I am 21 years old and have been diagnosed with MS for roughly 6 months - although it did take almost 2 years of pestering doctors before they would listen to me. Did anyone else find that doctors did not believe them at first because they are young? I was lucky enough to find a GP who listened to me and was diagnosed with RRMS after various tests. A couple of symptoms I find most difficult to deal with is the restless legs at night & sensitivity to touch. Funny how only the lightest touch to my skin can feel like a punch sometimes. What are some symptoms that really bother you with your MS? I currently work full time but I’m studying so that I can find a job that will allow for more rest and take into account any changes to my symptoms.
I’ve found a couple of things help with some of the symptoms of MS and make life a little more bearable. When I can, I like to take hot baths and use a therapy “gun” or roller on my sore muscles. I’d love some advice, especially from people who have been suffering with MS for some time about what helps with a bad flare up to make it more manageable.
Gentle hugs
B xxx
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bronniee
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I had the same problem i went to the doctor three times, went to er djd ct scan got sent home then went to a different hospital the er dr sent me for an mri and diagnosed me due to the many brain lesions. I was 28 when i was diagnosed 2 summers ago. The fatigue bothers me i have two toddlers and work from home. I also feel throat tightness which really bothers me when it happens. I too find a massager helps on sore muscles. Blessings
Hi, thanks for your reply. Sorry to hear you weren’t listened to at first. Oh, it must be difficult for you with little ones. My first two mri’s were actually clear, the third one was where the lesions were visible!
I am so sorry that you have ms at such an early age, do you have a supportive family.? I wish I could have hot baths but the heat sucks all the energy out of me. I am pleased that it works for you. Some people have found that something as simple as drinking hot chocolate helps with the fatigue, exercise helps with muscle spasms, and I find microwave wheat bags most comforting. Blessings Jimeka, and welcome to the forum. 😊
Hi, thanks for your reply. I do have supportive family but at the same time I think it is very hard for people to understand how difficult living with MS can be sometimes - especially as sometimes I seem to get through the day with bearable pain. I suppose it can be confusing to people who don’t understand. I understand - I usually have my bath just before I go to sleep and find that it helps me to sleep with less restlessness (not always). Thank you for your advice - I will definitely try the wheat bags and I am partial to a hot chocolate already, haha.
Welcome to the group. It's a great place to be. It took about 4 years and many drs and tests before I was diagnosed and I was 56 at the time. Hot weather and showers make me melt...I can't function at all. For my fatigue, I just take my time and relax when doing something, what use to take 5 minutes may now take 15. Exercise helps with keeping the muscles strong. Everyone has different issues and their own way of finding something that works. Stay strong, keep your chin up and we are all here to listen.
Hi, wow I’m so sorry that it took you so long to be diagnosed. My first two MRI’s were clear and I’m sure the doctor thought I was going mad as I must have gone around 6/7 times. I think that is a great way of looking at things, and patience with my self is definitely something I need to implement more into my everyday. Thanks for your reply.
Welcome! I just got some rollers! I’ve been using a vibration ball for relief and I think it’s nice. I have a vibration plate to stand on and forget to use it most of the time. I find the most helpful is massage therapy, particularly if they are experienced with MS. Rest helps me get more mileage out of my legs. For a bad flare I try to cancel anything I have to do outside of the house and just survive the day, or ask for help with my kids if I’m not able to function well (or if I’m having my infusion which kicks my butt).
Hi! I really find this sort of thing helpful, and struggled for ages with sore muscles before I found out about rollers / therapy guns. I too tend to use rollers on days where I’m more sensitive. (Sometimes the therapy gun can be a little painful if my skin is particularly sensitive). I am definitely looking to try massage therapy, and I’m glad that you found some things to help you cope. I’m glad that you are able to ask for help with your kids, and that you are supported as I know this makes a world of difference.
I think that maybe for me the doctors don’t see a lot of MS so it took a LOT of eye dr appointments to different doctors for one of them to say that maybe i should be checked for MS. (My funky vision was my first unexplainable symptom.) I really like the free MS exercises Trevor Wicken shows online, if you wanna look him up.
