My name is Angie, and I've been diagnosed since 2018. I found this site while looking for a local MS support group. I wasn't able to find one, but I did find this and it looks very informative.
My main problem right now is that I don't know if I need to accept that as bad as I feel it is now normal for me. My neuro wants to check to see if I have other autoimmune problems, but I haven't had any tests yet. I know that just because you have MS it doesn't mean that you can't get other things, but I just wonder if I'm expecting an unreasonable level of function. My baseline up until the last 6 months or so, was usually fairly manageable, but now I have a lot of bone pain/fatigue/brain fog/difficulty walking/dropping things. It is difficult for me to function normally. The last MRI (last year at this time) I had did not show new lesions, just some atrophy. GREAT--my brain is shrinking!
Just wanted to introduce myself, and now I'm going to poke around to get to know you all and see what you've been chatting about!
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nexttothesalt
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I've been a Type 1 diabetic for 32 years & I always figured that is it for me.Wishful thinking
😅
I then was diagnosed with MS about 12 years ago and as much as I didn't want that I was glad to have answers to the weirdness that I was experiencing.
My friend's mom who had MS, told me after my diagnosis to "Use it or lose it", meaning don't sit on your butt and mope about it.
She was not kidding.
Stay as active as you can. Any exercise is better than nothing.
I learned my lesson this past year when I blew off working out after 28 years of regularly exercising and am now trying to regain my muscles/strength that I lost.
I'm sorry about you having to deal with Diabetes too. Like one diagnosis isn't enough.
Thanks for the advice! I walk about 2 to 2.5 miles a day, but I really need to do strength training. I know you're right about losing it. I've been slack about it and I can tell the difference. I always had good muscle tone even though I didn't work out, and since the MS I have become so weak. Better do something about it.
I agree with falalalala and Jimeka: I learned very quickly how awesome everyone is. Super kind. There is a lot of love and humor which is huge me for since I have always seen humor as a huge factor to my "Survival."
so sorry you have some confusing things going on but for have MS things can be so different for each of us ..welcome to our great group of people who help you in any way they can ...feel free to ask anything you want and if it is a bad day you can scream and holler on here or you can have bs day and complain on here it feels good to get it off your chest...we are very understanding .. ..have a wonderful fun day filled with loads of love and happiness...
hi nexttothesalt welcome! You know i hate that my brain is shrinking. My neuro says all of our brains are shrinking as we age (and I can almost hear her say no big deal) Anyway your symptoms could be a UTI or something not related to MS. Please see your primary care doc. and yes, as a group, these are people with a great sense of humor. My advice to everyone that i wish i had taken is...exercise every day.
Welcome to the Group! Sorry to meet on this forum in the event their’s always a plan for everything we experience on this journey called Life. I pray that you’re able to find this forum helpful as I have in the last 2yrs. When I learned I had MS, my search for learning the disease started.
In my search I was able to find this site and it was the best thing ever. All the ppl are really friend and give straight forward advice and a lot of laughter to start my morning. Usually I check out the site daily after I study my Bible and seems as though it’s a sealer for the day. Many blessing🙏🏾
Thank you for the welcome! I'm so glad this group exists. I'm sure I'll have plenty of questions. I don't really know anyone who has MS. I know one person who thinks she does, but the doctors have told her it's psychosomatic. She can't really walk, and gets around on a scooter. Seems unlikely. Getting a diagnosis can be so rough.
Yes, I suggested she see mine as he's specifically an MS specialist. She's thinking about it but she says she's sick of doctors and doesn't trust them.
That's understandable when you have been going to one that won't listen to you, especially when you are clearly having problems. Hope she can start listening to you and take your advice sooner than later.
Welcome to the group. I was also diagnosed in 2018 and mine is progressive with no remittance periods.
So sorry to hear about all you are going through. And agreed about exercise. For me, I found that it was a “move it or lose it” thing. This group is great for venting, asking questions, and like others mentioned, the humor we all need!
Saying a prayer for you right now. Hang in there! There is always still something good to be thankful for even when symptoms are bad. Hold onto what makes you happy.
Welcome to the group. Yes you can get other things but what you described sounds like your new normal. I'm surprised your doctor hasn't ordered a new MRI to verify you haven't had any changes. That is my normal day to day. I hope everything goes back to your old normal again.
