of my other sensitivities.

Maitland wrote back saying, "I do not want you to do IGG until we can figure out a way to calm down the inflammation going on." WOW. Yes, but how. I agree, but how.

I have Sjogrens. There is inflammation. I am also thinking I may have EDS. I am double jointed.

I am in a lot of pain today. A lot. The steroids took away most pain and I am talking only 2 mg. Now, it's in full force.

I applied for a handicapped placard today. Very hard to do and yet so much freedom with one. I am disabled. It is what it is.

I am mostly sleeping, or not sleeping or doing stuff at home and not going out. So, I am mostly home. I have to go out to get groceries and for whatever reason, I can go at night as my energy is higher. During the day, when I take prednisone I want to sleep. At night, I have energy and go.

I am also spotting, so my whole system is a mess.

 

[Gingergrrl]

She wrote me back last night at like 2 am. Telling me that she cancelled the charge, which I was grateful for but that she has to be paid for her time of talking to my doctor or other things like emails, etc. It's expensive and I am on a fixed income so it makes me nervous.

Can Dr. Maitland give you a break-down of what she charges for phone calls, consultation fees with other doctors, etc, so you know in advance and not caught off guard (and then you can decide if you feel it is worth it)?

I did let her know that IGG is on hold until I find out more info from my endocrinologist

I think this is a good plan.

That is why saliva testing does make sense.

Can you do the 24-hour Cortisol saliva testing? I did it in 2014 and my numbers were fairly low. But I can't do it again b/c I take Cortef (since mid 2015) and the numbers would not be reliable.

I applied for a handicapped placard today. Very hard to do and yet so much freedom with one. I am disabled. It is what it is.

I've had a disabled placard since 2014 even though I could not drive and my husband/family or friends used it when they drove me anywhere and pushed me in the wheelchair. Now that I can drive again, it is worth it's weight in gold b/c I can still only walk short distances. It allows you to park at meters for free and is extremely helpful. There is nothing to be ashamed of about having it if you truly need it! Without the wheelchair and placard, I would've been 100% homebound the last 3.5 yrs vs. being able to go out most days.

I am also spotting, so my whole system is a mess.

Do you have a good ob-gyn who can consult with your new Endo? Or can the Endo test all of your female hormones? My Endo said that I had "premature ovarian failure" from autoimmunity and was why I was not able to get pregnant (about 6-7 yrs ago, not now ).

 

[Misfit Toy]

Can you do the 24-hour Cortisol saliva testing? I did it in 2014 and my numbers were fairly low. But I can't do it again b/c I take Cortef (since mid 2015) and the numbers would not be reliable.

I haven't done it in a year. I was just hoping she could shed some light on why I am so tired and weak all of the time and dizzy. I emailed her the other day about what time should I do the test and there has been no response. I just don't have a good feeling. The thing I really wanted help with since she is an adrenal specialist, is medication.

I need help with what to take or do. MY doc isn't really offering anything unless I come out and say, "can I try this?"

She never tested my hormones which is also strange. I do not have a good obgyn. I need one, but I am so over doctors and trust none of them anymore. They never KNOW ANYTHING.

Can Dr. Maitland give you a break-down of what she charges for phone calls, consultation fees with other doctors, etc, so you know in advance and not caught off guard (and then you can decide if you feel it is worth it)?

So, she sort of decides as she goes along it seems. Another patient of hers told me she charge her $400 for 45 minutes to talk to her about her 3 children who all have EDS. She got no real answers and couldn't spend that much time on each one, but charged that. Maybe that is normal. I am not sure.

I am sitting here and just feeling really overwhelmed and like the more I try and understand something or figure it out, the more I can't think. I am exhausted and have not really slept since lowering the steroids. I am wiped out and in pain now from the withdrawal.

I guess an answer will come eventually for me.

I was told I have premature ovarian failure and then my periods came back! What an awful thing. Autoimmunity. Ginger, is that a disease or what is the AI caused from? An autoimmune disorder or was it the mold?

 

[Gingergrrl]

Hi MT, I just wanted to say if I abruptly stop replying it is b/c my sister arrived and we left to take my dog to boarding. She should be here in the next 20 min. But I'll be back later tonight

I haven't done it in a year. I was just hoping she could shed some light on why I am so tired and weak all of the time and dizzy. I emailed her the other day about what time should I do the test and there has been no response. I just don't have a good feeling. The thing I really wanted help with since she is an adrenal specialist, is medication.

I think you are referring to e-mailing your new Endo (not Maitland?) but if I remember correctly from when I did the 24-hour saliva Cortisol test in 2014, it was four vials and you collected the saliva at intervals throughout the day up until midnight and then kept in fridge (or freezer, I can't remember?) and then mailed it all together. There were special instructions and rule-outs (like taking Cortef) which is why I can't do this test again. But your Endo should be able to explain it.

