I have been given a possible MS diagnosis recently. I had an MRI last week that shows lesions. I was too in shock to ask how many. I am kind of waiting for the other shoe to drop as I've had a spinal tap and some bloodwork done and I'm just waiting for results now. I am not doing well mentally with this diagnosis. I am someone who loves spending time outside in the summer including going to the ocean. I cannot imagine never being out in the sand and the surf and the sun. It just breaks my heart literally into pieces that my favorite place on earth is going to be taken from me with this diagnosis.
If you have MS, the final chapter of your life is not over. I spent time on beaches and surf around the world since my MS diagnosis. MS is just a speed bump in life, but it does not have to control your life. I have a 4X4 power chair which I can, when needed, take to the beach. You have a rich full life ahead of you. Go enjoy it!
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MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Heat can affect MSers, but not all. MS affects each person individually. Sun bothers me due to light sensitivity, BUT I have always worn sunglasses to the beach. Beaches are also not summer season things and even during the summer, thee are times when the heat/humidity are great due to the air flow near the water.
As to numbness coming and going, no one knows what will happen when a symptom begins. Will it bring on a permanent problem? It is simply impossible to know. What I can tell you is that for me the seashore is still one place which draws me. After 35 years with MS, I expect another 35 years of beaches to enjoy- whether spring-summer-fall- or winter!
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MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Hi there. sorry to hear of your possible diagnosis, and I hear you that this is a terrifying time in your life. Dont let it stop you from doing everything you can do.
I live in Jersey, very close to the Ocean. If you know the east coast, you know we have some of the worst humidity in the world. And, summer, for me is TORTURE ..unless Im in the pool or the ocean. Staying wet and staying cool is the only way to deal with the heat. SO, no fears. You can go to the beach and you can play in the sand and surf! Just remember, if you get hot/ dizzy from the heat, and it can come on at any time, head for the water and cool off immediately. My husband and I travel regularly to tropical places. I spend the entire time with my ankles in the water or jumping in and out of the hotel pool...as long as I can get my head wet, I can deal with the heat...its being outside and being UNABLE to get wet, which drains me!
MS does affect everyone differently and it can change from month to month, actually day to day. You may even be heat sensitive and not realize it...I didnt realize I was until I started taking notice of when I felt the worst. Believe it or not, it was after a hot shower on a cold winter morning and then drying my hair. I used to break down and sit on the bathroom floor, dizzy and almost in tears. YUP. I was heat sensitive. Ever since I stopped overheating my showers and blow drying my hair on a lower setting, its never happened again. Unless Im out in August, unable to cool off. ......I do wear cooling hats and bandanas soaked in ice water when I can, and I absolutely hang out at the beach / pool.
SO, your fears are unfounded...the rest of MS is just as easy, really. You find "fixes" for whatever is put in your way. MS is a speedbump; and you can get around almost everything. Dont let fear stop you from living your life.
The reason I put beaches with summer and heat is that my hubby has a job that only allows us at the ocean in the summer only. It is a family tradition to go to this beach for decades and decades and decades. It is where my grandparents met. That is why I am so sad. I also love to take hot baths. This will also pose a problem. I guess I just need to pray to God that heat is not a problem with me. I am having a terrible time trying to digest this diagnosis.
The following user gives a hug of support to Allbluezoo: Hayley1986 (05-13-2012)
If you stay well hydrated and do things in moderation, I am sure that summer beach time will still welcome you. You will need to listen to your body and know when it is time to cover up or stay indoors.
Hot baths may be part of history for you. When I was first diagnosed, the doctor said no heat from the neck up. Nowadays I try to avoid it as much as I can. I have fond memories of hot springs in Japan which I could no longer dare attempt. BUT there are many more things upon which memories can be built.
Please do not allow your fear of MS to control your life. If it controls you, you may find yourself quite alone. You are supported by family and fellow MSers here. Stay strong!!
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MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Honey,
You can still go to the beach in the heat of summer! Just remember to stay hydrated and drink plenty of water and stay cool, meaning IN THE OCEAN! Nothing about having MS, if you do have it, means your life will change completely, you just have to make some small adjustments. Over 400,000 people in the US alone have MS and 95% of us are working fulltime, active and raising families. Im graduating from a post graduate degree next week, and I only started my college eduacation months before I was first diagnosed. 7.5 years later, im well on my way to having a doctorate. Ive gotten married, raised 3 kids and bought my first home. I work fulltime in a job I love and travel for both my job and personal choice. I live a very full life.
Its terrifying when you first hear this. I havent forgotten that feeling, it was only alittle over 7 years ago ...I knew nothing about MS and thought for sure my life would be over before I got to do the things on my list of things to do. Honestly, nothing really changed. Once you start to accept it, and get through the initial shock, it gets easier. I promise. Stick with us here, ask alot of questions, read all the posts and see for yourself. We are glad you found us and hope we can be of some help to you. We were ALL in your shoes at one time, and we are here to help.
