[Ellyfr]

I'd like to hear from other old folk who have MG. I am 89 and have had Mg for nabout 13 years. Started as ocular and advanced to general after having been given ciprofloxacin. I take 60 mg mestinon 5x a day, but it is not nearly enough. It takes about an hour to kick in and an hour to decline. So I dont get enough help from it. My neurologist wont increase it. I have also had cellcept and IVIg which I couldnt tolerate. My digestion is extremely sensative and it seems to be intolerant of vitamins.I need a suggestion for a good sleeping pill. I am extremely fatigued, and my eyes are not cooperative.
My husband who is 91 is one of my caretakers and he suffers from neuropathy in his feet. Elly

[pingpongman]

Hi Elly
I'm 70 years young. Just leaving for IVIG will reply when I get back home.
Mike

Originally Posted by Ellyfr

I'd like to hear from other old folk who have MG. I am 89 and have had Mg for nabout 13 years. Started as ocular and advanced to general after having been given ciprofloxacin. I take 60 mg mestinon 5x a day, but it is not nearly enough. It takes about an hour to kick in and an hour to decline. So I dont get enough help from it. My neurologist wont increase it. I have also had cellcept and IVIg which I couldnt tolerate. My digestion is extremely sensative and it seems to be intolerant of vitamins.I need a suggestion for a good sleeping pill. I am extremely fatigued, and my eyes are not cooperative.
My husband who is 91 is one of my caretakers and he suffers from neuropathy in his feet. Elly

[neutro]

Hi Elly,
I'm almost 72 and have MG since I was 68. Started also as ocular and went to generalized after I was given Ceris...
I have been taking Cellcept from the beginning (1.5 g/d now) and Pred (15 mg/d now but 18 months ago I was down to 5 mg/d and the maximum 3 years ago was 75 mg). Mestinon varied from 180 mg/d (3 x 60) to 540 mg (6 x 60 + 1 Timespan). My neuro leaves me free to manage it to some extent, but she knows me and I learned to listen to my body to adjust my dosage.
I also have plasma exchange once a month, this was very effective initially but now, their effectiveness seems to wear out.
My main trouble is leg weakness which prevents me from walking more than 45 minutes without resting for at least one hour.
I do not have severe sleep problems but when needed, I rely on homeopathy and herbs.
Maurice.

[AnnieB3]

Hi, Elly. Welcome to the forum. I'm not "old" but I feel that way (age 52).

Why won't your neuro increase either the dose amount or the frequency? It may be time for a 2nd opinion. Mine recommended I take 90 mg. every three hours. But that's me.

Ah, digestion. Has anyone figured out WHY you have GI tract issues? It could be anything from celiac disease to lack of stomach acid to not a good enough gel coating due to a lack of omega 3's in your diet. Have you seen a gastroenterologist about this? Neuros are not gastros! You need to see the right specialist for the right problem.

Well, my suggestion for a "sleeping pill" is to try chia seeds a few hours before bedtime. They contain three times the amount of tryptophan that turkey does! There are a lot of other things you can do like meditation, writing things down that are on your mind before bedtime, not having a clock in the bedroom, using "white noise" like a fan, etc. A talk about this with your primary doctor is a good idea. Sleeping pills can be very bad for MG! Please try other things first.

If you are very tired, is it from a lack of sleep or are you tired on a regular basis for other reasons? I personally think both you and your husband should have your vitamin B12 checked, along with homocysteine which can be elevated if you are not getting B12 to your tissues. Have you had your thyroids checked too recently? The fact that your husband has neuropathy in his feet SCREAMS a B12 deficiency to me. I had a severe deficiency back in 1997-99. I don't know why the feet tend to get bad first but they often do. I was so tired I could not stay awake. So tired I felt sick.

If either of you end up having a B12 deficiency, which is VERY common in elderly people, I highly recommend that you get some methylcobalamin to take daily (twice a day). Too much B12 won't hurt you but not enough will hurt every single cell in your body. I get sublingual (under the tongue) methylcobalamin from www.iherb.com and have for 11 years. I like the Jarrow brand (5 mg.). You need to have folic acid from food (like fruits) or a multivitamin too.

It's not a bad idea to have your vitamin D checked too.

