Sometimes I get some very heart-warming or heart-rendering comments, especially on my About and MS Diagnosis pages at the top of this site. I think many of people’s multiple sclerosis questions are universal and so most can relate to what is being asked. And comments often echo what is on a majority of patients’ minds. Here are a few recent comments and questions I’ve received. I put forth my responses, humbled that anyone would care to know them. I’m constantly in awe of others’ situations and moments of enlightenment; thanks for letting me be a part of your MS journey, and you mine:
Terri Says:
Hi there, this is probably going to sound very strange but i just dont know what to do, i feel very alone and frightened to see my doctor to ask for help. i have so many symtoms and sometimes end up telling myself its just in my head and feel like im going crazy. im only 24 but at a lose end i have blurred vision dizzy spells, extreme muscle pain and can sometimes lay awake at night with muscles tightning cramping and twitching. i’ve had a few times where a certain part of my body just tightens to the point im unable to move it for days without it seriously hurting along side all my other symtoms, but after a few days it just disapears and i feel fine again and even more confused then before! have you any advise for me as i just feel as though if i walk into my docs and say i think i have ms that i will be laughed at.
Jen Says:
Hi Terri—
I don’t think this sounds strange at all. It actually sounds like SOMETHING, but the question is “what?” Since I’m not a doctor, I would suggest that you visit your primary care physician for a work-up. That’s how many MS patients start the journey towards diagnosis. If you find your primary doctor to be unhelpful, unknowledgeable, or unwilling to refer you to a specialist, then you might want to seek out a neurologist (an MS specialist) on your own. This type of doctor is the one who can diagnose multiple sclerosis (or rule it out.) I also suggest that you continue to pursue this until you get a satisfactory, definite answer. You may change doctors a few times, but make sure that your eventual doctor takes you seriously.
And please know that there are many of us MSers and others with conditions that are here to support you, whether you have MS or not. If you seek out a local MS organization near you, you may also find contacts for good doctors and/or support networks.
I’m hoping the best for you: feel free to email me or comment again. I’d love to hear how things work out. womenzhealth@yahoo.com
Dear Jen,
A friend i met a while ago revealed to me that he has multiple sclerosis.
I never new there was such a thing.
Except maybe once, but im not sure, i watched a movie with a lady ( a know actress) that had to sit on wheal chair in the end and couldn’t move. I’m not sure if that movie was discussing MS.
Can you please explain to me more about it. Can you just give me a brief description of how he (a person dealing with MS) goes through his day. What kind of activities i can do with him that would make him feel good and keep his morals high and make him smile.
He seems to be active and even sexually active how could that be?
Does this condition keep on getting worse or can someone cure from it?
I thank you very much for your time
Love,
B
Hi B–
Lots of things….
First, everyone is different with MS. Some have relapsing/remitting disease that comes and goes, and it can cause continual damage when it strikes. Do you know if your friend has relapsing/remitting MS or progressive MS? The progressive type often takes over after years of relapsing/remitting. It is a worse kind because it keeps progressing with no remissions.
Men often have worse MS cases than women, although less men develop it. But it sounds like your friend is still mobile. Does he use any canes, crutches, a scooter, or a wheelchair? Sometimes people with MS don’t need these devices all of the time, just during attacks. It depends on the person.
People react differently to MS, depending on how severe they have it. Some are hardly affected, whereas others are severely challenged (such as the woman you saw in the movie. I’m thinking it might have been Annette Funicello, who has a very progressive form of it.) The vast majority of patients have a moderate case, where they are affected but not severely enough to be in a wheelchair. I hope this is the case with your friend. Does he work? How old is he? I myself am home on disability, but I don’t use assistive devices on good days. I do get very tired from the MS, which is a common symptom.
What you can do for your friend is ask him what would help or cheer him. Does he need help with any chores? Does he just want you to visit and spend time with him? MS can be very isolating if a patient is stuck at home. Would he like to join a support group that you could take him to? I find when people ask me what I want/need then I can be specific and not have them always guessing and wishing they knew what to do. And sometimes just being there for support is fantastic.
About the sexual activity: this is a tricky area, because many patients have problems in this realm. Due to numbness in the genital region. Not all patients have this, but sometimes males can have problems getting erections because they lack feeling in this area. It depends on the patient. Others can be mildly affected and still maintain active sex lives.
Basically MS is a disease of the central nervous system (brain and spinal cord) where the body attacks itself (autoimmune) and damages nerve coverings. This causes all sorts of symptoms like numbness, pins-and-needles, loss of function in body parts, pain, vision problems, and so on. Some of this damage can be temporary and sometimes it ends up being permanent. We currently have several medications that HELP the MS, but there is no CURE at this time. But there is a lot of research going on and the chance of a cure in the future is good.
I hope this has helped a bit. Here are some websites that may also help you and your friend. Feel free to pass my website along to your friend as well. I like to provide MS news, support, and my own MS story:
www.multiplesclerosiscentral.com
www.nmss.org (the National MS Society in the U.S.)
www.msfocus.org
Maris Says:
Thanks for the Jethro Tull interlude (music video.) Happy holiday season!
Maris in Israel
Jen Says:
You too!
Mike Says:
My fear is that I might be fooling myself that I can handle the MS…am I kidding myself? My father- in- law had MS for 35 years and it was horrible on the family, so I can see the possibilities for me.
Jen Says:
I don’t think you’re fooling yourself. I think you are a different patient than your father-in-law and you just have to see where your path takes you. Yes, you may have a similar path as him, but it’s not a given. Thankfully MS is very individual and no two cases are exactly alike. This makes it difficult to know what will happen to you, but— JOYFULLY— you will not know what will happen and you can create your own life and live it the best that you can.
Thanks for reading, Mike, and I hope for your courage and individuality to take your life by the bullocks and LIVE.