Yes it seems that way to me. I sometimes felt before I was diagnosed that the doctors didn’t take me seriously. I struggled a lot even after I was diagnosed in terms of pain relief. I have never wanted strong painkillers, or CD’s (controlled drugs) such as morphine etc, but really struggle with pain and my prescribed painkillers just weren’t cutting it. - I was told my a doctor that they won’t give me anything else as I am young and they don’t want me to become addicted to medication. While I understand this, it was very frustrating because MS is MS and I have to go my whole life feeling this way. I have looked into pain relief patches and this is something I am discussing with my doctor/ nurse now. I don’t want strong drugs, just something to ease the pain. I have since looked into alternative therapies such as massage etc. Thanks for the advice about the online exercises. I will definitely take a look.
A physical therapist can be really helpful in evaluating your specific issues and prescribing stretches and exercises just for you. Muscle relaxers are a godsend to me, too.
the hot baths are a really a BAD idea. Have you started a Disease-Modifying Therapy (DMT) yet? I would suggest the strongest that you can get. I measure strength in the reduction of the relapse rate.(amount of attacks per annum. Attacks) Ocrevus might be your choice. Start a heart-healthy diet, Mediterranean is good, be strict but not obsessive about it. Exercise and stop smoking if you do.
Keep a really positive attitude, ms can hurt and it does attack your confidence but it is livable. Be brave and be strong.
Thank you for your advice. I didn’t know about the hot baths being bad, I find that baths in general help because if the water - so will go for lukewarm baths. I have started a DMT and funnily enough Ocrevus is the one I’m using currently. Thank you so much for the advice about the diet, and I will definitely research more into the Mediterranean diet!
Not everyone has a bad reaction to hot baths/showers. I LOVE mine and they help me loosen up. I can't handle hot weather but I will never give up my showers!!
Hi sorry about your diagnosis, l have been living with MS for about 13 years, until the begining of this year I worked as a letter carrier ( walking route) I also rode my bicycle to and from work. It is my belief that the exorcize helped to keep me as relatively healthy as I did ,for all those years. I was able to continue doing that walking route 8-10 miles a day + 6 mile bike ride everyday, and have had foot drop for the last eight years. I use an AFO brace to walk and ride. But it wasn't the MS that forced my early retirement but rather heart issues genetic on both sides of my family. Hope this is helpful and not too whiney Robert
Thank you for your message! It’s encouraging that you have managed to stay active, and found a way to cope that suits you. I’m sorry about your early retirement- but very glad it wasn’t due to MS . I’m sorry about your heart issues. It’s not whiney at all , and even if it was we are all allowed to moan every now and then
Bronwen
in reply to
Hi Bronwen, I appreciate your thoughtful and lovely response, I think you're going to find a lot of encouragement and support here, and your input already greatly appreciated. Robert
Welcome to the forum, bronniee What helps me the most is a complete approach of watching my diet, trying to exercise, using a DMT (disease modifying therapy) and engage the assistance of my immediate family. They are understanding and help me with my 'ms'. In the forum, you have access to many posts. Just type in the search HealthUnlocked box in the upper right hand corner, and you will see any post that matches your query.
Thank you for sharing what helps you. I definitely think diet and gentle exercise is really beneficial in managing symptoms of MS. Thanks for the tip regarding the forum. That sounds very handy to answer questions quickly.
Welcome to the group. It’s weird how MS can present for people in so many different ways. My first symptoms were frequent migraines. I was diagnosed quickly. Come to find out, the tingling in my hands I’d experienced for years and my increasing klutziness were symptoms, too. I hope you are able to get a neurologist you really like who can help you manage MS long term. I also hope you are able to find a job that will be flexible enough to deal with the complexities of living with MS. My advice, personally, although it’s only my opinion, is to stay as active as you can and eat healthy. At the same time, listen to your body and don’t overdo it. We pay the price when we do.
Yes, very strange. I first noticed how sensitive my skin was to touch and how I was generally in pain all the time. Very strange. I now struggle with more symptoms, including incontinence. This can be very hard to deal with, at any age but especially at 21. Thanks for sharing your symptoms. I definitely agree with exercising and listening to your body is so important. Thank you for sharing, some really good information.
I’m sorry you are dealing with all this. I agree, incontinence is one of the more frustrating, and sometimes embarrassing, symptoms. Ask away with questions or sharing thoughts. There is most often somebody who can relate!
