MS related most frequent physical conditions question

[hebyalf]

Hi, I am Astrid and I a senior in bioengineering at George Mason University. My senior design team and I were exploring if we could develop a biomedical device that could potentially help MS patients with a physical condition that comes with having the disease that has not been done before. Our professor told us to do some online research and to talk to MS patients to see what they need in order to see if we could come up with a biomedical device that could help with the specific need. I just wanted to ask you guys what is the most frequent physical condition that comes with having the disease that you did not have before you guys were diagnosed with multiple sclerosis?

[cnichols]

Biggest problem I have is showering. Have grab bars, chair struggle to get up.

[hebyalf in reply to cnichols]

Thank you for replying.

[katepoet]

I experience constant fatigue. Also, many of us have other conditions such as lymphedema that make things harder. I also am dealing with a wheelchair and have to do PT like exercises at home. I have trouble transferring some days, and my son has to move my legs for me to arrange me for sleeping.

I run a support group for folks with MS online - 2300 members - if we can ever help. Plus, am in Virginia.

[hebyalf in reply to katepoet]

Thank you for replying. Is there any way you can get in contact with your MS online support group so I can get even more feedbacks on the question that I asked above?

[katepoet in reply to hebyalf]

It's on Facebook - a private group there. I am Kit Minden there - my name. If you are on FB friend me and I'll add you if you let me know your FB name. There are 2 rules. Keep it private unless you have permission, and be polite.

[hebyalf in reply to katepoet]

I do not have a FB account. Is there any other way that I can get in contact with your MS online support group?

[katepoet in reply to hebyalf]

Sent you a message - will respond there.

[itasara in reply to katepoet]

I to joined the Facebook online MS group there. It's rather new. There are sometimes good reasons to join Facebook. I don't think you need to really get involved with all the stuff that people post on FB ( specially on the home page which is not the same as your individual page where you can have more control. I tend to ignore a lot of different posts in general, and if you don't like Facebook you can always limit who sees your Facebook page either just friends or just you yourself. Some of the groups Are very interesting. The MS group there seems to be pretty active. I'd like to hear what other people go through I get ideas frimothers, and hopefully some of my ideas are helpful to others. Just a comment

[jimeka]

Hi Astrid I live in the uk but my biggest problem is balance. I always want to fall backwards. Hope this helps and all the best with what device you come up with. Blessings Jimeka

[hebyalf in reply to jimeka]

Thank you for replying.

[StacyHayward]

Ditto on fatigue. Maybe some device to shock us awake again 😉

[lauranell2u in reply to StacyHayward]

LoL. But not like a shock collar. 😜

Although I have considered that!!

[erash]

hebyalf

1st thank you and your professor so much for coming to us about this project!

2nd kudos to u for bioengineering, as a women, at GM! My nephew is pursuing a bioengineering deg. At NC State. Very difficult and very competitive. ...I teach at your neighbor GW

While u r likely thinking of projects that aid physical deficits--balance, mobility, some of the lesser addressed deficits (at least from a non medication perspective) are numbness, neuropathic pain and dizziness due to both central and peripheral etiologies.

I personally suffer from Trigeminal neuralgia ("the suicide pain")that may be related to my MS lesions. I've heard of a last resort implantable nerve stimulator/modulator. More efforts along this avenue would be wonderful.

***My biggest MS challenge is related to cognitive deficits. It's what's recently forced me out of a long and beloved career. Can u develop an external brain that keeps me on task, helps me avoid distractions, and improves my working memory and processing speed? Happy to donate what's left of my mind to assist you with this 😉

Again thank you for asking. MS has many common issues and is also very different for each of us. So I'm sure you will receive great suggestions here.

Best of luck and success to you.

[rlh1974 in reply to erash]

erash you work for GM? Message me. I do as well. Would like to trade notes.

[erash in reply to rlh1974]

rlh1974 no, the researcher who posted this is at GM (George Mason University)

[rlh1974 in reply to erash]

erash HA! My mind isn't working today. Go MS!

