Hi, and welcome. Please feel free to ask questions here. The people here are incredibly helpful.

First, what medicines are you on? We can give you tips about taking different ones, and what to watch out for. I'm guessing you're on Mestinon (pyridostigmine is the generic name). This is very helpful for controlling symptoms, but sometimes the dosage takes a little tweaking. If you find it bothers your stomach, take with food. If you find it makes you twitchy, you may be on too high a dose. If you find it works but wears off too fast, ask your doctor if you can take doses closer together instead of taking more (it does tend to wear off fast). There's a time-release version for people who are bothered by symptoms in the middle of the night--better than getting up to take a pill every three or four hours. One more thing about Mestinon: too much can make you weaker. Just something to be aware of.

Are you on Prednisone, too? Did you just start taking it, or were they giving it to you in the hospital? I ask because you need to be careful in the beginning with this drug. Sometimes it makes myasthenics worse for a bit before it makes them better.

Above all (I don't know if I need to tell you this after what you've just been though!) be careful. Any new symptom, or sudden worsening of symptoms, needs to be taken very seriously. A crisis (as you know) can come on fast, so don't take any chances. Call an ambulance.

Try to learn your triggers. I think all of us find that too much activity brings on symptoms. Any kind of stress is bad (I know, that's a tough one!) Many of us have trouble with heat. Be careful with drugs, like antibiotics--some of them make MG worse. Ask your neurologist before taking anything new. Don't assume your primary doctor will know.

Phew, I know this is a lot at once! Please ask questions here. It's the best way to learn, and we're all eager to help.

Abby

Hi, Roy. I don't know anything about neuropathy, but your symptoms definitely sound consistent with MG to me. I hope you can see a neurologist soon. There is a blood test for MG (if you test positive, you definitely have MG. If you test negative, you might still have it). There are drugs that help a lot.

Please know that MG is nothing to fool around with. A crisis can come on really fast. If you are struggling to breathe, or can't swallow, it's a medical emergency. Go to the ER or call 911.

Please feel free to ask questions here.

Abby

Hey

Hey I'm Quantum.

I was diagnosed with MG at 17, and had a thymectomy at 18. I struggled really hard ended up having IVIG, and everything in the early stages, and of course took mestinon.

After a few years (I was 22ish) the thymectomy kicked in, and I was really good for about 10 years. Lately (I'm 34 now) I've been having major issues.

I just got out of the hospital a couple of days ago, after having a major attack (breathing issues, ending up in the emergency room.)

Right now I'm trying to figure out just the right dosage of mestinon, and just taking a couple of weeks off.

That's pretty much my story

Thanks.

Hi, Quantum, and welcome. Posts to this sticky-thread sometimes don't get noticed. Feel free to start a new thread.

As you probably know, Mestinon has a very short half-life. If you feel like you're not taking enough, the first line of attack is to shorten the time between doses rather than to increase the dose (with the doctor's OK, of course). I hope your neurologist will also discuss the possibility of other treatments for you: immunosuppressants like Imuran, CellCept or Prednisone, and IVIg infusions.

Thanks for joining. This is a great place.

Abby

September 2nd 2012 I completed the Disneyland Half Marathon. The race was a bit of a struggle after mile 8 but I figured it was the heat. At that time I had no symptoms. 10 days later I was having blurred vision and I thought it was sinus related it will pass. A few days pass my vision is double and I am having a hard time keeping my eye open. I went to an eye doc who suggested MG and he sent me to an 2nd eye doc two days later who agreed and then on to a neurologist 2 days later. By then I was having symptoms in both hands and both legs. He confirmed the first two findings and did more tests and said I had classic symptoms and ordered plasmapheresis to begin on Monday October 1st two days later. By Monday morning I was at a point where buttering toast was a struggle. In two weeks I had gone from symptom free to crisis mode. I was told to start taking prednisone and began with 20mg every other day and I will be up to 80mg every other day within the next week.

Tomorrow will be my 5th and last plasmapheresis treatment and my vision has cleared up substantially. My hands are better and my right leg still is pretty weak. Found out today my ACHR Binding AB was 8.75 and while I know that is high I have no idea how high that is or if it relates to the severity of the symptoms.

The treatments are helping but I have a lot to learn about MG and I hope to learn more here.

I've been suffering fatigue, poor concentration for several years. In March, I had a virus/high temperature and started to get burning in my palm and fingers. A month later, I had another virus/temperature, and since then nerve pain has spread to all four limbs.

