Stress or depression may cause Symptoms
I've lived with the title & been treated for MS since 2012. I say it like that because, TODAY, I'm at a point I no longer understand my own body. I'm feeling confused & alone, questioning my care, my treatment, if I'm being heard. Yes, it's known I've dealt/deal with other stress-related family issues & have since my diagnosis. I went thru a high risk pregnancy, my son premature suffered a brain hemorrhage in utro just 2 years before, I was sick ever since. I've been blessed that all my symptoms have not been constant but when & what I experience has changed me & my life. Many haven't understood & chose to leave over support. So, I've been living a life that's totally not me. I've been so fatigued the bed has been my best friend & I'm sleeping away the day. My speech is robotic at times & words are lost, feeling embarrassed because in the past I've been made fun of over it.(symptom I've dealt with for years.) Tremors & dizzy spells. Also my comprehension, organization has suffered. I contacted my neurologist, no appointments, a week later I received a call he wants me to get an MRI, Scheduled 3 weeks out. My MRI was last Friday, I phoned my neurologist office the nurse informing me; "There's no changes in my MRI." So, from that I should be fine.is this a normal way MS patients are treated? Thru out the years I have been able to "feel" my body experiencing the symptoms, what I've learned ~ once an area of the brain has been affected by Sclerosis (scaring) it's permanent. Yes, stress & depression can bring on a flair. I don't waste my time trying to see the neurologist when I'm feeling my usual. When something is different or affecting my days are to me a sign ~ I may need to be seen. I'm confused about being told "Nothing has changed" on my MRI along with" It's due to stress or depression."
Majority of visits I've left with only those words.
The neurologist themselves have made me feel what I'm experiencing is because of my personal stress & depression, I need to suck it up, work it out, there's really nothing they can do besides my normal daily medication.This time I really feel disappointed & angry! I'm also a breast cancer survivor 3 yrs out from chemo/radiation.
Am I alone? Feeling this way after so long living with MS. I'd appreciate anyone sharing their experiences & thoughts.
Physically & mentally dealing with my symptoms and having my neurologist just take the one approach without seeing me in person. I should add~because I haven't had a major relapse he previously stated (in 2022) my MS was in remission. (The symptoms I'm experiencing are ones I've dealt with over the years.)
Thank you all for taking your time & reading my post! 😊✌️❤️
I wish I could reach out and give you a gentle hug,
. You are far from alone. One of the biggest complaints among our members is doctors who dismiss new symptoms because there are no changes in the MRI. Here is an article from one of our advocates who addresses that very issue: https://multiplesclerosis.net/living-with-ms/worse-symptoms-mri-change. Please consider getting a second opinion from another neurologist and think about switching doctors if the other one is more responsive. It is upsetting that this neurologist dismissed your concerns without even seeing you in person. You deserve so much better.
In the meantime, it might be wise to make an appointment with your primary care doctor. People with MS are often deficient in Vitamin D, B vitamins or folic acid, Deficiencies in any of those can significantly add to MS fatigue. There are also medications that might help. Here is an article with tips for addressing MS fatigue that might help: https://multiplesclerosis.net/living-with-ms/tips-fighting-fatigue.
I am glad you understand the impact of stress and depression on your MS symptoms and that you are willing to address it. MS can throw the chemicals in the brain off balance, creating depression or anxiety and making your symptoms worse. A psychiatrist might be able to help you bring those chemicals back into balance. Because you have MS, a neuropsychiatrist would be even better. Neuropsychiatrists are specifically trained to treat mental health issues that stem from problems with the Central Nervous System.
I hope you continue to advocate for yourself until you get the treatment you need and deserve. We are here for you whenever you need us. Thinking of you. - Lori (Team Member)Thank you for all the advice!! Along with the articles & connections, which I'll read. I'm sure I need to keep up with the exact vitamins you mentioned, I should know better after experiencing Breast cancer as well, those are important vitamins I've needed.