The neurologist's PA wanted to test for myositis, but I haven't gotten the lab tests yet. I think they like to do MRIs every 2 years. I'm sure that if I emphasize my difficulties a bit more they'll order one. Today my knees gave out, and my legs have been especially weak ever since. One of the problems I have is that I have a horrible reaction to steroids, and so even if I am having a relapse or exacerbation, there's not much to be done for it. I'm going to call the office tomorrow and get some advice. Meanwhile. I ordered a cane for emergencies.
Sorry to hear about your steroid issue. They have been the only thing that have brought me out of my exacerbations.The next best thing is to work on your problems one at a time. Backlofin or Gabapentin for your falls. For nausea, Zofran or compizine. Head or Muscle pain over the counter Ibuprofen or Tylenol. Hopefully these help your symptoms.
Welcome. I've had M.S. since 98 according to the post it on my computer, sounds about right for a person whose brain now rattles around in my skull? I've done all the DMT's for the first few decades? Along with so many drugs for this and for that as prescribed by my M.S. neuro's plural. I did all kinds of tests imaginable. Sleep studies...neuro psych studies, MRI's, (nap time!) I lived with flue-like symptoms from the DMT's for the last ??? Years. till my neuro of many many years convinced me to stop, even though I was so dedicated to making it work, he told me why?, they definitely aren't helping You. So I stopped. The need for all the other drugs were not needed one by one. Finally on no drugs, I quit work. And slipped into a coma"Comatose" for a few years. Actually not in a coma, just the heaviest brain fog so bad I couldn't function. I fought back, as I always do, loosing always, till I realized if I didn't eat, I was good? No brain fog. I lived off of self juiced fruits and veggies using my $30 juicer for years, slowly reintroducing real food, mostly fruits and veggies, tiny portions of lean meat/fish/seafood. Today, I eat healthy. But have learned to stay away from processed foods. All the ingredients that make up prepared foods might also be hurting us? So I read, again and again. Anyway, from a life of DMT'S and many script drugs, to not one script. Only suppliment vitamins. And Vaccines yes! Drugs no. Healthy eating yes. I now cook everthing from scratch. And walk without a cane anymore! Diabetis, don't have it. Dad, his mother....died from it, all horribly, but I know of friends from like families with diabetis, if you manage what you eat....the diabetis is controllable as they say. The Lupus, Chrones, Diabetis, and other all thrown in the same person, manage, manage manage. Or eat like you should. Maybe that's all that's needed?
Eating healthy is a serious commitment. I walked using a pedometer for years, with a cane to stay upright and to propel me forward for years. Even thru the rain and snow. Okay, did a lot of mall walking winters. Then the pandemic. 10,000 steps are much harder in a blizzard not using the mall. But you do what you have to, if you're not willing to give in and beat the disease(s) you have. Sorry, no pill, shot, or other will replace your lifestyle and what you put in your mouth. The big plus, besides it works. It's far cheaper than garbage food. I eat the seasons veggies. For the price of a burger in fries...?....I stopped living off of $1 whoppers and like garbage, spending $25,000 worth of drugs, to a shopping cart full of veggies with treats of fish, meat, or seafood for under $25.00!
Sorry, no restaurants or take away on this diet. THOUGH we did do a poke bowl/sushami plate/sushi plate splurge take away from a grocery deal, 2 of us went crazy and had dinner for under $25. Made by someone else, fresh, nothing artificial. But I missed the veggies. Made up for it next meal!
That's funny that you should offer that advice...I've been researching diet and am starting to realize that processed food is best avoided. I don't always feel like cooking (and cleaning up), but I guess I'll need to try to do better. I just bought a cane today, and will continue walking if I can. I usually walk 2 to 2.5 miles a day.
Hi, fellow newbie! I take Tecfidera. I'm not sure if it's working as I've been having a lot of trouble lately. But hopefully it's not serious or long-lasting.
Give it time for seeing some results. I’m back home 2 days after my first hospital stay. Forgive me for the short note until I get my second wind. Haven’t been able to let the good peeps here anything yet. I’m on Ocrevis(wrong spelling). With this disease you keep fighting, never give up and pray. You will be ok. 💜
Welcome! There is an in-person group in my town, and I went once and never went back. I felt like I was at an AA meeting. They went around the room and said, "Hi, my name is ___ and I was diagnosed ____." Then all the people in the room said, "Hi ___!" It was all I could do to keep from running out of the room! (Doesn't that sound like a Seinfeld episode?) People here are more "real"!
