[rockenmama]

Any thoughts? http://www.ncbi.nlm.nih.gov/ pubmed/11474561
If anyone is having any problems with the autonomic system I'd like to hear about their experience!

When I was in the ER the other night the doctor's thoughts was that I don't have a bunch of stuff going on I just have out of control MG. I think he's right. Now the the doctors know that some autonomic stuff seem to be going on and that has been confusing to them which has been holding off the whole MG diagnosis. Add on to the fact that things have been getting worse and I being a sick person not a doctor was starting to think I was having heart problems. Well things are starting to click. Thanks to my husband who finally is starting to listen to the things I've said and did a little research since I can't. Now I've been had this non stop headache for 3 weeks that they put me on Topamax at the hospital that's not getting any better. The problem with my stomach (more than likely my gut isn't moving things properly) that I've been on protonics for 2 months that don't touch it but I've only been having issue's since last hospital visit so about 2 weeks or so. My chest hurts non stop, even when I wake up which I take zantak as well for (also taking xtra strength tylenol on top of Topamax) my body can't regulate my temperature at all. My blood pressure is a mess because the autonomic system (pots) my PCP was thinking it might be MITO but I had seen this awhile ago but because my brain has been in energy conservation mode I forgot about it until my hubby brought it up. Anyway I have my compression socks on, legs are elevated and hopefully it will relieve some of the problems going on with the autonomic stuff going on so that my body can use stop using the precious energy on that and store it so I can hopefully get some stamina so I can do the work necessary to get out of this darn wheel chair I landed in. BTW I was an in my former life I was an ultra runner who's last race was 50 miles in March of 2012 and I did in 8 hours and 43 minutes. TOTALLY NOT to brag, because once you get to know me you'll know that's not the kind of person I am.
Any experience, knowledge etc when it comes to MG and the autonomic system would be greatly appreciated! I know it's rare, but the other options are MUCH even more rare.

Thanks

And hugs to everyone!



History so far for 2015
8 day in hospital 5 days of IVIG in Jan than to rehab hospital for 3 weeks than back to hospital for 6 days 5 days of IVIG than to rehab hospital for 2 weeks back home for 3 weeks then back in hospital for another 5 days if ivig and now home and its been about 11 days or so

[bluesfan]

Hi rockenmama
You have my empathy for what you are dealing with. I don't want to steer you in the wrong direction but what I'm finding may help your research.
I'm not sure if my autonomic system is mal-functioning or not - still waiting diagnosis but have been doing a lot of research myself. I have Addison's Disease - another auto-immune condition - as is MG - which I have been managing for 5 years, but I seem to be developing a secondary condition - neuropathy, headaches, chest/throat pain etc. To cut a long story short my research led me to a possibility of Vitamin B12 deficiency (had tests done last Thur - waiting results) I'll put in a link here to a video that was my 'AhHa' moment.
https://www.youtube.com/watch?v=BvEizypoyO0

There may be something in there that registers with you. If it does and you want to research further let me know and I'll post links to other sites I've found useful. Good luck with finding answers.

[rockenmama]

Originally Posted by bluesfan

Hi rockenmama
You have my empathy for what you are dealing with. I don't want to steer you in the wrong direction but what I'm finding may help your research.
I'm not sure if my autonomic system is mal-functioning or not - still waiting diagnosis but have been doing a lot of research myself. I have Addison's Disease - another auto-immune condition - as is MG - which I have been managing for 5 years, but I seem to be developing a secondary condition - neuropathy, headaches, chest/throat pain etc. To cut a long story short my research led me to a possibility of Vitamin B12 deficiency (had tests done last Thur - waiting results) I'll put in a link here to a video that was my 'AhHa' moment.
https://www.youtube.com/watch?v=BvEizypoyO0

There may be something in there that registers with you. If it does and you want to research further let me know and I'll post links to other sites I've found useful. Good luck with finding answers.

Thanks for your reply Bluesfan and I'm sorry you're going through all this! I've been dealing with neuropathy for over 2 years which REALLY confused clouded the picture for the neurologists. So right now I have the headache, throat,chest pain as well as gut problems. Also I can't sit for long. The longer I sit the more my head, chest hurts the more I feel like I'm ready to explode. I just want to get stable when my body is so physically stressed. I know they've checked my B12 levels and to my knowledge it's good. I know I have the numbers somewhere. Actually I think I've probably had the numbers checked several times over the past few months , because there was no way this was related to MG. But my PCP has started thinking maybe Mitochondria Disease. Well sorry I don't see having MG & Mitochondria disease. Autonomic stuff with MG may be rare but not as rare as MG AND Mito would be

Anyway thanks! I'll check the video out

[AnnieB3]

I'm sorry you've been through so much! I hope you're finding a way to cope with all of that trauma!

Here's the article you posted (the last part of it wasn't highlighted).

http://www.ncbi.nlm.nih.gov/pubmed/?term=11474561

That article describes Rach, who hasn't been here for a while. She has POTS, autonomic dysfunction/failure, and suspected MG.

I have to wonder if mutations occur with successive generations of those who have MG, that might cause autonomic failure.

Are you, and Bluesfan, of Northern European ancestry?

BTW, Bluesfan, I hope you do have a B12 deficiency, because it's so easily treated!

Rockenmama, Are you at Mayo or have you been? If not, and you are better and can travel, that would be a good thing to do. OR Johns Hopkins. The Cleveland Clinic is also a pretty good place for autonomic issues.