You need B12 to "make" acetylcholine, which you need in your body for MG (and lots of other reasons).

If I can help in any other way, let me know. People here are very supportive and have lots of information. I hope you will get some help from your primary doc, neuro or a 2nd opinion neuro.

Annie

[Ellyfr]

My neurologist would rather I take cellcept than increase the dosage of mestinon because of side affects. I discontinued cellcept because I felt it caused a pain on my right side. I may increase it in accordance with your suggestion. As far as my digestion, I've had a hiatal hernia on and off for many years. I think I might have had food poisening prior or concurrent with my getting MG because I suffered from severe digestive problems. I also think that I am a nervous person and some of the IBS comes from that. I also have an enlarged thyroid which seems to have gotten better after losing weight when I got the flu. Do you recommend prednisone as I really lack strength all over. I would like to get out of my apartment but dont have the strength. Thanks for your info -it is really helpful. Elly

[AnnieB3]

Elly, DO NOT make any changes to your Mestinon without the approval of your neurologist!!! I was NOT suggesting that you do that, nor would I.

I am not a doctor. You have to discuss all of this with them.

Cellcept and other immunosuppressants are often not given to elderly people due to the increased risk for infections, like pneumonia. IVIG may be possible if you don't have any contraindications like vein problems or allergies.

An enlarged thyroid is not normal. You should see an endocrinologist and be checked out. Graves Disease and autoimmune hypothyroidism often occur along with MG.

I wouldn't "recommend" anything. You have to ask your doctors what they recommend. Again, using immunotherapy like Pred or Cellcept at your age may come with too many risks. You have to consider quality of life as well as "fighting" a disease.

I hope you and your doctors can decide what to do for your MG.

Annie

[pingpongman]

Elly I definitely would not recommend Prednisone at your age. It can really cause havoc with any pre-exisiting conditions you have. It caused me to have a flare up of diverticulitis and 5 days in the hospital.
Mike

Originally Posted by AnnieB3

Elly, DO NOT make any changes to your Mestinon without the approval of your neurologist!!! I was NOT suggesting that you do that, nor would I.

I am not a doctor. You have to discuss all of this with them.

Cellcept and other immunosuppressants are often not given to elderly people due to the increased risk for infections, like pneumonia. IVIG may be possible if you don't have any contraindications like vein problems or allergies.

An enlarged thyroid is not normal. You should see an endocrinologist and be checked out. Graves Disease and autoimmune hypothyroidism often occur along with MG.

I wouldn't "recommend" anything. You have to ask your doctors what they recommend. Again, using immunotherapy like Pred or Cellcept at your age may come with too many risks. You have to consider quality of life as well as "fighting" a disease.

I hope you and your doctors can decide what to do for your MG.

Annie

[trumandem]

Just joined. I am 78; had mg 8 mo. Still trying to regulate dose--am changing neuros. Mainly occular myasthenia, but is in a bit of remission. But I am extremely tired a lot, and I am also having dogestove difficulties. Hard to get a neuro appt in this corner SC; have to wait 2 months this time. Will be reading.

[trumandem]

Perfectly obvious example of what mg is doing to my vision: Don't see double now--but the typos I make are not funny to me!

[pingpongman]

I'm 70 and had MG for about 8 months. I have the same symtoms. Thus far I have taken Mestinon, Imuran, Prednisone (put me in hospital), Neostignine and just finished 5 treatments of IVIG nothing has helped. I am currently on my 4th doctor, the first was too conserative to DX my MG, the second was too aggressive (Prednisone), the third was too conserative only concerned with my body muscles and not my vision. My doctor now seems somewhere between the other 3. I'm also in SC but very close to Charlotte. Had to go to Charlotte for IVIG. I did see a doctor in Charlotte at the ALS Center but he was only concerned with my body muscles. It is very difficult to find a doctor you are comfortable with in dealing with MG.
Good Luck
Mike

Originally Posted by trumandem

Just joined. I am 78; had mg 8 mo. Still trying to regulate dose--am changing neuros. Mainly occular myasthenia, but is in a bit of remission. But I am extremely tired a lot, and I am also having dogestove difficulties. Hard to get a neuro appt in this corner SC; have to wait 2 months this time. Will be reading.