Cyndi DeHoff
Forum Replies Created
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I kind of had the same problem with this drug except I was itching all over when I took pyridostigmine. My neuro suggested that it was an additive of the medication that I was reacting to and not a true allergy to the main ingredient. He suggested I search for another pharmacy that uses a different manufacturer of pyridostigmine. So I was using Walgreens and I found that Rite aid used a different manufacturer for their pyridostigmine which ended up solving the problem. No itching. It was a huge relief because the drug works really well for me. I hope this helps. Good luck
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Hi Teresa , I want to be a part of the SEronegative zoom group please. You should have my email already. Text me if you need it again. I tried to DM but it said they were temporarily suspended
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Hi Maureen, if you scroll up to the very top here where it says Myasthenia gravis news you will see a circle with 3 horizontal lines inside in the upper right corner. Hit that circle and it will take you to a menu where you will find the Member line. Hit Member and find my name Cyndi DeHoff and under my name will say private message Hit that box and you can leave you phone number and email info. only I will see it.
We are looking forward to meeting everyone! -
Hi Jennie , we are working on doing a group zoom call with this Seronegative group. If you would like to join, please private message me and leave me your email and phone number. We would love to have you!
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Ladies we have talked about trying a zoom group with all of us. I have never started a zoom meeting myself, but I am willing to try and get things started if your all interested??
Everyone would need to private message me their email and phone numbers.
we would also need to work out a time that works for everyone. I am generally available anytime. I assume nights or weekends may work best ??
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Thanks for the info Maureen. I’m sorry you haven’t been able to find relief from your meds. It’s so frustrating trying to find something that works! Have you ever tried cyclosporine? That’s what did it for me after Prednisone and cellcept failed to do anything. We are all different.
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Maureen, What is Delta8?
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Shortness of breath
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Amy, yes I see a pulmonologist who has a special interest in neuromuscular diseases at university of Michigan. He is great. I qualified for a Bipap ventilator because of the respiratory weakness.
I started with the machine at night but it woke me up every night after about 4 hours. After several weeks of this, I realized I felt worse than when I started. More symptomatic and weaker. I told my doc that sleep is extremely important to help control my MG and the interruption is making the symptoms worse. So I discontinued the use at night and I only use the machine when needed during the day. He was good with that.
I did do a sleep study which showed a 6 so I do use a mouth appliance. I will say I have needed my daytime vent A LOT less since November when I began using the appliance at night.
I have read that MG and respiratory weakness won’t really show up on a sleep apnea test. This lastest sleep test I did was the same result I had before my MG started. -
Theresa you sound just like me with the SOB and the afternoon hours needing to collapse into bed!
I would love to start a Zoom or FaceTime group with all of us! Or whatever works for everyone
Maureen I know how you feel about keeping things from people around you because they don’t understand It can be really hard. Feel free to private message me anytime if you want to chat
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Hi everyone, I am also seronegative. I was diagnosed with single fiber EMG
my first symptom hit suddenly in the shower which was shortness of breath. Long story short, the first neurologist at University of Michigan immediately thought MG but the blood test was negative and I was passed to neuromuscular and found to have POTS. A year later my eyes wouldn’t stay open while watching TV so I had my daughter video while I did the ice pack test. I sent the video to my neuro, he ordered the emg and I got my diagnosis.
I started on cellcept but switched to cyclosporine which I did well on for 2 years. I chose to stop the drug when Covid hit and I have been doing pretty well. I sometimes get double vision and shortness of breath I do use a daytime Bipap machine for the shortness of breath when needed.
Do any of you have respiratory weakness?
Does anyone happen to live in Michigan?
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I also have Hashimotos, POTS, and small fiber neuropathy. Sometimes it’s hard to tell which disease is causing the problem. My neurologist calls me complicated, but In the nicest way.
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Both of the recipe ideas sound yummy, and I am looking forward to trying them! I love to cook when I have the energy. I also make a lot of soups because they are easy for me to chew.
I now like to make big batches of things to freeze some leftovers for low energy days. I make this base tomato pasta sauce that is good by itself or easy to add meatballs or veggies or even as a thin pizza sauce.6 lg cans of peeled Roma tomatoes or fresh tomatoes are great too when in season.
1/2 of head of garlic- I like alot so adjust to what you like .
1 onion chopped
big bunch of fresh basil chopped
Sauté onions and garlic in olive oil and a little butter. I quickly squeeze out the seeds of the tomatoes then add them to the pan. I break up the tomatoes with the spoon as they cook. And salt and pepper to taste. Finish with the fresh basil.
Toss with your favorite pasta and fresh Parmesan cheese. Sautéed mushrooms or other veggies are good to add also.This sauce freezes well in ziplock freezer bags
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I like shows that have several seasons like Bones,Schitts creek, Succession, New Girl, The Morning Show, Shameless, Downton Abbey, White Collar and million dollar listing LA and NY
I will try whatever is trending on the apps. I’m often surprised at the different shows that I end up enjoying.
