Hi there...new to the site. Diag last year with MS and then with POTS. My dueling combo has made things interesting.
I havenât worked my true job in nearly 2 years and at all since April this year, but Iâm not retired yet. Still fighting for a chance to make it back, but accepting that life will give me what I need...not necessarily what I want.
That said...itâs been extremely challenging for me to adjust. I didnât realize how much of my self worth was tied into my career and my perceived ability to âdo it allâ.
I hope to connect with others who understand the challenges of these âinvisibleâ illnesses and who understand what itâs like to have to accept new limitations when you still believe you can overcome anything. My whole life nothing lit a fire under me like someone saying âyou canâtâ...Iâm not so sure that aligns with acceptance of disease progression...more so with my friend denial. đ
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Oceandream
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I'm sorry about the double whammy you've been dealt, but hope you will find lots of support for the MS side of things. MSAA has terrific resources and our members are very helpful and supportive.
Welcome. I stared on here yesterday, everyone is very friendly and supportive. I know how you feeling. Living for so long as a superwoman and super mom than have that stripped away to this new you can be very challenging. Just remember that the statistics of ms patients becoming completely disabled is very low. There are so many myths about the outcome of our condition that itâs hard to stay optimistic at times. Best of luck and always stay positive and rest rest rest.
Iâve been diagnosed with MS by 3 neuros and told by the 4th itâs RIS (radiologically isolated syndrome) and he ran his own slew of tests and slapped on the secondary of POTS (postural orthostatic tachycardia syndrome). He believes the majority of my symptoms are POTS related. I donât exactly agree with him either. But, I tend to lose confidence when doctors give up. He basically said, âsee u in a year for mris - unless it gets worseâ.
Iâve had vertigo for five years and the sudden onset shows no signs of why (except the lesions in my brain that went unnoticed until I did another set 4 years later for all my new unexplained symptoms).
Iâm not taking meds. Iâm not convinced. I tried tecfidera for 6 months but it was very rough for me.
Right now Iâm focusing on rebuilding my support system and learning more and being the healthiest me I can.
Welcome Oceandream ! I've been there, done that, with the vertigo. Have you considered trying one of the other MS drugs that have minimal side effects like Ocrevus or Copaxone? Best of luck to you.
Iâve considered it. At this point Iâm not interested in taking medication. I was diagnosed by two nueros with MS, then told by a specialist no, then she said yes, then told by the next specialist âprobable msâ and then RIS (radiologically isolated syndrome). So...heâs not saying I donât have it, just he doesnât think active in a long time and he thinks my symptoms are related to other things. It all feeds my denial. đđđ
I had a bad reaction with techfidera as well and also Copaxone. I'm on Aubagio now and love it. It's a tiny blue pill I take every night with all the other meds I'm on. My view is to keep trying until I found something that didn't give me a bad reaction!
I'm on Aubagio now. I really like it and it has not reacted badly at all for me. It's kept things from progressing for 6 years now. Just recently I found out there is some progression but nothing has been decided about changing meds. I'm hoping not, but we shall see.
welcome ...hope you get the answers that you are looking for ...maybe you should try a different doctor and maybe you will get the answers and get the right meds to help you ...we all on here know where you are coming from and hopefully someone can help you with all of this bs....sorry that you are having to deal with all of this ....take care and realize you are still yourself ...
Thanks for saying that âstill myselfâ bit. Itâs resonates. As for a new doctor...I plan to...eventually. I havenât been doing much with my research or testing since may of this year. I needed a break. Joining this group is my first step back into it.
Welcome! I think understanding that you relate at least some of your self worth to your career is a start to finding a way to cope. Don't downplay all the years you did make a difference with your career.
Have they done other testing for MS like a lumbar puncture or visual evoked potential? Did you wear a heart monitor for a week or two for the POTS diagnosis?
Also wondering if you live in the US or another country as that can somewhat change suggestions and we have people from all over the world here that could give you ideas.
Yes Iâm in the US. Yes to the LP - itâs what confirmed things mostly. Yes to evoked potential but that one was normal. My father has RP (retinitis pigmentosa) so I have had many tests and even saw a neuro-ophthalmologist but she said their was nothing neuro to cause my issue with seeing multiple images at once.
I appreciate your thoughts and advice. Itâs true that I can hold onto what I did. I wasnât ready to retire but Iâm very thankful that Iâll likely be approved to do so - since they arenât letting me do my job anymore.
Did your neuro-ophthalmologist find anything or anyone else see anything that explained the vision issues? Iâve been told I have a lesion in the vision center of my brain, but Iâve also been told I donât.
Welcome and sorry you had to meet us all this way. You will find much support, encouragement and information here. Sounds as if you were very successful in your career, so I am sure you will be equally successful in adapting to your new limitations and lifestyle. I have found the most challenging part has been helping your loved ones adapt to your limitations while still honoring and giving you your independence. It takes time, patience and understanding on everyoneâs part. I too suffer from double vision without my glasses. After much trial and error my eye Dr fixed my problem with prism in my lenses and â slabbing offâ the lens of the trifocal in my stronger eye. Not a problem anymore. Hang in there and God bless you and give you the strength to handle your new norm, whatever that is
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Hello Peeps of MS and beyond...
My letter to the ânormals.â
Hello!
hi everyone!
HELLO AGAIN EVERYONE
