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highlander
2 weeks ago

@theresa_baima
Basically you have to re-learn how your body functions.
My rule of thumb is, if I’ve never had it before give it a couple of days.
Unless it’s really painful, then speak to your nurse or GP.
You’ll slowly work out what’s what.
But keeping a list of things may help if it happens regularly.
Under your post above click on the box I’ve added marked relapse that might help you out a bit more.


elisabeth_turner
2 weeks ago

@theresa_baima I agree with @highlander about keeping a list. I have never done it, but I’m going to start. There are SO many little things that have popped up over the years that I think are MS related but not sure. Then when a get my annual 10 minute apt with the neurologist I forget to mention any of them. I really wish I had written all my symptoms down, especially as my memory is now pretty shocking!


theresa_baima
2 weeks ago

@highlander and @elisabeth_turner
Thank you!! Keeping a list is crucial. I have a notebook dedicated to MS, appointments and phone calls. Everything is tracked. I find myself getting frustrated when I mention that I have this symptom or that and the neurologist will say that it is not MS related. For example, I have something going on hormonally. I have adult acne, lower abdominal pain 14 days before my cycle, terrible, terrible mood swings, and more temperature issues. Neurology said not MS. I saw a gynecologist and was put on a strong birth control. He thinks I may have endometriosis, but that is not a diagnosis by any means. Then, I’ve had sleep issues and it was making me incredibly foggy and fatigued. Had a home sleep study and I have mild sleep apnea, which was making the MS symptoms worse. I use a CPAP now and that has really helped. It’s just a lot to muddle through.


nutshell88
2 weeks ago

neurologist confuses me
in the past i had hand weakness half tongue never tastes
before of all optic nerve inflammation
vertigo
double vision many times

they say only official relapses i had was optic inflimation and vertigo and all other symptoms are effects of the main relapses
i feel its not related
but they said other symptoms ive had might recover alone optic nerve inflammation vertigo needs steroids
thats why its main relapses


theresa_baima
2 weeks ago

@nutshell88 thank you! They ARE confusing.


itsmewithms
1 week ago

My issue initially was that I would just label something “MS” and figure I couldn’t do anything about it. I asked my Neuro if the weakness in my left arm was due to MS as I had a hard time raising it above my shoulder level for a length of time…like moving clothes around in my closet and moving hangers right and left. He said – “no” – not MS…see a GP and likely PT.

So I went to a general practitioner and she said I had a nerve issue and to see a massage gal and do yoga. I did the massage and she said my 1st rib was not staying in position and was rubbing against my collarbone which would pinch the nerve that runs down to my hand. She said to see a chiropractor.

I went to the chiro several times and he got the rib in position, I did exercises to strengthen the area and keep it in position. No more issues there. It was not MS.

So the lesson I learned is to not just blame everything on MS and throw in the towel. Ask questions, research and be proactive.


theresa_baima
1 week ago

@itsmewithms you are so right! If there’s anything I’ve learned so far is that you gotta stay proactive!!


sfrox
1 week ago

@theresa_baima it’s pretty easy to keep a list once you have a system. Somehow they are also calming – you get some perspective and you can give your doctor dates and such if you do end up addressing it with them.

With MS, symptoms are one thing, but worsening symptoms are another. I have had some horrible pain but I knew it was from existing damage so just kind of did self care. Right now I have an ergonomic injury and i wake up with really bad neuritis in my hand. I know it isn’t MS.

I think it alot depends on your level of familiarity with your body and to a degree our confidence in our body. MS really makes us think about our bodies, and not always in a bad way. Wishing you the best in sorting things out!


theresa_baima
1 week ago

Thank you, @sfrox! This journey has also taught me a lot about self care and how to really listen to my body. I didn’t do much of those things before. Now I know that I need and deserve self care and self love.


sfrox
1 week ago

@theresa_baima said
Now I know that I need and deserve self care and self love.

Right, which translates in part as eating well and exercising to our best ability, and not letting MS define us.

I used to think everyone without any diagnoses felt great physically all the time. That just isn’t the case. Another part of the equation for me has been to realize my perspective on the odd things my body does also contributes to my well being. It’s not easy to stay calm when we know MS is lurking, but it’s possible SOMETIMES.

