George Tvardy
Forum Replies Created
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Slurred speech is a major symptom for me when I’m near the end of the effectiveness of a round of Vyvgart treatments. This is combined with major mouth weakness and difficulties with swallowing and chewing. When these symptoms surface, I know that it’s time for another series of Vyvgart treatments.
To compound things, I am a Children and Youth therapist who works in a community mental health center. My job IS talking. When I had my initial onset of symptoms in 2020 and before I started IViG treatments at that time, I was very fearful that I would no longer be able to do the job that I loved doing for 30 years.
Praise God that IViG treatments, and then Vyvgart, has helped to stabilize me. I’m fortunate that if my slurring starts, it’s usually clears up with rest and then my speech turns completely back to normal when I start Vyvgart. If I am slurring a lot, usually I explain my MG symptoms to my patients, do shorter therapy sessions and rest my voice as much as possible. Thankfully most of my patients are very understanding.
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Jodi, I come from two different perspectives with regards to this issue. First off, Iwas diagnosed with Generalized MG in May, 2020, and have taken Zoloft for years for anxiety issues. I too struggle with anxiety in addition to MG.
Second, I am a Licensed Marriage and Family Therapist here in Tennessee. I work in our local community mental health agency and see youth and their families on a daily basis. Some manage their mental health symptoms with the aid of medication, some manage without meds. I’ve seen both approaches work.
In my personal life, medication has helped me to decrease my anxiety and manage my everyday stress better. Oh, I still have my share of stress, don’t get me wrong, but Zoloft has helped to take the edge off of those feelings and make them more manageable. Then, I’m better able to use behavioral intervention to help me to lower my anxiety further.
As a professional, both approaches (meds vs. no meds) have worked for people that I have worked with in my 30 years in the field. I could never tell anyone whether to take or not take meds, as I don’t have to live with the repercussions. One thing that I do worry about with my clients, however, is that they sometimes feel shame over having to take medication for anxiety and/or depression, and they shouldn’t feel this way. Some people feel like they fail if they have to take medication for sadness or anxiety.
Many times, however, there is a biological component to sadness or worry do to chemical imbalances in the brain. There’s a physical aspect to it, and sometimes meds can help. I’m not one who rushes individuals to take meds, but I do try to educate about the undeserved stigma of taking meds for mental health issues. It’s OK if you choose to go that route, and you shouldn’t feel bad about taking an antidepressant like you wouldn’t feel bad about taking an antibiotic for an infection or insulin for diabetes. Lowering your stress level by addressing anxiety and/or depression can actually decrease MG symptoms according to my neurologist that I see for my MG.
Good luck with this issue. You come across as very bright and insightful, and I’m sure that you will make a decision that is best for you. My hope and prayer is that you find peace and clarity about this issue and that you make the decision that is best for you personally. Take care!
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I just completed my first series of 4 Vyvgart infusions. I am ACHR-Positive gMG., with my initial onset in April, 2020. I initially had positive results from IVIG infusions, but in the last 6 mo., they were not very effective in improving my symptoms (labored breathing, swallowing issues, blurred vision, and esp. slurred speech [which is important to address for me personally because I’m a licensed marriage and family therapist who talks to many individuals on a daily basis]).
Knock on wood, Vyvgart has done wonders for me. The day after my first treatment, my symptoms improved dramatically, esp. speech, breathing and vision. I have just a little issue w/swallowing, but nowhere near where things were before the first treatment series. I go back to my neurologist in August for follow-up.
As an aside, the Vyvgart patient assistance program is WONDERFUL, and has assisted w/copays. I also have a nurse who periodically checks in with me to see how I’m doing.
I know that my story is probably rare, and that many times individuals need several infusions or series to stabilize and see change. I feel very fortunate that I’ve had a great result from my Vyvgart treatment, and it is my prayer that this drug can help others like it has helped me.
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Michelle, I was diagnosed with Generalized MG in May, 2020. This April, I went to the Cleveland Clinic for a MG consult with Dr. Steven Shook. I was VERY IMPRESSED with his knowledge, thoroughness and bedside manner. His specialty is MG, and what he explained to me was that most local neurologists do their very best in trying to treat MG, but their knowledge base is limited given that they may only see a couple of individuals in their entire practice with MG. Since Dr. Shook and others at major clinics specialize in MG, they have extensive specialized training in the treatment of MG and can better individualize your treatment regimen based on your symptoms and challenges.
I would recommend that anyone with MG consider going to Mayo, Cleveland Clinic, Johns Hopkins, Vanderbilt or other top notch hospitals for at least an MG Consult, especially if you live close to one of those facilities. Although I live in Tennessee, I grew up in the Cleveland area and so my wife and I could stay with family, which made my trip there much more comfortable. That’s why I personally chose the Clinic.
It is amazing how well the Cleveland Clinic staff treat their patients and how patient care and positive interactions with staff is prioritized. And I’ve heard that it is the same at Mayo. Personally, I don’t think that you can go wrong in setting up at least a consult to learn more about your treatment options. I hope that you can get the advice and care that you are looking for and that you deserve. Good luck and God Bless!
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Michelle, I was diagnosed with Generalized MG in May, 2020. This April, I went to the Cleveland Clinic for a MG consult with Dr. Steven Shook. I was VERY IMPRESSED with his knowledge, thoroughness and bedside manner. His specialty is MG, and what he explained to me was that most local neurologists do their very best in trying to treat MG, but their knowledge base is limited given that they may only see a couple of individuals in their entire practice with MG given that MG is a rare disorder. Since he and others at major clinics specialize in MG, they have extensive specialize training in the treatment of MG and can better individualize your treatment regimen based on your symptoms and challenges.
I would recommend that anyone with MG consider going to Mayo, Cleveland Clinic, Vanderbilt, or other top notch hospitals for at least an MG Consult, especially if you live close to one of those facilities. Although I live in Tennessee, I grew up in the Cleveland area and so my wife and I could stay with family, which made my trip there much more comfortable.
Ot is amazing how well the Cleveland Clinic staff treat their patients and how patient care and positive interactions with staff is prioritized. And I’ve heard that it is the same at Mayo. Personally, I don’t think that you can go wrong in setting up at least a consult to learn more about your treatment options. I hope that you can get the advice and care that you are looking for and that you deserve. Good luck and God Bless!
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My Generalized MG surfaced in April, 2020, almost exactly one month after I had hip replacement surgery. I did IViG treatments to stop acute symptoms, and the started on mestinon and cellcept to try to initiate remission. Mestinon helped with speech and swallowing, but cellcept didn’t seem to help put my MG into remission. April, 2021 I went to the Cleveland Clinic, and I started prednisone, 10 mg, daily, stayed on the cellcept, and also switched to extended release Mestinon since I am a marriage and family therapist and my speech would begin to slur during therapy sessions with my clients about 3 hours after taking regular Mestinon.
Finally, after about 1 1/2 years, I finally feel as if I’m getting closer to remission now that prednisone has been added. Feeling much better. Weight gain is a legitimate issue, however, as I’ve gained 10-15 pounds since this April. Hopefully I can get to the point of being tapered off the prednisone and getting the weight back off. I do feel fortunate and blessed given that I have had a lot of excellent, compassionate and caring healthcare workers who have aided me with this new journey!