Any Bees out there with MS? What were/are your symptoms?

posted 3 years ago in Wellness
Post # 3
Member
6273 posts
Bee Keeper
  • Wedding: October 2013

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.

Good luck!

 

 

Post # 4
Member
2831 posts
Sugar bee
  • Wedding: September 2014

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
Member
652 posts
Busy bee
  • Wedding: June 2012

@NurseMandie:  

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. Frown 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
Member
3084 posts
Sugar bee
  • Wedding: July 2014

@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. 

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