She never tested my hormones which is also strange. I do not have a good obgyn. I need one, but I am so over doctors and trust none of them anymore. They never KNOW ANYTHING.

How weird that an Endo did not test your hormone levels! I do not have a good ob-gyn either. I have someone who is adequate for a yearly exam but if I had a more complex problem (which thank God right now, I don't), I'd find someone else.

Another patient of hers told me she charge her $400 for 45 minutes

That is a bit expensive but most of the MCAS specialists are. I am very lucky that I see my MCAS doctor in person and he actually accepts my insurance so it is really cheap. Vs. my Endo does not take any insurance and is $330 per office visit (but he is good and I only see him 2-3x a year for thyroid/hormone monitoring and just pay it).

I am sitting here and just feeling really overwhelmed and like the more I try and understand something or figure it out, the more I can't think.

Can you take a break from thinking about it until after the weekend?

I was told I have premature ovarian failure and then my periods came back! What an awful thing. Autoimmunity. Ginger, is that a disease or what is the AI caused from? An autoimmune disorder or was it the mold?

My periods never stopped (sorry if TMI ) vs. I was told by my Endo that I had premature ovarian failure based on my hormone levels on blood tests. He said for my age, the numbers should have been different and he surmised that this is part of why I was not able to get pregnant (about 6-7 yrs ago) when my husband and I saw several fertility specialists. My Endo said it was due to autoimmunity (in general) based on my other blood tests but he did not identify a specific autoantibody causing it (unless I am forgetting). I don't know what role the mold played in this specific issue but it definitely played a role in pushing me into autoimmunity in general.

 

[Misfit Toy]

I think you are referring to e-mailing your new Endo (not Maitland?) but if I remember correctly from when I did the 24-hour saliva Cortisol test in 2014, it was four vials and you collected the saliva at intervals throughout the day up until midnight and then kept in fridge (or freezer, I can't remember?) and then mailed it all together. There were special instructions and rule-outs (like taking Cortef) which is why I can't do this test again. But your Endo should be able to explain it.

Yes, endocrinologists here do not believe in this. They only believe in blood work. I have done this one several times. But not this year. And like you said, I can't do it now due to me having been on steroids and I am still on them. I met my new endocrinologist now Maitland. I am so fogged out. Sorry! I wrote that and took a two hour nap.

Can you take a break from thinking about it until after the weekend?

I am hoping I can. I feel like I have to solve it for some reason. I have become housebound (which I know many are) and in bed since I got my period, had the IGG and then the medrol and now going off of steroids. I spend a lot of time in bed or alone, but this has been extreme so that is why I have suddenly become like desperate to solve my situation, which is not possible.

Okay, autoimmunity. I have just never heard it like that. I totally believe you. I am just so used to hearing, you have AI that came back positive for this. But I am sure you can just have it and not know what is the type of autoimmunity.

Ginger, don't even worry about responding. Just take care of you. I am so glad K will be with you in case you are not well, but even more so to just have a friend around. That sounds so nice. So you can be sick but have an understanding friend. Perfect!!

 

[Gingergrrl]

Yes, endocrinologists here do not believe in this. They only believe in blood work.

I agree and most Endo's only want the blood work and not the saliva test. Mine is luckily a little more open-minded with this stuff.

I am hoping I can. I feel like I have to solve it for some reason.

I totally relate to this and until I found my current treatment plan in 2016, I spent 24/7 day and night trying to figure out what was wrong with me and what to do about it.

Okay, autoimmunity. I have just never heard it like that. I totally believe you. I am just so used to hearing, you have AI that came back positive for this. But I am sure you can just have it and not know what is the type of autoimmunity.

I probably did not explain it well and was using autoimmunity as the generic term or mechanism for what was going on (similar to using immunocompromised as the generic but opposite term). In my case, I have some autoantibodies that attach to a specific disease (like Hashimoto's and POTS) and others that are random like the calcium channel autoantibody or anti GAD65. They link to specific illnesses but I do not meet full criteria for them. My entire system was in autoimmune chaos from all of these autoantibodies (both those that linked to a known disease and those that don't YET). My Endo said the premature ovarian failure was due to my overall autoimmunity but I don't know much beyond that and just took his word for it.

Ginger, don't even worry about responding. Just take care of you. I am so glad K will be with you in case you are not well, but even more so to just have a friend around. That sounds so nice. So you can be sick but have an understanding friend. Perfect!!

I will get off the computer shortly and start packing up for my infusion tomorrow. Am just going to update the thread about my doggie. I hope you are able to rest this weekend my friend

 

[Misfit Toy]

@Gingergrrl -good luck tomorrow!! Will be thinking about you.