Symptoms include muscle cramps, it feeling like a saw's been taken to my wrists, needles and burning in my toes, sensations like my fingers breaking. My walking's also been affected. Legs sometimes go weak, and feels like I'm drunk below the waist. Muscles in shins and forearms sometimes go rock hard. It feels like needles are pushed in my finger joints. There are times when the nerve pain leaps around my body like tasmanian devil. In fingers, then hip, toes, arms... a few seconds in each... brief pause, then off it goes again! It's like living with a small, malevolent gnome who's equipped with a hammer and a spike.

MRI scans show nothing. Neck x-ray shows some deterioration, but I've no pain in my neck. Traction tried... no change in the nerve pain I had in the hand (at the time of the traction).

They've tried me on gabapentin (no impact on nerve pain, but I felt as high as a kite - and incredibly happy!). Walking was getting worse quite rapidly and I was existing on 3-5 hours sleep a day with nerve pain preventing me from sleeping.

Then they moved me to pregabalin. A little improvement in nerve pain, definite improvement in walking and some improvement in sleep, but some side effects I don't like. My hands feel like they've been dipped in oil (a really horrible sensation). I have 'brain farts'. I do a lot of writing, and reread a paragraph to find 'word substitution' and on rare occasions I've missed a letter out (imagine a paragraph with no 'e's). I also feel grumpy. Ratty as hell. It's not me, I don't like it.

Next we're probably going to try duloxetine as the side effects of pregabalin aren't pleasant for me.

The neurologist is convinced I don't have MS. While I do have diabetes, the symptoms all started in the hands and only recently moved into the feet. I don't have the tender spots you'd experience with fibromyalgia. Tests have ruled out lupus. The closest I have to a diagnosis is an odd variation of chronic fatigue syndrome and maybe a bit of diabetic neuropathy too.

..the most recent weird symptom is a feeling that my hands are slimy. I can't find any reference to this on the net. Washing doesn't help. It lasts anywhere up to a day, then *poof*... it's gone? Argggggg

Does anyone have any ideas (or does my ex-mother-in-law have a voodoo doll and set of pins)?

Joe

Hi, Joe. I'm sorry I don't have any suggestions for you. I just wanted to say that the sticky thread ("Your diagnosis, treatment & other information") sometimes gets overlooked because of the format of the forum. You might try posting your question under a new thread (click the "new thread" button on the upper left). There are people here with a lot of general medical knowledge, and someone might have some ideas.

Abby

I've been posting here for a while, but I'm finally responding to this thread. I've only recently been diagnosed with positive modulating antibodies by a Rheumatologist. I know it's not the normal doctor to see, but he's the only one that has dared to treat me.

Many years ago, over ten years, I came out positive for modulating antibodies, but when tested again I was neutral. I was drinking a lot of caffeinated soda at the time so that may have altered the results. Through the years I've had more tests that came back negative - probably because of the caffeine. I no longer drink sodas and now the test is positive again.

The muscles that are affected are my upper eyelids and forehead, the muscle under my tongue, swallowing muscles, neck weakness, trapezius weakness, upper arm weakness, diaphragm weakness, some of these bear down on my spine and rib cage. My upper thighs are also weak. I get double vision too especially after reading for too long. The muscles around my mouth droop often. There's probably other things going on that I can't remember right now.

I just had a lumbar x ray with a few vertebrae into my thoracic to see the damage. I've tried to convince other doctors to check out my spine before and it never happened. At least this Rheumatologist is really trying to help. He specializes in auto-immune diseases, so I think I'm in good hands. My GP sent me to him because she thought I had some other disease relating to Rheumatology. Some of my symptoms sound like Polymyositis and maybe I should ask for an anti-jo antibody test. I'm sure it's possible to have MG and Polymyositis.

You really have to be proactive about making sure that u find a neuro that specializes in the more rare things like mg my first doc over prescribed me because he didn't understand what he was dealing with and almost killed me before my family doctor stepped in and sent me to a hospital in a major city that understood what they are dealing with

Hi Beannie, I'm brand new here, but have been in the docs offices for years getting diagnosed (they had no clue, was seeing rheumatologists for years). My neuro said that new literature points to the idea that the bloods are almost useless, because they are most likely many many antibodies that can cause mg, and our current system tests for very few.

I am waiting for my MuSK and LEMS, but he already gave me the mg diagnosis. I have all the LEMS symptoms with dysautonomia but he still strongly feels that it is mg (from the SFEMG), he says mg does NOT fit in a box and his patients present in very different ways. I have sensory weirdness and so much other garbage, he could see through the mess and I finally have a diagnosis. I hope that your doctors listen to you and take you seriously, it took me an unbelievable number of years of ER visits to get a doc with a clue. Good luck to you!