If you don't mind I'd like to share with you & possibly others,
I've been undergoing some type of medical treatment for quite a while. Since my children were young.
As far as family & support I only had 1 person I could truly count on, that was my Mom. We both were there for each other, a bad car accident & cancer x2 she needed me as well.
Yes, I was married that ended in 2012 & lost my Mom 2014 after taking care of her for over a year. As I mentioned I also have a son who was born with special needs, he's 24 now lives with me, he is truly a "Miracle".
His nickname at Children's Rehad so many years ago. He suffered a Grade III brain hemorrhage with hydrocephalus prior to birth.
Today he can do almost everything!!
As far as support & family taking MS seriously even down to my husband, that has been a negative. When I first was diagnosed, I became & desired involvement & advocating which was needed so badly. (2012)
I did make some difference & my involvement was noticed, but nothing from my family.
I received negative reactions, told to "Suck it up." I guess I became used to the narsasistic ways & why I stopped being involved. I thought I was being responsible showing support of my son & his needs. Even over my need of support.
I was put down anytime I mentioned or asked for understanding.
I have changed neurologist, so it's possible. 😉 It was years ago ~ because my now ex believed I was taking medication I didn't need, even though he never attended a doctor's appointment or any tests with me.
I lived much of this time being judged. Not only did my life need to learn a new normal, I was being rejected by those I trusted.
Because of that I myself made some mistakes & choices that weren't the best for myself or my children. (They'll always be that, no matter how old they are.
This disease is a "Taker"
We need more support & more advocacy ~ We need a cure!
I plan to become more involved, because it's my life!
Thank you again, for your the time you took to read my post. It took me forever to write it. 😊✌️❤️Hi
. Though your story is sad, your words really warmed my heart. They give me hope that you have reached a time and place in your life when you are ready to value yourself for the caring, giving person that you clearly are. Your son truly sounds like a miracle. I am glad you have him at your side. Are your other children supportive? If not, give them time. If they grew up with denial, it might take them a while to come around and understand. I hope you will consider reaching out and making new friends with people who have good hearts. They are out there. Many are right here in this community. The more you participate, the more you will get to know them. You will be surprised to find others in the least significant of places, like the line at the grocery store or the waiting room of the doctor's office, if you open yourself up to the possibilities. If you are feeling mobile and have the energy, try attending events at your local library or community center. That can be a great way to meet people. If you feel your cognitive issues are getting in the way, have cards made up that explain the cognitive impact of MS in a brief and easy to understand way. People here can help you with the wording or your can reach out to your local branch of the National MS Society. That is a great way to begin advocating and to acknowledge your cognitive symptoms as part of your disease, not as a definitive of yourself. Better days are ahead. You've got this and we are here for you. Gentle hugs. - Lori (Team Member)
I'm so sorry to hear what you've been going through. I wish I could say it was uncommon, but, unfortunately, your story is very familiar to many of us. In my own personal experience, the level of care has seemed to drop over the years as it feels like there are way more patients than doctors can keep up with.
While the disease can progress without major MRI changes, the situation your doctor has mentioned is more often than not the real culprit, that your condition has worsened because of some sort of trigger (be it stress, depression, weather, etc. I discuss triggers a little more here should you have any interest: https://multiplesclerosis.net/living-with-ms/what-to-know-about-ms-triggers). A good way of being sure, are the symptoms new or in areas that have already been impacted in the past? If they aren't completely new, then chances are there are just being triggered by something, but if you suddenly have issues with your legs and never did before, well, then I'd be more concerned (and your doctor should be too).
Now, that said, whether this is new disease activity or just triggered symptoms, if you don't feel you are being heard, then that's an issue to me. If you feel you need to see or talk to your doctor and you can't or feel like people are being dismissive, then it's time to seek another opinion! No one knows your body better than you and if you feel something isn't right, someone needs to listen to that. I think the number one thing I've recommended to folks over the years is to seek another opinion. That's not always easy but sometimes the headache of looking for and scheduling a new doctor can be well worth it.