Bronnie you found a super smart and supportive group of people here! Welcome! I was 28 and 5 months pregnant with my son when I was diagnosed. I think the pregnancy helped me get a same day diagnosis from the ER. My OBGYN kept brushing off my sudden vertigo and told me to go home and rest. Well, I’m hardheaded😌...so I called 911, after my nap of course. That was 2008. Avoiding hot showers after I workout certainly helped. That was my number 1 trigger when I taught Zumba. Also, a 1hour nap goes a long way.
Yes, I have found it very helpful already so far! I’m glad that you were diagnosed quickly, although it is not a nice thing to be diagnosed with it’s nice to know what is going on with your body. Sorry you were unwell during your pregnancy, I hope you are managing to cope these days and have found things to help you. I agree with the hot showers as steam can sometimes drain me. Again, totally agree with the napping. I am partial to a nap! 😴😹
Sorry to hear of your diagnosis. Sounds like you are being proactive, not reactive. Please keep that mindset, it will help. I have PPMS with several symptoms. My least favorite is that I can't walk w/o forearm crutches or a walker and incontinence, Not a good combo. As far as what helps, I love getting into a cool to cold swimming pool and excercising. and especially stretching. Warm water makes me feel awful as does warm weather. If I know A physical day is ahead of me I keep ibuprofen on hand. Its not much but it helps.
Thanks for your kind message. I’m glad that swimming pool helps. I love to swim also! I’m sorry that you are finding mobility difficult, but glad you have something to help. I am currently flitting back and forth between a stick and no stick. I know all too well about the incontinence as this is something I find difficult too and rather embarrassing. Take care!
Glad you advocated for yourself and can now receive proper care while you are still young. Took 30 yrs of being told I was just too sensitive and nothing was wrong w me 😝I often wonder where I would be had someone taken me seriously earlier but need to remember I am fortunate that strides have been taken during that time so hopefully the next 30 will continue to be stable w little to no progression.
So many amazing and intelligent people who are battle tested when it comes to MS are within this forum. You never would had known this forum existed had it not been for the MS diagnosis.
My apologies that you have received this news at such a young age; it can be a blessing and a curse, just depends on how you look at it.
How I would look at it, you are young and strong and that gives u a fighting chance to keep MS in its place. Exercise and diet are very important.
I was diagnosed myself last year-I’m on ocrevus. One full year of meds- no new lesions at this moment! My first MRI looked like a Christmas tree 🎄- it was all lit up! 😅
Support systems are important. And this forum is just one more to have in your corner! 😊
I had vision issues and the Ophthalmologist tested me and said that it wasn't a problem with my eyes and then sent me to a Neurologist who gave me an MRI and spinal tap which identified MS. I was 26 and my vision was my first symptom. So, it was quickly identified and I didn't have to pester Doctors fortunately. I have never had a flare-up! My syptoms were mild and consistent. I do currently have an issue with heat (even a fever!).
Welcome to the blog! Most of us can relate - not diagnosed for years. I actually saw a neurologist with a name of a famous serial killer who said there was nothing wrong with me.You are lucky that you were diagnosed relatively fast (there are people here who had not been diagnosed for decades).
Now, you should pay attention to what this blog says about nutrition. It's key. You will have to find your own diet. I am going to tell you about the anti-inflammatory diet that I follow - no sugar, dairy, gluten, peanuts or oranges.
Taking Alpha Lipoic Acid 600 mgs twice a day has helped and taking Vitamin D and B12. The Lipoic Acid helps my tiredness and The vitamins help my Myelin Sheath. Warmly,
The book Awkward Bitch is a light book about the author’s struggles with MS. I think it’s a good read. I heard about it here on this site ( i also learned about trevor wicken here)
Hello, bronniee , and a big welcome to the club to which nobody wants to belong! Yet here we are. I have little to add to what all of my compadres have already stated, but here goes. I am very sorry that you got your diagnosis at such a young age. I had always heard that MS strikes mostly younger people in their 20s and 30s and sometimes in their teens, but I was diagnosed at age 57, ten years ago. My symptoms were weird; it felt like ice water was running behind my face, and my hands would uncontrollably fly up under my chin with the fingers curled. We happened to be on vacation with our sons at the time, and they wanted to take me to the ER, but I knew that it was something neurological so I waited until I got home. When I went into the dr, who'd been treating me for unspeakably horrific migraines, he advised that he thought that it was some kind of viral or bacterial syndrome, which seemed a good guess because my friends and I used to ride our horses in the woods and into lakes, and we lived in South Florida then. He also said that it could be MS, but it probably wasn't . So they took 10 tubes of blood to run tests, also a stool and urine sample to test for heavy metals, etc. The MRI told the story. I went up to a dr. at Duke University Medical Center and he confirmed.
