[Llonghair]

Hi, it has been a long time since I have been here. I was dx with MG in 2004. Then in 2005 I was dx with Celiac Disease.

Now my 83 year old mother was dx with MG last month. She is seronegative and NCT and EMG are negative but the tensilon test was slightly positive. Mom says she only talked better because she was lying down and it is easier to talk. She is not weak except for her mouth.

At first she was very horse then she started loosing control of her tongue and now she just has jumbled conversation. (Can not understand her at all) They ruled out stroke and she still is brain wise ok although dad notices more emotions...easier to cry and get angry. She was still active and played golf until the infusions started. She had a reaction to the infusion which caused back pain and chattery teeth. The stopped and gave her benadryl and then resumed.

Afterwards her blood pressure went up. She does take coumadin and something else for afib. She ended up in the hospital for a couple days till the BP was under control. They also started her on mestinon 20mg 2 x day. Dad said she got worse after the fusion and was having drooling problems.

They went back to the doctor and had her get a feeding tube put in her stomach and put her on prednisone 20mg 3 x day. Her feet swelled up for a day but seems better today. The doctor said he wasn't sure it was MG anymore and wants to send her to another neuro. She did do some cleaning yesterday on her hands and knees...cleaning her porch floor so she does have some energy.

Since I never took any of the MG drugs I don't know how they work. She has been on Mestinon for 3 weeks and 2 weeks prednisone and infusions 2 times about 3 or 4 weeks ago. Should she have seen some improvement?
Not being close by I am not able to talk to the doctor and my mother has wanted no outside interference with her treatment...but now that the doctor is giving up we are looking for ideas and suggestions.

Dad is going to get all the bloodwork so I can see what they have and have not done. He is also going to ask to see the doctor alone and has a list of tests to do if not yet done...I am thinking maybe thyroid could also be playing a part as her eyes are a little buggy according to my dad and sister. I do have a daughter that had Graves disease.

Any thoughts or ideas would be greatly appreciated.

[BackwardPawn]

I think getting a new doctor is probably the best idea. If this doctor doesn't know how to treat her and he's admitted it to you, its better to find someone who can (whether it turns out to be MG or something else).

[bny806]

I'm so sorry to hear your family is going through all of this!!!!

As far as seeing improvement by now.. it's hard to say... many people are tough cases that don't see improvement with so many treatments.. many people with MG don't respond to mestinon, many don't respond and even get worse with prednisone.. many don't respond well to IVIG either.. some require plamapheresis/plasma exchange, other immunosuppresants etc..

As for myself, I don't have a firm diagnosis, but I have something neuromuscular.. I had 3 days of IVIG inpatient.. and had very slight improvement (it also made me quite sick causing aspetic meningitis).. so I felt weak from the meningitis and was better, but not overwhelmingly so.. however the 2nd round of infusion (had 3 days in a row 1st round, then 3 weeks later had 1 day).. about 4 days after the infusion I felt cured.. though that feeling wore off with the IVIG.. from what I hear it takes many people several rounds to feel improvement, though they still might not feel any, as they just don't respond with it..

Otherwise, I always believe in 2nd and 3rd and even 4th opinions with such big issues, ESPECIALLY with neurology, as it seems to be very subjective, and nonconclusive ...I'm sorry yall have to go through this.. and sending her well wishes

[Llonghair]

Thanks BNY806 and BackwardPawn. It is good to get other thoughts on what to do and how people react to the MG drugs.

It is hard to deal with this being so many miles away. I would go down but Mom doesn't want visitors either...she is a very proud woman....I think she doesn't want anyone to see her like this.

[AnnieB3]

Hey, Llonghair. It has been a long time. I hope you're doing okay.

I'm sorry you can't be there to help out. You'd be a great advocate for your Mom after all you've been through.

By infusions, do you mean IVIG? Did she get enough fluids when she had it?

And you know what I'll say . . . get your Mom's B12 checked too! And know what the exact level is. Take a good look at her CBC, if she's had that done.