Sounds like TV for sure. I think it's probably a lot harder to be open in person. Writing is so much easier when you're talking about things that are negative in your life. We are usually trained to keep those things to ourselves, or certainly not talk to strangers about them. I'm glad you shared your experience because it makes me feel less disappointed not to find a group.
Hi and welcome! I’m sorry to hear about your MS diagnosis. I was diagnosed in 2019 and found this group shortly after. This is the only MS group I’m part of and I’ve learned so much. As mrsmike9 said, I haven’t heard great things about in person groups! I have a friend who was diagnosed with MS a few years before me and she was like do not go to an in person “support” group. They’re so depressing and so not supportive! I never tried one, but I’m assuming they’re not all bad and there certainly is a good one out there. As for this group, I know you will enjoy it 😊
welcome! limboland here, but i would say 2 things: since i'm the youngest of siblings that span generations and decades, i try to think that eventually i'd have to face my body changing b/c of age. it sucks, but the best thing a doctor ever said to me was when i said, "this doesn't happen to normal people" and he cut me off to say,, "but you're not normal." i've mentioned this before on here. i was super angry when he said it, but he's right. i'm nowhere near normal and am facing physical difficulties and limitations younger because of this.
the second is please get tested. many of us have seen ridiculous doctors who think they're some sort of god and completely ignore us, so the fact you have a doctor who is concerned about you and willing to get the whole picture? i'd take advantage of that. also, our illnesses interact with one another so to speak. i have coeliac. i also have spinal lesions, dystonia, ataxia, and etc. i was glutened by lettuce (of all things) a week ago. the next day i woke up with full on ataxic gait. generally i can slide my feet on the really bad days or walk with them really far apart, but i was too uncoordinated to do even that b/c glutening activates my immune system which sets off my neurological problems.
plus i just think it's best to know what you're up against so you can fight hardest.
welcome again and i hope you find what you need here. there are some amazing folks!
I'm sorry to hear about the gluten problem. That's such a rough thing to deal with, especially on top of MS. I think we'd all be better off if we did the kind of cooking it takes to avoid processed food, but it's an absolute necessity with celiac.
I will follow up, I'm just being a little slack. You're right, my doctor is pretty great, actually.
🤗 b/c of coeliac, i eat all of these organic foods and cook at home. i told my mum she should really shop where i shop and eat like i do. i can't remember the last time i used salt for instance. random, but 😀
Diet maybe be a good resolution for you and not the meds I suggested in my last response.I wouldn't stop all my meds though. I think that just open doors that can cause worse problems. I would request to change my DMT to Ocrevus or the new one you take once a month. I think the name is Ksempton (check the spelling and research it). I see it in my near future. My Nuerologist told me my next infusion will be my last one due to something she is seeing in my blood work that is lowering my antibodies and she wanted to switch me over to the new one.
I made the decision to stay on Ocrevus for at least one more dose since it has stopped exarbations for two and a half years.
Has far as diet and standing my family got me an office chair that raises to counter height on wheels.
Welcome, nexttothesalk! I am late reading your post. I live in a rural area and do not know anyone with MS either. This is a sweet group. Keep us posted if you have additional tests for other autoimmune problems! It's lovely to meet you.
I was diagnosed about 14 months ago, but still work full time. It is a struggle every single day. Is it worth it? Not really, but if I stayed home --- what would I do? My kids are grown and gone.
Thanks for saying hi and the welcome. It must be rough continuing to work, but I respect that you feel like you need something to do. I sometimes miss working for that reason, I also sometimes miss the "Friday Feeling!" LOL. It's funny, but there's no weekend to get excited about! But if you do have to stop working at some point, I can tell you that you will find things to fill your time. There are so many fun hobbies and crafts to try, on the days when you have energy.😀
I understand your work situation. I was a workaholic and was working 60 hours a week and took care of my 2 acres on the weekend and then was diagnosed with cancer. I was happy to hear that. If I got through the cancer I would be able to work again with my MS meds. That didn't work. Only left me worse than what I was and now on disability. It kills me that I have nothing to do. I would stay working as long as you can. Not having anything to do will eat you up.
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Hello...I'd like to introduce myself
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post 509 ms symptoms 14 Sep 2019