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When covid hit , my anxiety increased significantly and my usual relaxation trick of doing puzzles or reading were no longer working. I found my late mother in laws old sewing machine in the closet and decided to teach myself how to make a quilt like she did for something new to do. I didn’t know the first the about sewing machines, fabrics, or quilts but I soon learned that there was a lot to learn and I loved the endless creative side. I find it relaxing to sit in my sewing room now and just create and learn new things It’s my happy place now.
I also have to add that playing with/petting my dogs is still my number one way to reduce anxiety
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I love to travel also!! As I write this, I am in the Upper Penninsula of Michigan along Lake Superior enjoying the fall colors taking short hikes and bike rides as my muscles allow. I am concentrating on what I can do that day knowing that it will change day to day. I rest often!!
I have an app on my phone that finds hospitals. I wear my Med ID alert bracelet. I have a cell booster that helps for areas with low cell reception , but it’s not perfect.
I live in Florida and Michigan so I get the freezing when it dips below 80 degrees. I travel with a heating pad. I like the one from Walgreens because it stays on. I also have a pair of thinner gloves that a cyclists would wear- bikes shops or Amazon sell them. I have been known to use them inside my house even. I will wear a base layer under my clothes in the cold. Anything that’s thin that will wick away the sweat. I always dress in multiple layers in the cold
The summer before the pandemic, I got really brave and booked a dream trip to Germany to celebrate a big anniversary. My MG was stable and my doc said go for it. It was a river cruise and I knew that they could pull the boat over anytime if I got sick and needed emergency care so I was comfortable with that. I had an anxiety attack the day before departure and almost cancelled because I was scared I would get sick. I took a chance and we had an incredible trip!! -
Joseph, my MG is also Seronegative(antibodies don’t show up in blood tests). I am assuming this is the type you have?? I received a Single Fiber EMG which confirmed the diagnosis of MG. I have had no problem with my health insurance paying for treatments. I know this test isn’t done just anywhere- usually major teaching hospitals. They take specialized training on the Neuros part and can be difficult to interpret the results so you really want someone who knows what they are doing administering the test. It’s just an idea you may want to discuss with your doctor if you haven’t had the test
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I stick to shopping online now especially since covid hit. I looking for store with free shipping and easy return policies I will order two sizes of the same item if I am unsure of which one will fit then return what I don’t want.
I simply don’t have the energy for shopping malls and trying on clothes in a dressing room -
Ronald I am so sorry to hear you lost your Newfie. I also have a Newfie named Wilbur. He is 3 and a 150lbs.
He was 3 months old when I finally got diagnosed with MG after a few years of symptoms. I got so tired chasing around my new puppy with not enough rest, that my symptoms suddenly came on strong. The neuro ordered a single fiber EMG which finally showed the MG (I am seronegative).
I love my giant, lovable, stubborn and hilarious dog , but I’m afraid this will be my last big dog because he is just too strong for me and very hard to handle by myself. He loves to lean against me to show me love which is the last thing I need. I’m thankful I don’t live alone and I do have help with him.
The next dog will need be smaller because I just can’t imagine living without an dog in my life
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I often use humor around others in regards to my MG. It puts others at ease. I like to laugh because life is short. Except some days I don’t feel well, and it’s harder to laugh about it, so I don’t. I just try and be honest
I don’t mind people close to me, like my husband and kids, laughing WITH me about MG, but they haven’t ever laughed AT me about my MG. Just like I would never laugh AT another person with any other illness or disability.
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When people ask how I am doing with my MG , I now say….There are no days off from this disease. Lots of meds, therapies and rest. I find keeping it general and quick usually works for me describing life with a invisible illness
I was told by a good friend when I was first diagnosed that “it’s a good thing I didn’t have MS cause that was a bad disease.” I didn’t know what to say at the time.
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<p style=”text-align: left;”>I have used acupuncture a few times for muscle pain I experience in my neck and shoulders. I have frequent neck weakness from MG which leads to the muscle pain. The acupuncture helps alleviate the pain for a period of time, but I wouldn’t say I experience any less weakness in my neck.</p>
Thanks for the acupressure idea Linda. I have never tried that so I’m going to look up that Dr and give it a try. -
Michelle, I am so happy you wrote this article and to hear of your successful day on the golf course!
I was an avid tennis player before MG and I miss the sport and my teammates very much! I am no longer able to play tennis because I have significant respiratory weakness so I needed other options.
I bought a pedal assist bike which is a huge game changer for me! I am now able to bike ride for several miles at a time with other people. This bike allows me to give myself a boost of power when I need it when going up a hill or when my muscles get tired. The bike makes me feel like a did before MG.
I am now planning outings and vacations with family and friends to ride bikes. The only downside is they are expensive.
I love team sports and I sometimes think about joining a pickleball league. But then I think about all those people who would need to understand that MG symptoms come and go and that one day I may play and not be able to the next. Then I think ,ugh,and i dont do anything further.
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I am on mestinon and cyclosporine
I also eat alot of salt and use the pickle juice (i also have POTS) but i cant say i noticed that it helped with the cramping.
I am on stretching everyday too I feel like it helps me a bit