Torso/Rib Numbness and Weakness

[MSW1963]

I'm having increasing numbness in the entire torso area. I can only describe it as the sensation of having an invisible string around my torso area, weighing my torso downward. It affects my posture, gait and is limiting mobility. I'm also noticing new bowel sx's that coincide with the new sx.

I've had the MS Hug for a couple of years, which seems to have been replaced with this more wide spread numbness.

Anyone else have anything similar?

[MSW1963]

String Theory

A more accurate description is that the string around my torso is attached to the ground and it's 3 1/2' long, but the distance between my torso and the ground is 4'.

[ItsOnlyMe]

A more accurate description is that the string around my torso is attached to the ground and it's 3 1/2' long, but the distance between my torso and the ground is 4'.

Yes! Yes! Yes! Your description is excellent! I've long suffered from this and even though I'm no longer ambulatory, I feel as though there's a bungie cord pulling my torso downward as I sit all day.

[MSW1963]

stevenelliot, so glad to get a reply for my obscure description of sx's! Neadless to say, I'm not glad you've experienced the same, but misery loves company?

I'm ambulatory, but my attack of gait apraxia, (stooped posture and shuffeled gaite), and MS hug that has evolved to an easing of the hug, but with increased numbness in torso area, seems to be progression of my mobility in general, and inpaticular in the course of this 'evolution' of improvements in hug sx's with worsening torso and gait sx's.

Curious if your experience includes improvements with some sx's and worsening of other related sx's, for instance improvement with the hug but worsening torso numbness and the sensation of a weithg hanging from the middle of my chest and weighing me downward. This must be the worst description ever, but it's the closest I can get to what it feels like.

Thanks again!

[MSW1963]

BTW

I'm experiencing bowel problems and more pain than usual. Curious if your sx's follow the same pattern and what if anything your MS doc has indicated your sx's are related to or responsible for.

Thanks again!

[MSW1963]

Clarify again...

More Pain=more back pain and hip joint pain, with knee and other joint pain as usual, and bowel problems. Asking a lot, but this has been a slow decline for the past 2 yrs., and my doc is not as forthcoming about things as I'd like.

For instance, I reported 'not able to sand up accompanied by short type stumbeling steps' for months during office visits, but until it was full time and I presented with these sx's at my infusion center, my doc just smiled, shook his head and volunteered no info.

My infusion nurses refused to admin TY and referred me to his office. It was a JCV/PML scare and I had emergency MRIs and blood work. Both negative for CJV/PML.

My post is 'all over the place', but I hope you can make some sence of it and provide some insight. I appreciate your reply.

[MSW1963]

Update...

Infusion nurses following Tysabri protocol asked about new sx's. I mentioned the one discussed in this post that I'm experiencing recently. Nurses wouldn't infuse without notifying my MS doc. This happens to be 3:30p Friday afternoon. MS doc ordered xanax prior to beginning my infusion.

As I was leaving the infusion center, the nurses asked if the xanax helped at all. I let them know I had a rx for xanax, and when I do take a dose, it makes the sx's much worse due to the slowing down effect, muscles not responding as fast, and weakness effect of xanas, all make the sx not better but much worse.

We all got a bit of a chuckle about the recommendation to dose me with xanax. One of those oh how pathetic chuckles.

[MSW1963]

While at the supermarket yesterday, I noticed an elderly gentleman making his way out the door. I noticed his shooped posture and gait, and realized it looked so much like the my 'string around the torso pulling me downward' sensation feels. I was sad for the gentleman and for me too.

[tellnhelen]

Have you heard What to do about it? (string) Do you think trying to get stronger will help?

[MSW1963]

Hi there tellnhelen, I know my core muscles are getting weaker over time. I was exercising regularly for a while, but the intentsity of the MS hug, difficulty breathing (TY related I think, in combo with the hug?) and now the 'string' thing have conspired to make exercising for core strength very sporadic, anything but regular.

I see my MS doc Monday and hope to learn more about what the 'string' sensation could possibly be. I love my MS doc, but he's not the most forthcoming type.

The string sensation seems to be a bit 'unusual', based on the responses I've gotten. I continue to post here as a diary of sorts, but it's good to hear from someone too.

Thanks for responding.

[tellnhelen]

Thanks for the response. I will be watching to hear what the doc says...I will continue to exercise and monitor my results. Let's post!

[MSW1963]

tellnhelen, just returned from the MS doc visit. I explained the 'string' sensation and recent months of constipation, needing to wipe even when I don't have to 'go', and bowel changes in general.

My clinical exam for spinal problems checks out A-OK according to my doc. He was very relieved with the results of the pin prick test of my spine and torso.

Still frustrated because he had no answers, no explination. Put a referral to a gastro MD, but I'm reasonably sure that's not the source of the problem.

I did reminded him of gait Apraxia that I reported to him for many months with no concern, just some incidental thing he ignored?

Until I shuffeled into the TY infusion center and the nurses refused to infuse without Neuro's exam/approval. All h@ll broke lose because MS doc thought the stooped shoulders and shuffeled gait was PML, emergency MRI's etc.

I thank my lucky stars MRIs were negative for PML. I was dx'ed with Gait Apraxia, which I learned today is the result of frontal lobe lesions/damage. I was afraid of that due to the implications of dementia associated with Gait Apraxia.

Anyway, if my 'string' experience is anything like the Gait Apraxia experience, it may be a while before I present with sx's that get my doc's attention.

Sorry TMI, I know.

[MSW1963]

Hours and hours of searching, and...

I found several references to 'Apraxia of gait and trunk movements'.

[MSW1963]

I'm slowely coming unravaled, my brain is reeling since I made the association with GA and loss of trunk movement.

I just put a call into my MS doc to ask about the possible association with GA he dx'ed a year ago and now the loss of trunk movement/sensation/string feeling.

I'm really pissed. I think my doc withheld this info during my OV on Monday.

[MSW1963]

I realize that constipation and respiratory problems are possibly related to the loss of trunk movement, based on reading I've done on GA & loss of trunk movement.