Jodi Enders
Forum Replies Created
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Hey John! It seems as though the illness you came down with possibly triggered your MG symptoms/fatigue for longer than the illness itself lasted. Several MG treatments can cause frequent urination as well. Which MG treatments are you currently on?
That is great you took the initiative to get the sleep study done; the thought of it prevents many who probably should from getting it done. In regards to the sleep apnea and MG, I think you may be interested in the following: https://myastheniagravisnews.com/news/obstructive-sleep-apnea-higher-males-obese-patients/, https://myastheniagravisnews.com/forums/forums/topic/one-year-on-plus-dry-throat-and-coughing-and-various-sypmtoms/#post-22265, https://myastheniagravisnews.com/forums/forums/topic/cpap-machines-do-they-work-for-breathing-issues-while-sleeping/#post-20637.
Here are discussions about back pain and MG you may also like: https://myastheniagravisnews.com/forums/forums/topic/back-pain-and-weakness-causes/, https://myastheniagravisnews.com/forums/forums/topic/pain-and-myasthenia-gravis-2/, https://myastheniagravisnews.com/forums/forums/topic/pain-and-myasthenia-gravis/. Many doctors disregard pain and MG as being related despite a large majority of patients experiencing so.
-Jodi, Team Member
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Hey! Do you take a slow release mestinon before bed? If not, I suggest discussing that with your doctor. It may help with the symptoms you are now experiencing in the morning. You may be interested in this discussion: https://myastheniagravisnews.com/forums/forums/topic/have-you-had-eye-surgery-to-help-your-vision/
-Jodi, Team Member
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Hey Abby! I was not a college athlete, but I was diagnosed in my last semester of college while finishing my honors thesis 3 years ago now. I was extremely passionate about my career in archaeology. I was president of the club, volunteered for many professors to gain professional relationships, and did everything I could to help advance myself into a good graduate school position and, ultimately, a lifelong career. I think I can relate a bit to your loss, and I send my uttermost compassion your way. I wrote this article on my career loss a while back. If you are interested in the read, here is the link: https://myastheniagravisnews.com/columns/coping-with-loss-beloved-anthropology-career-path/
- Jodi, Team Member
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Jodi Enders
ModeratorDecember 10, 2023 at 11:03 am in reply to: Hair color. Does it bring on symptoms?You may be interested in these studies if you have yet to come across them: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4389085/, https://www.palomahealth.com/learn/autoimmune-disease-hair-dye.
- Jodi, Team Member
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Hey Jennifer! Are you currently on any MG treatment to try to control this symptom? How often is the nasal regurgitation occurring?
- Jodi, Team Member
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Jodi Enders
ModeratorAugust 4, 2023 at 2:17 pm in reply to: The MyastheniaGravisNews.com Forums is getting a makeover!The new makeover is here! We would love if you left your feedback about how you think the forums run and look on your mobile devices and computers 🙂
– Jodi, Team Member
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If you have someone to drive, South Dakota’s Black Hills region and the Badlands are incredible to enjoy from the road! No walking needed to be able to enjoy the trip. The airport in Rapid City is also tiny and never crowded – Jodi, Team Member
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Jodi Enders
ModeratorMarch 12, 2024 at 2:32 pm in reply to: One year on plus dry throat and coughing and various sypmtoms.I also have problems clicking on reply or other clickable words or buttons and having them not work. Scrolling up or down and then trying works for me. Our tech team is still in the process of switching other disease sites over to the new platform we switched over a few months ago. I have been taking notes on minor bugs that I will address with them when they are available. Let me know if there are any urgent issues you would like resolved or if the reply button limits you from replying to discussions. 🙂
-Jodi, Team Member
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Jodi Enders
ModeratorFebruary 8, 2024 at 2:10 pm in reply to: New approved MG treatment for gMG – Vyvgart HytruloHey, Rituximab is a common treatment for MG that is proving difficult to treat, so give that around three months to see if you notice any improvement. I believe Vyvgart is available in the UK: https://myastheniagravisnews.com/news/gmg-therapy-vyvgart-wins-uk-ok-achr-positive-adults/. However, as you mentioned, I have yet to get much feedback on how long the approval process can be.
myastheniagravisnews.com
gMG therapy Vyvgart wins UK OK for AChR-positive adults |...
Vyvgart is now approved in the U.K. as an add-on to standard therapy for adults with gMG who are positive for antibodies targeting AChR.
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Jodi Enders
ModeratorDecember 4, 2023 at 7:41 pm in reply to: What is your relationship with the term “disability” & “disabled?”Thanks so much for sharing all of those accommodation ideas!
- Jodi, Team Member
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Jodi Enders
ModeratorAugust 4, 2023 at 6:06 pm in reply to: Conditions that mimic Myasthenia Graviscorrect, this list is a combination of both diseases/illnesses and symptoms
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Central Serous Chorioretinopathy or smoking could trigger the double vision you continue to experience. Generally, Acetylcholinesterase inhibitors, or Mestinon, are usually a first line of defense treatment for MG. Sort of a temporary fix for when other treatments take a while to take effect or when symptoms only sometimes appear that are typically controlled by different types of treatment and you need some extra help. If you constantly have double vision, consider increasing the mestinon or Cellcept, as steroids have many long-term side effects. A maximum of a few years on the lowest dose possible is ideal with steroids. Still, different individuals’ bodies sometimes don’t corporate with tapering.
Steroids is prescribed if muscle weakness does not improve after taking acetylcholinesterase inhibitors, Mestinon.