Stay strong. Its not easy, but its not impossible either.
Sorry to hear about ms. Hope it is isolated syndrome which is one episode thing and goes away. Read the net for new research on the topic as the scientific community is bent upon to find cure for this disease, but after you are diagnoised and type of ms identified. Happy healing
Hello there. I am sorry to hear of your possible diagnoses. I do hope the diagnoses is wrong for you though. My husbaNd has ms he is 26 he found it very hard mentall to core with the diagnoses. But with love and support from me and his family he has come to terms with it a little more now. He was diagnosed two yrs ago. He has relapsing remITing ms and is on a injection each day to try and slow down the relapse rates. I loom that they say lack of vitamin d (sun light) etc is one sorce factor. Wheather this is true i dont know. And Also his neurologist said that Everyones ms is different no two people are the same with this condition so relapse sales vary etc hope this helps and i seriously wish you luck with your results.keep strong. X
Hi there,
I was also told recently that I may have MS. I also have lesions and my spinal sap confirmed the diagnosis. Tonight (14 May 2012) I took my 100th Rebif injection and as most people said, life goes on and by the grace of God and the support of a loving family, I live a happy, full, blessed life. To hear the doctors suspicions, was one of the hardest things for me and I allowed myself to feel sad for a day or two and then I decided that I was going to fight this thing with a positive attitude and a zest for life. I know doctors treat, but God heals and I am waiting patiently for my miracle. I have another MRI in June this year - a year after my first symptoms. Good luck and please just know, your life is not over. Tell yourself that you will not have a relapse again. There is power in our words and thoughts. I do not think of myself as someone with MS. It is just a suspicion my neurologist has and he may be wrong! God bless
The following user gives a hug of support to Mandy G: bbroke (05-14-2012)
Hi there,
I was also told recently that I may have MS. I also have lesions and my spinal sap confirmed the diagnosis. Tonight (14 May 2012) I took my 100th Rebif injection and as most people said, life goes on and by the grace of God and the support of a loving family, I live a happy, full, blessed life. To hear the doctors suspicions, was one of the hardest things for me and I allowed myself to feel sad for a day or two and then I decided that I was going to fight this thing with a positive attitude and a zest for life. I know doctors treat, but God heals and I am waiting patiently for my miracle. I have another MRI in June this year - a year after my first symptoms. Good luck and please just know, your life is not over. Tell yourself that you will not have a relapse again. There is power in our words and thoughts. I do not think of myself as someone with MS. It is just a suspicion my neurologist has and he may be wrong! God bless
Thank you all for your posts. Still trying to wrap my brain around this possible diagnosis. My doctor is out of town for his kids' college graduations so most of his staff is off too. I have so many questions for him. I wish that I could muster a positive mental attitude but am struggling. It would help if I could feel my face but the numbness won't go away. I keep praying that the facial numbness would go away so I could just feel a tiny bit normal.
You might try cold compresses on your numb areas. This is something my neuro tells me. When my hands are numb I soak them in ice cold water.
Your numbness could linger for a few days or it could be gone quickly- no one can know. What you can do is look at the blessing that you do not have a fatal disease and that this is something that you can overcome. Part of the process is to accept that you will never go back to "normal". Instead, you learn to accept your "new normal". When you can accept this, there is nothing to grieve. Count your daily blessings and you will find that even with the diagnosis, you are richly blessed.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
How do you find a MS specialist? Won't any neuro call him or herself a specialist?
MS Specialists are neurologists whose specialty is MS (they may also handle ALS). Other Neurologists may be a general neurologist or a Parkinson's Specialist.....the field of neurology has many specialties. Your local MS Association or Society chapter might be able to assist you. If you share your city or region in which you live, there are other MSers here who might be able to help too.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
MS Specialists are neurologists whose specialty is MS (they may also handle ALS). Other Neurologists may be a general neurologist or a Parkinson's Specialist.....the field of neurology has many specialties. Your local MS Association or Society chapter might be able to assist you. If you share your city or region in which you live, there are other MSers here who might be able to help too.
Off the top of my head: there is the MS clinic at Rush University and another at the University of Chicago. Most teaching hospitals have MS Specialists. I went to the University of Kansas Medical Center in Kansas City in 1982 and I still go there today.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
I called Rush University as I read great stuff about the head MS doctor there. The head doctor's next available appt. for new patients is in October. If I choose to see another neurologist that doctor will automatically become my doctor with no chance at seeing the head guy ever. Their other MS doctors are available to see in just a couple weeks but you don't know who you will get. I made the Oct. appt. but that seems so far off to me. Not sure what to do...
Welcome. 
