Hei, I'm Cecilia. I'm diagnosed with secondary progressive MS, I recently got blind on right eye it happened so fast, it's been very difficult that everything has happened so quickly. I used to work as an ambulance worker but not able to work anymore, I really loved my job I cried alot over it. I get very good help and support but things continue to worsen. Worst part in my opinion is the inability to do something you enjoy for days until you have a day where ms isn't the worst, iv lost weight but with help iv managed to solve that. Diarrhea all year round and medications doesn't help, side effects has been a round of it's own. Localized fever and pressure and you feel your cognitive self gets more and more distant to you, it's very frightening but happens many times a week, iv lost count of everything, the soft tissue next to bone hurting makes it feel like bone pain. I never look forward to next cluster migraine but it's coming, trying to do something you enjoy but suddenly hands just uncontrollably tremble and shake violently, a yawn and it's the another bedtime, then tiny bit free time and repeat, sometimes you zone out so much u can forget whole discussion at meeting with doctors or people and sometimes just pass out. Waking up to a cat or pet in general is a big happiness boost, winter clogs up my face and nose, feels like the flu every time I wake up, I'm not saying summer is better with the heat but cold drink in summer is better than warm ones in winter. I just woke up i hope it's informative even if I'm not at my best. I might not be able to reply quickly but give it bit time, I hoped I could share my journey, I don't really have much friends, bed most of the days. Thank you, nice to meet you all, Ill try to reply but give it bit time
This is Steve with the National MS Society. I wanted to provide you the following link which will tell you about some additional peer support options available to you. I hope this is helpful!
Hi Cecelia, Are you sure it is spms and not drug interraction giving you misery? A gastroenterologist may be able to prove what is giving you the runs. Do you have hypoallergic pillows and a mattress cover that keeps the dust mites away from your face? If you have rugs, have they been washed recently? Have you tried allergy eye drops or benadryl(generic works also) Lots of us with ms have environmental allergies. I bought hypoallergic pillows at Kohls, a mattress cover at Allergy Buyers Club as well as a LadyBug steamer to clean the carpets without soaking. If you have baseboard heat, have you vacuumed them? Cats are another allergen for me, our boys go out and in, and every time they come in we comb or brush them to prevent too much of their hair from getting on eveything, and we have light weight towels everywhere they rest so it is easier to wash their hair(though cleaning the dryer needs two eyes and a lot of patience) from the towel instead of trying to brush it off the furniture, just like babyproofing.
Also, do not get the pets too close to your nose or eyes or face where you can breathe them in for instant misery. Have you seen an allergist? You can find out what else you are allergic to so you can avoid those things. My list is dogs, cats, horses, dust mites, mold, goldenrod and oak pollen, our house is surrounded by oak trees so we never open the windows though fresh air is nice. And we have forced hot air, we got the ducts professionally cleaned and had an electrician/plumber install an ultraviolet light in the ductwork to kill any germs in there. So, I still have allergies in the house but not as exhausting as before, I am awake sometime. giggle.
So sorry to hear of your troubles. I came across an article online with treatment options for secondary progressive Ms, you can check it out by: clicking here.
. It gives you treatment options for all phases of spms which I think will be useful for you to review. I myself am still rrms as far as I know. I am on permanent SS disability and spend a lot time in and out naps when I am at home, as I can't seem to sleep long enough at the night. I try to use soothing aromatherapy sprays & oils sometimes which can help to some degree. So that may be of some assistance to you as well. I think this site is a great way to gather information, the people on here really seem to care so you've come to the right place.
Hope is like peace. It is not a gift from God. It is a gift only we can give one another. - Elie Wiesel
anywhere... thank you for posting the link it is a good read about progressive ms. It lets me realize how bizzare ms really is, the variables are so weird, like the Chinese menu, pick one from column A one from column B, no wonder it take years to figure it out. I have been lighting a scented candle too it is a nice effect to the sameness of indoors, wakes up the nose and that wakes up other senses that maybe are not connected to the ears and eyes???