[erash in reply to rlh1974]

rlh1974

No problem. It's hard to follow this thread sometimes MS or no MS 😝

[Morllyn]

Fatigue and muscle spasms are mine right now. Thank you hebyalf for thinking of us.

[Jesmcd2 CommunityAmbassador]

hebyalf hi and welcome!

Thank you for thinking of us, and doing your research here with us.☺ I hope you find plenty of answers here to run with.

I have to say for me it's the slurring of words. It comes out of nowhere and then leaves just as fast. Fix it!😅☺

The most common is the fatigue and spasms l think.

I wish you the very best of luck!!!

Jes🌠

[SueAB]

Thank you for thinking of us. I often think MS is a stepchild when it comes to new ideas. I have lived with MS for 30 years and my biggest issues are balance, fatigue and walking.

[goatgal]

hebyalf Recently TV advertisements feature a gadget that attaches to clothes and vibrates when the wearer slumps, thus reminding him/her to sit or stand up taller. I like that idea but want one to remind me to tighten my abdominal muscles. Though I am still able to type, I struggle to connect electrical contact points that call elevators, open garage and car doors, turn off alarms, etc. When technology requires me to swipe, wipe, draw closed etc., forget it! My iPad and I have an adversarial relationship. Wow, thanks to you and your team for asking!

[hebyalf]

I just want to thank those of you guys who have taken the time out of your day to reply to the question above. It will really help us when trying to figure out our device. Please keep the replies coming.

[greaterexp]

Wow! I think you and your team have chosen a very worthy subject, but a very complicated one! I don't know how you arrived at your course of action, but any aides for us could make a huge difference in our lives, even if it seems small. With the myriad S/S of MS, you have a wealth of choices!

Though my symptoms are relatively mild and change often, cognitive changes frighten me more than physical issues. Muscle spasms, balance problems, and lack of endurance with fatigue are very common.

We wish you all well with this project! I hope we will get to know about what you zone in on what the outcome is.

[greaterexp in reply to greaterexp]

May I add arm/hand weakness making things like sewing and playing piano difficult. Gross and fine motor impairment.

[Iona60]

Evening leg spasticity is a regular problem for me. Besides meds, I currently use a stationary peddler that helps me to extend my leg.

[CharlesHH]

Difficulty walking and getting off the floor which is related to the brain communicating with my hip flexor which I exercise but cannot make it work better . Poor walking gait leads to back pain, balance issues and crushing fatigue. If you can find a solution to normalize walking it would cure a lot of connected issues. Good luck !

[Good_enough]

I would like a way to exercise so that I do not lose my balance, so that my muscles do not become too fatigued, and can bring my heart rate up

[Jogibby]

Thank you for asking and your interest in helping those of us with MS. My most frequent physical conditions include: poor balance, walking is unsteady (more like staggering), debilitating fatigue, and heat sensitivity.

[Donna_uno]

Leg pain, extreme leg weakness. Annoying tingling in lower legs and feet. Thank you for caring about us.

[normwithms]

Loss of movement in my right foot and leg, balance, motor control in my hands.

[CalfeeChick CommunityAmbassador]

Wow, it's great to know that you are out there trying to help those of us with the MS. Sometimes we feel like we're all alone in our battle. Me personally, my legs never knowing if I can trust them to hold me up, because of numbness and tingling. Example, I forced myself to walk two blocks yesterday, and I woke up this morning and I'm tingling and numb to just above my knees. We were scheduled to go shopping, but that had to be delayed till another day. Also as I've stated on here, if there was one symptom I would get rid of it would be the bowel problems. I Think we all have some bowel or bladder problems, we just don't discuss it much. Thank you for your time. My history, I'm 68, was very athletic until last June when I went numb from my rib cage down. I had two rounds of steroids which lessened the intensity. After many tests/MRI's I was just diagnosed in December with MS. I was referred to the MS clinic at UCSF. Just started gabapentin two weeks ago and it's helping reduce the tingling in my rib cage and legs. Scheduled for more tests and MRIs in March and April. Hope this helps you. Lynn

