Post # 1
- Wedding: September 2014 - Lodge
Long story short I’ve had symptoms that I didn’t ever think were related to each other. I saw an Orthopedists about my numbness/tingling in my legs. They refered me on to Neurology who is starting to think its MS. I’m waiting for my insurance to come back with a prior authorization so I can have an MRI. I’m nervous and keep thinking why me? I was diagnosed with cancer at age 16, had my house destroyed in a tornado when I was 28, was just diagnosed this year with hearing loss….and now this.
I guess I’m just looking for either Bees who have similar symptoms without giving away what my symptoms are. And I guess some positive feedback. I know it can be treated but not exactly cured.
Post # 3
i don’t have MS or any connection to MS, but I’ve been participating in bikeMS, a 150 mile bike ride, for the past 8 years. The money we raise helps those with MS.
There are also MS walks with the big one being called Challenge Walk, a 30k walk.
Each chapter has their own bikeMS and walk events, so if you are diagnosed or just looking for a new challenge, it is a really great organization.
Post # 4
my father has MS. we thought he’d had a stroke, because he lost the ability to use one hand, and was dragging the foot on that side of his body as well. nope, it’s MS. he still drags his foot, and can barely use the hand. he sometimes slurs his words as well. hence why mom thought it was a stroke at first.
i hope you find out some answers!
Post # 5
I don’t have MS but I know several people with MS and have worked with individuals who have MS.
I have seen such a range of symptoms and disability that comes with MS. My great-uncle lived for many years and was fairly functional with his, he eventually passed away but at that point was in his 80s. My husbands aunt has MS and I didn’t even know it until his mom told us the other day. Apparently she has had it for years. I have worked with individuals with MS and many of them seemed to be doing fairly well, one gentlemen in particular was in rough shape, but he hadn’t been taking very good care of himself. He had terrible pressure ulcers and would not follow any of the recommendations the medical team was giving him. He would have still been in a wheelchair with limited independence, but he could have been healthier than he was.
My mom’s friend has MS and has had it for 20 years. Her main symptoms are tingling/numbness and fatigue. It comes and goes. As I’m sure you know (since you’re a nurse and you have probably researched MS online further since this has all started?) there are many different sub-types of MS. My mom’s friend is sometimes feeling really great and other times she will be tired and have numbness, but she never get’s worse, it’s stayed stable for 20 years. She recently got a new GP and she had been for an MRI about something unrelated to MS. I guess the radiologist reading the MRI had noted that she had MS in the report and the GP thought he had to let her know that she had MS. He sat her down to tell her this news, looking pretty distraught apparently, and told her that he was sorry but she has MS. She was like “Oh. I know! I’ve had it for 20 years…”. He was shocked and like “??? Why didn’t you tell me this before?”. I guess she just didn’t think of it because on a day to day basis she doesn’t feel it impacts her life that much.
I have also heard of other people (like my mom) who were told that they likely had MS… and they didn’t. It seems to be a difficult thing to diagnose at times. Since they are still looking into what is going on with you I would still wait and see what the medical team says. Perhaps it’s something else. My mom’s tingling in her legs ended up being related to circulation issues, but the neurologist she saw initially told her: “I can’t prove it yet, but I’m certain you have MS”. He was wrong.
I am sorry you have had so many things happen in your life. That must be so stressful. Perhaps the hearing loss could be related to MS? Unless they have already determined another cause. According to the MS website: “Hearing loss is an uncommon symptom of MS. About 6% of people who have MS complain of impaired hearing. In very rare cases, hearing loss has been reported as the first symptom of the disease. Deafness due to MS is exceedingly rare, and most acute episodes of hearing deficit caused by MS tend to improve.” So it sounds like it could be a possibility that the two could be connected, but pretty uncommon?
Post # 6
@NurseMandie: I don’t have MS, but my cousin was diagnosed when she was in her mid-teens. She had the tingling in her legs, had really bad eyesight temporarily, among other things.
She is right now on steroid shots and doing a lot better. You’d never know that she has it. She walks everywhere, goes out with her friends, and her MS doctor basically said she’s her star patient because she’s responding so well to treatment.
Post # 7
- Wedding: September 2014 - Lodge
@RedPandas: I’ve done some research on it and yes its such a broad spectum of symptoms. I have numbness and tingling in my lt leg, I have weakness in that leg as well as “drop foot”. That was my main concern when seeing the Orthopedist but they ruled out anything hip/leg related and sent me to neurology. When the Neurologist was asking me questions some of the questions he was asking seemed really random like the fatigue, bladder incontinence/urgency (I don’t have incontinence but I definitely have urgency which I never had before) and I’m constantly fatigued which is a newer thing. Usually if I’m really fatigued I can take a weekend to sleep in and then I’m fine and back to normal. Now the past few months its like no matter how much I sleep I can’t shake the tiredness, I’m attributing it to maybe weather related but I guess we’ll see. He also asked questions about my speech patterns. I don’t slur my words but I take breaks in my sentences and its something that drives my FI crazy. I never thought much about it until now. As for the hearing loss its actually hereditary. My mom lost her hearing in her early 20’s and had to have surgery to correct it by 30. I’m 30 and just starting to lose my hearing so by the time I’m probably 40 I’ll have surgery to correct it. Basically the small bones in my ears (called the stapes) are fusing together, which they need to be mobile because that is how you hear, the stapes moves and allows frequencies to hit the ear drum. Because mine are fusing together, they can’t move and so sound frequencies are having a hard time going to my ear drum. The surgery will correct this but my hearing isn’t bad enough yet to qualify for the surgery.
@colorofmyheart: I’ve read online that a lot of people with MS have thought they had a stroke and looking at the symptoms it is scarily stroke like. I am pretty sure I didn’t have a stroke or even a TIA (mini stroke) since I’m only 30 and in pretty good health, but then again stranger things have happened. My weakness/tingling/numbness is only on my left leg and typically with a stroke it would affect the entire side of which part of the brain had the stroke.
@ajillity81: I’ll have to look into these walk/bikes. I do walks for the Leukemia/Lymphoma Society since Lymphoma was what I had been diagnosed with. I defintely love fitness challenges that also raise money/awareness for illness/diseases etc. Thanks for sharing!
Post # 8
- Wedding: September 2014 - Lodge
@FoxyBride14: I’ve read that blurry vision is also a symptom but that’s hard for me to go off of because I wear contacts and I’m practically blind without them, plus I haven’t been to my eye doctor in about 2 years so my prescription is outdated and I’m sure my vision has changed. I’m glad to hear she’s responding so well. I like to exercise and do so 3-5 days a week. I have trouble with some things like squats, lunges, some of the balancing moves but I push through and try to do the best I can. I would hate if I had to stop or could no longer exercise. If I am diagnosed with MS I hope I can be functional and treatments would help me.