Take it easy and best of luck in MS and life to you.


shtanto
1 week ago

Yes. 9 years in, still not sure. My mental side has been problematic of late. I went into a private hospital today and asked if they have any psychology or psychiatry. The didn’t have any. I’ll go to my GP tomorrow but I won’t know what to say or how to say it exactly. I’ve been trying to get help for this for 3 years on and off. My face is sore from mashing my head into the wall.


samyj
1 week ago

@nutshell88
Hi, I have similar symptoms to you. Started with labyrinthitis, when half face and tongue was numb. Tinnitus and walking sideways. Thought it was a stroke. Then optic neuritis the following year, lost vision in one eye for 6 weeks and dizziness. Have recently had two relapses in 8months, always affects balance and have dizziness and double vision, which can take weeks to recover normal vision. Hand numbess, pins & needles in hands & feet and vibrating legs. Perhaps we have lesions in same areas in our brains, that cause some of us to experience same symptoms. Have mild symptoms sometimes, but they are worse and more frequent when relapsing.


blagaman182
1 week ago

My nurse says basically presume everything is not me. (I use common sense though) it’s really hard to understand it all. I saw my neuro last week and even though I have new stuff going on (hand pain, feet pain, achey muscles) he says it’s not new and is just damage from old lesions. Confused me because I thought it would of shown up when I had new lesions?

I write everything down but personally don’t get too obsessed I don’t want to have ms on my brain all day everyday.


potter
1 week ago

I basically have given up on doctors, I will see them when I have to. When I have a odd pain or weird symptom I will do a lot of research on the symptoms. I want to figure out what it is and if there is anything I can do to fix it. I use legitimate sources like the Mayo Clinic. When I first got diagnosed I thought at least when I have a problem it can be treated. It didn’t work that way, if I went to my neuro first he would say is doesn’t sound like MS go see your GP. The GP would say it sounds like MS you need to see your neuro. When I had a scary relapse a few years ago I didn’t call my neuro until a day later. He saw me immediately because I never call about anything so he figured it had to be bad. Potter


nutshell88
1 week ago

@samyj
yes we probably do
i never had a stroke but experienced everything else you mentioned multiple times
but they all stopped the recent fee yrs hardly ever get any relapse buy still balance isnt good muscle deficiency
i get relapses once a year now is that good worrying idk :/


rogersouthall
1 week ago

Theresa, everything wrong with you in the future MS will be either the cause or has something to do with it
http://www.wholesorts.com is my monthly blog, take a read and please share as I try to give an insight to MS and coping with it, my contact details are listed if you need a chat


theresa_baima
1 week ago

@shtanto I’m proud of you for recognizing that you need some extra help! That’s a huge step! Good luck to you at your appointment! I hope that you get the care you need. I know of some additional things you can try as well!

@potter I feel like I’m already at that point. I will be switching medical groups soon; this particular group has let me down too many times. The big one was when I initially showed symptoms. I made an appointment with a GP (new patient visit). I had a list of 5 things that kept happening (temperature issues, mood swings, blurry vision, fog, and sleep issues), and the nurse told me to “stop right there. We can talk about 3 things, so pick 3 of the 5.” I immediately had a panic attack, so they wrote me off as just anxious and depressed. Two days later, my vision doubled and I was in the ER. One MRI later and I get moved to a bigger hospital. They said it looks like MS, let’s treat it with steroids. My normal vision returned after 5 days of infusions. After so many more dr. visits, I got the diagnosis. I mentioned the acne issue earlier too; saw a gynecology nurse practitioner to get a referral to see a gynecologist (hospital/insurance protocol). She asked me if I had tried washing my face. Again, I was dismissed and began to cry. Luckily, I brought my mother this time as a witness. She was also amazed at how they treat me bc I have something that they don’t fully understand.

@rogersouthall I will definitely give it a read! If you’d like, I can share it on my Instagram as well 🙂 I’ll happily do so for any of my shift.ms folks. 🙂


shtanto
1 week ago

@thersa_baima Thanks. I’m in my GPs waiting room now. He has the door open so I’m listening to what he’s saying to the patients ahead of me. I’m not sure what I’ll say when I get in there. I don’t think anything much will change.


rogersouthall
1 week ago

Theresa thank you and I would welcome you sharing it anywhere as getting people to read it is the hardest thing, so thank you, good luck and please remember, I am contactable anytime

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