Suppose you experience no noticeable improvement when you take Mestinon, which should be fast or within 30 minutes. In that case, you should discuss stopping it with your doctor.
Do you know which MG antibody you have or if you are seronegative? This can potentially make a difference in the effectiveness of treatments.
– Jodi, Team Member
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Jodi Enders
ModeratorJune 15, 2023 at 3:09 pm in reply to: Do you find it difficult to raise awareness for Myasthenia gravis?I think you will resonate with this article Phyllis, https://myastheniagravisnews.com/columns/whats-difference-between-attention-seeking-education/
– Jodi, Team Member -
Jodi Enders
ModeratorJune 15, 2023 at 3:09 pm in reply to: Do you find it difficult to raise awareness for Myasthenia gravis?I think you will resonate with this article Phyllis, https://myastheniagravisnews.com/columns/whats-difference-between-attention-seeking-education/
– Jodi, Team Member -
This article on our site discussed a study that found those who have a relative with MG to be more likely to develop it, especially siblings, compared to the general population, https://myastheniagravisnews.com/news/myasthenia-gravis-patients-immediate-relatives-more-prone-developing-disease-taiwan-study-suggests/
– Jodi, Team Member
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Jodi Enders
ModeratorJune 14, 2023 at 4:27 pm in reply to: Looking For 10 Individuals to Share Their MG Story in a Community Spotlight for Myasthenia Gravis Awareness Month (June)This pdf is very useful for referencing cautionary drugs categorized by average risk posed, http://nebula.wsimg.com/903ebe2c701eb4e72e3211dc9fb9064e?AccessKeyId=7F50FBE19A111D19DDAC&disposition=0&alloworigin=1
– Jodi, Team Member
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That is not surprising your doctors recommended against Vyvgart, considering it is a biologic treatment, a class of drugs produced from living organisms. These drugs suppress the immune system, which could be too dangerous after your cancers, more so than the risk of your MG symptoms without Vyvgart
– Jodi, Team Member
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Jodi Enders
ModeratorJune 2, 2023 at 9:51 am in reply to: Botox, Fillers, and Cosmetic Procedures With Myasthenia GravisAgreed, Amy. I have removed the comment. We appreciate you sharing your experience! It is very encouraging for others who need procedures that you had no bad reactions
– Jodi, Team Member -
A thymectomy is a procedure for removing the thymus gland. “As many as 15% of MG patients have a tumor in the thymus, called a thymoma, and another 60–75% have abnormal enlargement of this gland” https://myastheniagravisnews.com/thymectomy/. I believe you are asking if thymomas are hereditary. Thymomas can also be an isolated condition not associated with MG. There is insufficient scientific evidence to support a genetic link to thymomas. Some studies suggest MG could be hereditary, https://myastheniagravisnews.com/news/possible-mg-genetic-component-found-in-large-scale-analysis-north-america/. I have come across several members within MG forums that have other family members with MG, both immediate and extended relations. However, this is an improbable occurrence.
– Jodi, Team Member
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Jodi Enders
ModeratorApril 25, 2023 at 11:11 am in reply to: How Do You Approach MG With Curious ChildrenThat is a very personal ultimate decision, of course! However, there is no harm in being open with your daughter so she doesn’t become silently worried. Be as honest as you feel her level of maturity is ready for, or let her do the question-asking. To keep emotions neutral towards the situation, as it appears you are trying to keep all of this normal for her, add a positive to balance anything scary, worrisome, or overwhelming you may share with her. Such as, when sharing treatment you may go through, talk about the chance at improvement and that you are just partaking in self-care. Talk about the life lessons you are learning from this disease. Keep it uplifting. When you have a better day, let her know it is because of the treatment and rest so she can start associating healthcare as not scary but caring for yourself. https://myastheniagravisnews.com/columns/my-son-speaks-out-living-with-his-moms-myasthenia-gravis/ This new article may also interest you 🙂
– Jodi, Team Member -
Hey Robert! I think this discussion and story about experiences with MG and driving would be of interest to you:
https://myastheniagravisnews.com/forums/forums/topic/eyesight-causing-driving-difficulties/
https://myastheniagravisnews.com/columns/working-while-diagnosed-with-myasthenia-gravis/ -
I agree those articles and studies probably refer to tobacco instead of cannabis! However, it may be the inhaling and the act of smoking anything that triggers the MG.
I still use cannabis since MG, and it helps. But I smoked cannabis in blunt form with tobacco papers heavily for two years before my diagnosis at 21. Recent studies say smoking leads to a younger onset of symptoms for females.
I’ve always been interested in this topic. Super interesting if your exposure to tobacco air contributed to your onset. Did you smoke cannabis without tobacco paper at all before your diagnosis?
– Jodi, Team Member -
Hey Eleanor! From my search, it says Biotin can interfere with some bloodwork results. This is the case with many supplements, and your doctor should know to consider this when reading your lab results. I am not reading anything that Biotin triggers MG symptoms. But everybody is different, so I would pay attention to any changes you notice after you start taking the supplement.
In general, with supplements, you need to stay cautious of products that advertise they boost the immune system. They may contain a high amount of magnesium which is contradicted to use with MG and has been known to cause MG crises. Small amounts of consuming magnesium should be tolerable with MG. Your doctor would be the one to ask if the magnesium amount is too high 🙂
– Jodi, Team Member -
Hey Loren! Try posting this as a new topic for everyone to see. I am sure more people will see it. Let me know if you need help figuring out how to do this 🙂