Have her kidney/liver functions been tested? Does she have any cardiac issues other than the AFib? Was the back pain a low, mid or upper pain?

So, she's still on Pred? If so, she should watch her salt intake. If they started it recently, she might not show improvement right away. Or it could be a slow, not drastic improvement. If she's still on it, I hope she is supplementing with calcium/magnesium/Vitamin D. And flax or olive oil (or nuts, if she can chew).

Does she still have a feeding tube? Why did they put one in?

Have they checked adrenal function? What about her thymus?

It might be a good idea to check all of the drugs she is on and any side effects or interactions with foods/drugs. An older body might not be able to handle drugs as well, which is one reason I asked about kidney/liver functions.

Does your Mom have obvious ptosis? Does she have lopsided ptosis, meaning sometimes one eyelid droops more than the other? If so, if a doctor pulls up on the drooping eyelid, that will go up and the other side will go down. They might go back and forth like that for a bit. It's called "enhanced ptosis" and can be one more clue that she has MG (because it's fatigable!).

Well, I hope you can figure some things out for your Mom. How are you doing?


Annie

[Llonghair]

Hi Annie...I am so glad to hear from you and yes I am doing great. I will try to post in another thread to let people know what has helped me.

How are you? I hope you are doing great and am so proud of you still helping people. You are right up there with MrsD, Anne and Cara from Glutenfree and Beyond...all angels in disguise!

Dad is planning to meet with doctor without mom and ask for all bloodwork and test results...then email to me so I can chart.

Answers to your questions:
1. Infusions are IVIG

2. B12 yes wondering what her level is and if she is absorbing. She is adding B12 2200 mcg to her feedings. Are her intestines absorbing the nutritional liquids she is tubing? She is only getting nestles tube feeding food ISO Source 1.5 CAL 3 x day and moving to 4 x day. It is Gluten Free so that is good!!

4. Also wondering about Folic acid as mom had 2 cleft palate babies. I gave dad a sheet I designed for people that think they might have Celiac Disease that has most tests that one should check for. I gave that to dad a few weeks ago but just resent and hope he gives to the doctor.

4. Reason for tube...can't swallow..lot of choking/drooling...vocal chords don't close properly...serious concern of pnemonia

5. I have been wanting mom/dad and sibs to get checked for Celiac...she has the DNA (both parents have DQ2 and Dad has DQ2 and DQ8) but mom said she did not want that disease and didn't want tested. I think they were hoping that the meds would be a quick fix. I think dad is going to ask for test finally!!

6. I would imagine she had kidney and liver checks while in hospital after the first infusion caused her BP to spike.

7. Her pain during infusion was from kidneys they said...lower back pain. I think they ran too fast so gave her benadryl and slowed infusion.

8. Adrenal..doubt it. Thymus...I think yes but until I see tests..not for sure.

9. Cardiac...Mom has always had white coat syndrome and took BP meds but had an afib attack once and put on meds.

10. Meds not sure if this is right dosage as dad read to me I am bad at note taking. Dad is not home now so will check again later tonight. This is really hard not being there

• Alprazolam 30mg but think dad might mean 3.0 and she cuts in half to 1.5 for anxiety. Takes morning and night.
• Coumadin/warafin 2.5 morning and night.
• Prolax taken with prednisone afternoon.
• Diavon 160 mill night Beta Blocker.
• Metoprolol/Toprol 25mg morning 50mg night and maybe afternoon.
• ISO Source 1.5 CAL Nestles 3x day and working to 4 x day
• Extra D3 and B12-2200mcg liquid into tube feeding

11. Ptosis..Dad is going to check but it hasn't been mentioned. I had that and now even when I feel a little MG weakness my eyes do not do that anymore...they only feel tight but when I test no drooping...yeah!

Thanks Annie for all your thoughts...you are the greatest and have missed you and our talks...I have been the same over on GFand Beyon...so busy but will start another post on how I have fixed most of myself...well not all...never really be normal..never was...LOL!!