 

[Misfit Toy]

Just writing that I had to go back on the steroids. I am so sick and all muscles were twitching and there has been no sleep and my neck has been killing me. I mean searing pain. I was in touch with my rheumatoid doc and he said to go back on prednisone to at least 2 mg.

The endo had said the same thing but I just decided I didn't want to be on them anymore and went down to only 1 mg and became sick. I never thought a 1 mg difference could make me so sick but I guess so.

I am very upset about my neck. Is my neck really hurting that much I think or is it the steroid withdrawal. I could not live with my neck hurting that much.

It's dreadful. Back up I went.

I so hope I get sleep soon. Rest and sleep. I need rest. I am so tired. It's been horrible. I wish I had never had that epidural. It has caused so much distress but who's to say this wouldn't happen anyway.

 

[Gingergrrl]

@Gingergrrl -good luck tomorrow!! Will be thinking about you.

Thank you so much and sorry to have been out of touch the last 24 hrs or so.

Just writing that I had to go back on the steroids. I am so sick and all muscles were twitching and there has been no sleep and my neck has been killing me. I mean searing pain. I was in touch with my rheumatoid doc and he said to go back on prednisone to at least 2 mg.

I think it is okay that you went back up on the Prednisone and you may need a REALLY slow taper, like shaving off a crumb of a pill just once a week.

I never thought a 1 mg difference could make me so sick but I guess so.

It really can and my two prior attempts at tapering off Cortef were complete failures and almost triggered an adrenal crisis per my Endo. So for now, I stay on Cortef, even though I hate it and have been on it for over 3 yrs. I will be seeing my Endo next week and plan to discuss this again. He said the taper, if it is even possible at this point, would probably take me an entire year.

I am very upset about my neck. Is my neck really hurting that much I think or is it the steroid withdrawal. I could not live with my neck hurting that much.

I am sorry about your neck and really relate to this one b/c I've had chronic neck pain for years. Sometimes it is very slight and in the background but other times, very severe.

I so hope I get sleep soon. Rest and sleep. I need rest. I am so tired. It's been horrible.

I hope you were able to sleep. I know the Prednisone makes you tired/sedated but I wonder if it is keeping your brain awake where you are not actually getting any Stage 4 sleep?

 

[Misfit Toy]

@Gingergrrl -take care of YOU. I had to go to the ER yesterday and it ended up being a mess. I am home after a crazy time and situation. I wrote about it on S4ME. Don't read it now.

I hope you are not too sick. I hope you are resting.

TY..

 

[Gingergrrl]

@Gingergrrl -take care of YOU. I had to go to the ER yesterday and it ended up being a mess. I am home after a crazy time and situation. I wrote about it on S4ME. Don't read it now. I hope you are not too sick. I hope you are resting.

I am not sick and I don't get the side effects from Ritux like I do with IVIG. I read your post on the other board and will reply to you privately later but posted a song/video for you (over there). I am so sorry about everything you went through last night, that is awful. Hoping you are sleeping now and please do not worry about replying here.

I really hope you will do a VERY slow steroid taper moving forward, like I will eventually do with the Cortef (some day). I know you want to come off of it asap but you need to do it safely. I also would not do more IGG until you figure out a solid plan for the steroid taper. I hope I am not sounding too bossy vs. someone who cares about you and wants you to be safe and to feel better.

 

[Misfit Toy]

@Gingergrrl - I am so glad you are not sick! That makes me happy. I have not once ever...ever thought you were or are bossy. Never.

I will not do more IGG. I can't.

 

[Gingergrrl]

@Gingergrrl - I am so glad you are not sick! That makes me happy. I have not once ever...ever thought you were or are bossy. Never. I will not do more IGG. I can't.

Thanks and I know you have been through hell the last few weeks and are getting a lot of feedback from different doctors and boards, etc, and would never want to add to the confusion!

My thought was if there was a way to find one doctor who could closely monitor your taper off Prednisone and then do a VERY slow taper, that is probably the best plan. Vs. going up and down on it (or stopping and starting it?) which is causing so many mood related symptoms and affecting your sleep and making you so sick. Would the new Endo be willing to do this when she gets back in town or is she waiting for test results first?

And I think you truly might still tolerate IGG at a future point, just not right now while you are trying to fix your adrenals and figure out a proper steroid taper.

 

[Misfit Toy]

Would the new Endo be willing to do this when she gets back in town or is she waiting for test results first?

The new endo..I don't think so. She is impossible to get a hold off. She will not see me for 3 months. I can call but I don't know. My doctor might know, but I am not sure.

I am toast right now. I am only on 8 mg of HC which is not much. I am on prednisone but that is the conversion.