Hello everyone. Im Danielle. I was diagnosed with RRMS in 2013. For the most part it didn't bother me, plus I was alway very stubborn so I pushed myself through.
Now, I've realized that I forgot to buy my extended warranty. LOL. My whole body is falling apart and I'm having issues I didn't even know were related to MS. I have the normal issues like looking like I'm walking on a ship's deck, swaying at times. (not always) I think my body has a sense of humor and flips the toggle switch just for fun.
My biggest issues are cognitive. When my brain fog is really bad I play a wav. file of a fog horn as I enter my boss's office to give her a heads up. (and a laugh) It's scary when you feel that lost. My son got me a Tile for my wallet so that I can't lose it again.
My newest concern is sensory overload. It has popped up in the past month or two. It is causing me so much grief. My hair touching my face disturbs me. I have to take my jewelry off. I"m uncomfortable in my own skin and squirm and feel restless sitting anywhere. I can't concentrate on paperwork and feel overwhelmed just looking at it. I almost feels like I'm trying to read and write in a foreign language. Would like suggestions if anyone has luck dealing with this. Will check back tomorrow because this is becoming overwhelming. Have a great night. Thanks for all help.
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Danielle2311
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Hi Danielle, I've been on the Paleo Diet for 2.5 months & my cognition has greatly improved & my brain fog is virtually no existent. My fatigue has almost completely disappeared also . Good Luck.
I have a lot of problems with sensory overload. I have found that I have to wear wool socks and slippers (even in the summer due to air conditioning) to help me not have pain. It is because the cold seems to affect me just as much as heat does, just in a different way. When I get cold (particularly my hands and feet) I get pain all over, especially on my back, and my skin hurts to the touch. I also have more problems with spasticity when I'm cold, especially my feet. If you research Central Pain Syndrome (or central neuropathic pain), you may find that this might be affecting you. MS can cause it. Also, if you have lesions on a certain part of your thoracic spine, it may be linked to the development of this. Here is a link to a study that was done about it: ncbi.nlm.nih.gov/pmc/articl...
You obviously have a sense of humor about this and that's so vital to coping! Love the extended warrantee and on/off toggle switch. I can so relate!
Meditation and remembering to "breathe" help me with the sensory overload. The fog caused me to stop working. It was a very hard decision to make but in the end a really good one for my health.
Danielle2311 Welcome to Our MSAA Community. 😊 I won't overload you with to much. Just say hi and take your time. Hope you take the time to get to know us. 😄 Cause I know how you feel. I get like that with crowds.😕
It seems like you're trying very hard to function! Good for you😊! I worked for 3 years after my diagnosis. I kept relapsing and missing work. I'm on my 3rd DMT and it's working well. I haven't had a relapse for 15 months. Maybe talking to your neuro about your latest issues would help. Good luck!
Welcome, Danielle2311 . Like you, my cognitive issues top my MS symptom list. The mental fatigue is overwhelming, and has brought me to tears too many days to count. I'm sorry you suffer with it too, but I'm happy you found an empathetic group of new friends here. 💕
Danielle2311 Finally, my twin in symptoms!!! Good luck getting family and friends to understand sensory overload, cog fog, emotional roller coaster, and disconnected parts of your body that have a will of their own (like my right hand that flips coffee).. I have tried every diet, every meditation, every therapy, etc etc. I wasn't correctly diagnosed until 6/6/16, then told I've had it for 53 years since my first bout with optic neuritis when 17. Dx with fibromyalgia and everything else during those 50 years. O am tired of coping. My "dear" neurologist said I need to find new ways to cope!!! Be praying for you!!!
You have our sympathy and empathy. I'm glad you had a good stretch of having symptoms which you could cope with well, but am sorry about this new development.