Royce is right; you need to talk to your treater about starting a DMT. And the first thing you should do is find a neurologist who is an MS specialist. General neuros often don't know how to deal with this disease. I don't know where you live, but there are plenty of really excellent MS centers around. DMTs are not right for everyone, but you need to start the conversation. As to relapses, the only known medical cures involve the use of steroids. The most common is a 3-day infusion of solumedrol. Or my current neurologist uses 3-days of a very large dose of oral steroids. There is also Acthar Gel, which is a 5-day course of injections which you give yourself subcutaneously. I found that it works very well to stop the downward spiral of the relapse, but it is very hard on the adrenal gland. I have an adenoma on my adrenal gland and prolonged use of steroids for the migraines and the MS have wrecked the bone under my kneecaps. So I quit using the Acthar. I have now transitioned into SPMS from RRMS, and I haven't had a relapse in over a year. I am now on Ocrevus; I had been on Tecfidera but it stopped working.
Symptoms vary with every person. There is a whole panoply of symptoms and everyone gets certain ones and there are always variations. You said you like hot baths; I can't stand heat, especially along with humidity. Fatigue, numbness, tingling, pins & needles, and most of my lesions are on the cord and the cerebellum so I have total lack of balance and the resultant falls . A lot of folks have what we call cogfog, and I know that I don't think as fast as I used to and I cannot multitask any longer. And I understand about the pain; some days I just hurt all over from head to toe and it's completely undefinable. On those days I simply eat some medical cannabis gummies (I hope that you have that in your state), relax and watch TV so that I can have a completely mindless day. I have found that lack of enough rest sets those kinds of days off, but I also find that exercise and movement are extremely necessary. My normal routine is to ride my horse every morning (at least 5 days per week); aqua therapy; PT, and the gym. I am always moving; I feel that if I ever stop I won't get started again.
Hope this helps. Sometimes it's good to share experiences, because undoubtedly you will find others who have the same ones. The people on this site are very proactive about their disease. They are intelligent and insightful, and most of all, we share with and support one another, although most of us have never met in person and don't know one another's real names! Here you can definitely feel understood because we all walk in one another's shoes. You might find that even those who love you the most simply sometimes don't get it. But everyone here does. We give support without judgment. And don't be afraid to talk to your doctor. We don't give medical advice here, just lots of friendship and understanding. Welcome and good luck on your journey.
Hi Bronniee, welcome to our group. Sorry you are having to deal with this at such a young age, but you are blessed with all the progress that has been made in dealing with this disease. I am glad you are on Ocrevus. I am sure you will find it helps with slowing the progression of this disease. I would suggest that you make sure that your neurologist specializes in MS. I think you
Opps Bronniee, my fat M S fingers hit “ reply before I had finished. Anyway, I think you will find a neurologist who specializes in MS will guide your treatment the best. Mine sent me to a Physical Therapist who specializes in MS so my exercises and treatment were geared towards my specific symptoms. I too suffer from spasms and restless legs. What helps is Gabapentin and Ropinolol. I sleep through the night when I take them. As far as hot baths, it is true heat is bad for most of us with MS. I love hot baths and so take them at night before I go to bed because it relaxes me. Also, what I have found since I was diagnosed 9 years ago, is that doing things takes a lot longer. Be kind to yourself. Doing anything with MS is like doing it In quicksand. It is doable, just takes you longer. I tell my husband “ if I tell you I am just running in someplace and I’ll just be a minute”, I am lying. There are also, Physical Therapists who specialize in bladder and incontinence issues. Very helpful. As is this site. Keep exercising Good luck and God Bless
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