Actually, MG and mito are not uncommon, just not being investigated that much. There are articles on PubMed about that. There might even be a component of mito due to a biochemical pathway "kink." I wish they were further along with research in this area!

There are so many odd little diseases!

http://emedicine.medscape.com/article/1162238-overview

http://emedicine.medscape.com/article/1215103-clinical

I'm a bit busy right now or I'd give you more. Maybe later.

I really hope your docs put their thinking caps on. Sometimes, however, the answers are very simple.

Annie

[bluesfan]

Thanks AnnieB3
Yeah - I'm kind of hoping it's B12 deficiency as well as there is hope of reversing some of the recent damage. Some however may be irriversible as it may be due to an extremely late AD diagnosis (2010) which I suspect caused a small stroke. Still can't get them to check that as the Endocrinologist doesn't seem to consider the neurological aspect of Addison's as relevent.
I've been researching through MrsD's B12 sticky on the PN forum so am ready to start treatment but need the diagnostic tests first. My B12 serum numbers have always come back as in the 'normal' range but they have dropped by more than half over 5 years - enough to finally get my GP to investigate further.

Rockenmama your situation is also of interest to me as MG is one of the secondary conditions that can be associated with AD. I hope you're able to get the help you need as it sounds like a tough condition to deal with.

As for Northern European ancestry not sure - like many Kiwis I'm a mix of English, Irish, Scots but 4th generation NZ born. What is the significance?

[AnnieB3]

Yes, that's significant. That IS Northern European.

Have you been tested for celiac disease or pernicious anemia?

Yeah, don't accept the usual normal range, especially with symptoms! They should do homocysteine at least. Methylmalonic acid can be abnormal as well with a B12 deficiency.

Have you ever been tested for clotting disorders, such as Antiphospholipid antibody syndrome (APS)? It's rather common in those with other AIs.

Annie

[rockenmama]

Originally Posted by AnnieB3

I'm sorry you've been through so much! I hope you're finding a way to cope with all of that trauma!

Here's the article you posted (the last part of it wasn't highlighted).

http://www.ncbi.nlm.nih.gov/pubmed/?term=11474561

That article describes Rach, who hasn't been here for a while. She has POTS, autonomic dysfunction/failure, and suspected MG.

I have to wonder if mutations occur with successive generations of those who have MG, that might cause autonomic failure.

Are you, and Bluesfan, of Northern European ancestry?

BTW, Bluesfan, I hope you do have a B12 deficiency, because it's so easily treated!

Rockenmama, Are you at Mayo or have you been? If not, and you are better and can travel, that would be a good thing to do. OR Johns Hopkins. The Cleveland Clinic is also a pretty good place for autonomic issues.

Actually, MG and mito are not uncommon, just not being investigated that much. There are articles on PubMed about that. There might even be a component of mito due to a biochemical pathway "kink." I wish they were further along with research in this area!

There are so many odd little diseases!

http://emedicine.medscape.com/article/1162238-overview

http://emedicine.medscape.com/article/1215103-clinical

I'm a bit busy right now or I'd give you more. Maybe later.

I really hope your docs put their thinking caps on. Sometimes, however, the answers are very simple.

Annie

My Neuro is trying to get me into John Hopkins. I did find something that I really really can't believe I MAY be the one that or should I say my husband will be responsible in diagnosing Orthostatic_hypertension They've tested me for the opposite ( laying, sitting and standing and all three my blood pressure was not only high but got much higher each time) but the nurse who did it exclaimed well she's not Orthostatic hypotensive. It would explain why my head feels ready to explode when I sit for more than 5 minutes. Why my blood pressure is extremely high when they ask me to stand to take blood pressure ( my blood pressure is always high under any stress as of late but it's always higher if standing) And why I feel so misserable after sitting in wheelchair after waiting in waiting room at Physical Therapy and then can't get through therapy very well. I'm calling my Neuro first thing Monday morning. I don't thing they will be able to get my MG under control if they can't get everything going on with my autonomic system under control. The way I see it they will probably have to hospitalize me and give me IVIG and start with high doses of prednisone and finally get me started on an immunosuppressent of some sort. They can't just politely ask MG to go away apparently.

Thanks for the links! I'm going to check them out in a bit!!! YOU ARE SO RIGHT about so much!!! The human body is amazing and as many doctors who think they are gods, have NO RIGHT in thinking that! Mito stuff is in it's infancy. I should be getting my appointment in the next few days for my muscle biopsy just to make sure. I really hope it's all just MG because as bad as MG can be Mito is much scarier.


And I second the hope it's a B12 deficiency bluesfan! Still sucks but at least it's treatable!
Hugs!

[bluesfan]

Thanks - Coeliac, IFA, PCA, Serum B12 & Folate are the tests I had done Thur. Results due Tue. (Easter delay). Homosysteine & MMA can only be ordered by a specialist in NZ - have an e-mail into my Endo requesting appt. and on wait list to see a neurologist - possibly not til June. I haven't been tested for APS but thanks for mentioning it - I'll ask the endo.
Rockenmama - the hypertension sounds dreadful - I can't imagine dealing with that constantly - I'm normally hypo but was so exhausted and stressed when I saw my GP last week that my BP had gone very high - she was surprised enough to ask me if I was safe to drive home. I waited until my next dose of hydrocortisone was due before leaving town. (I have a 30 mile drive).
I'll think of you when I go for my results and hope you're getting some better news as well.