I don't have any brilliant suggestions, and I don't work outside the home, but know that telling others honestly about a symptom, especially when it may affect them, is helpful. My sweet husband is a talker, and at times, especially during the relapse, I have had to tell him that there is "nobody home." That way he didn't take it personally when I appeared not to listen. The same for when he would rest his hand on my leg or arm, and it was very uncomfortable. I had to simplify meals then, or we would have had some frightening experiences at the dinner table.
Your great sense of humor obviously helps you already. Keep it up, but do talk with your neurologist to see about possible medication to ease your symptoms.
Welcome. I can't stand jewelry either! I never thought it was related to sensory. But it makes sense. My husband never takes of his watch or ring. I can't remember the last time I wore mine! And if I do, I take it off as I'm walking in the house! I've been saying it was too heavy but sensory makes more sense. I also can't stand socks with seams or labels in shirts.
I have the same issues, I can't stand certain things touching me, like Angie said tags in clothes and certain jewelry. But mostly my thing is crowds, I can't be in them. I just get overloaded. We love to go to the farmers market, but I have to keep open space around me there. One thing that has helped me is the same med I take for my very wicked tremors and spasticity, and that is Klonopin. I only take one mg two times a day depending on how spastic my crazy body gets, but it helps with the sensory issue too. Just a thought. Let us know how you do. Kelly
Danielle2311, I love your sense of humor! Sorry, I can not help you because I have the same issues. However, you did make me laugh today. I look for one thing to laugh for every day. Forgetting to buy my extended warranty cracked me up! Me too! LoL
Hope your visit went well. I had a torn meniscus from my athletic days. After having surgery, I really started falling within a 4 month period. PT suggested I was healed from surgery, it had to be more. Recommended MRI and the MS diagnosis followed. You are quite a comedian! Thanks for the humor!
The visit didn't go too well. He thinks that I have a lot of arthritis and that my meniscus has probably been torn for a long time, surgery won't help, steroid shot and therapy probably would. For some crazy reason, I have issues with cortisone, which is a bad thing since that is the only treatment for MS exacerbations. With IV infusions I feel like death for weeks, I"m drunk on steroids, slur speech, can't think right, fall over...etc. My doctor decided that athgar gel might be better since I'm using my own steroids....nope. Got so desperate that I spent $1850 on an emergency room visit just for them to say...Sorry,, don't know why this is happening. My symptoms for that visit in May were a pulse in the 40s, My blood sugar dropping into the 60s. Pain shooting through my body in such a way I thought I was have pancreatitis. Dumb little me said, "this appointment for my knee will just be a local injection...what can it hurt?" Childbirth is no longer the worst experience with pain I can imagine. I went to the ortho with a 7 out of 10 pain. 6 hours later I was at a 15 out of 10. I would rather push a watermelon out of my nostril than EVER do a shot again. Seems I have a conditions that causes cortisone flares... I got smart and had my son record me trying to walk 8 feet. I tried to show it to my chiropractor yesterday, he had to turn away with a tear in his eye...the video is hard to watch, even for me. I have never personally seen anyone in that much pain and I am a nurse. With a lot of prayers, ice, and ibuprofen, I was able to function the next day. YAY.
Oh Danielle2311, I am so sorry to hear all that you went through. Thank God that you were able 2 function on the following day. Are you still working? I hope you get something soon to alleviate your pain. I can relate to your knee pain. I still feel it from time to time.
No, I'm not working. Last Friday my neurologist agreed it was time to stop. I have only been off work for 2 days, the reality of no job, and COBRA are about to hit. Thankfully I have disability insurance so I hope to just squeeze by since cobra payments are $1350.
Wow! I just read your post. I thought I was the only one dealing with sensory overload. I'm an orchestra teacher, so sometimes this can be a big problem 😜
I bet. Now that I'm having to step away from the stresses, I am hoping to figure out ways to help others from going into overload. I can't believe how little I have ever heard of overload...glad to see this post today because I am seeing my Neuro today and I don't think I mentioned it to her before. Thanks. Have a great day
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