[Fancy1959]

hebyalf, Astrid, this is Fancy1959. First and foremost I would like to express my heart-felt thank-you for choosing such a beneficial topic for all of us! It is an extremely worthy research topic that will be challenging to say the least since no two people with MS suffer from the same issues or suffer them the same way. We each have our own triggers and solving what pulls our triggers could potentially benefit tens of thousands of individuals with MS. The main MS related symptoms that I have that drive me the nuttiest are:

1. My Balance. It is horrible. I have taken 12-15 biug falls in the last two years. And of course the poor balance has greatly affected my walking.

2. I have very little fine motor skills left in either of my hands. Of course that is probably due to the fact that they are tingling and feel numb and swollen through my mid forearm. i also have no tactual sensation left in my hands. Everything I touch feels like sand paper. I can feel pressure, hot, cold, and pain, although the pain is somewhat subdued.

3. When the MS fatigue hits hard, I have foot drop and drag issues. My knees just don't seem to belong to me and refuse to bend especially when I over due it.

4. And last, since we are putting it all on the table, my incontinence is embarrassing and drives me nuts.

Thanks again! If you need anything else for your research, please don't hesitate to ask.

Yours In a Cure,

Fancy1959

[Lay24]

Fatigue so much energy was out and about now just tired takes time to have the will to get up and get things done sometimes.

[dmaskal1]

Thank you Astrid for sending us your request!

I become greatly fatigued very rapidly either when I’m expending energy physically or cognitively. I also dropped my toe when I was walking which often caused me to trip myself, but, physical therapy on the auto-ambulator corrected that so I don’t drop my toe anymore. I loose my balance when I am standing and moving around. I experience uncoordinated movement of my hands which causes me to often knock things over. I eventually had to take long term disability since my short and long term memory have been definitely compromised as has my cognitive ability to solve complex problems.

[jkoo4]

Can you do the same for ME suffers please , we get no help but get the same symptoms.

[Elle61]

Sorry I'm late getting in on this. I could use help getting my walker in + out of my Honda sedan . Then at the Doctors ,I get into the building exhausted at this point I could use one of their wheelchairs they provide but I have no where to put my walker. An attachment for the wheelchair to hold the walker would be great. I have no one to help me so far with my walker so I have to limit one trip ever other day. I know they have auto-arms that can be installed in the truck but how would I get back to the drivers seat?

[Sara2000]

Optical Neuritis was the beginning. The most pronounced symptoms that I have, that I didn't have before are: extreme fatigue, migraines/constant headaches, loss of balance and cognitive issues.

[rlh1974]

I wish there was things for exhaustion, balance and MS fog. Also, pain! My biggest symptom is Thoracic pain. So severe a feather touching me will make me cry! So an implant that could block pain. That would be my request! I appreciate you looking to the source for information.

Take care!

[faustkatrina]

This post may be too late. I just joined this site and reading the posts. Maybe a device that could warn a patient when they are moving too far out of their center of gravity. It could warn a person before the fall or loss of balance occurs. This may not solve a balance problem but could reduce falls and or retrain a person with balance issues where their center of gravity is and perhaps let that person know certain movements are putting them at risk.

Wheelchairs and walkers have been done, but there is room for improvement with these.

There is still no good device to assist with some typical weakness of the hip flexors that MSers experience. There are AFOs for the lack of dorsiflexion and i have seen one device that helps both hip flexion and dorsiflexion (that is mechanical and not electrically stimulated) but it is a bit bulky and unattractive. Something one could wear under clothing that is not detectable to others would help some of us walk a little further.

[Juliew19673]

Exhaustion and Spaticity for me are the most unrelenting of this condition. Good luck with this task - it is appreciated!