Walk this way?

[TtWwOo]

I am just trying to get some perspective from others on how quickly their conditions may have deteriorated. 6 Months ago I was doing great--my strength, endurance, and energy were excellent even though I had lost weight.

Now, I am constantly tired and can hardly walk. It is the walking which has me concerned. Initially, it was some tingling in the legs. Then I started having problems walking long distances--I noticed muscle fatigue, mostly in my one calf. Now, I can hardly walk a block--my strides are noticeably shorter and it takes triple the exertion. The muscles in my thighs are starting to go away and the weakness is getting much worse. I fear I will not be able to walk at all in a couple of months.

I have another EMG scheduled in a couple of weeks, but already know the outcome. Can anyone else relate any similar stories? Russ, you mentioned that you now need canes to walk--how long was your onset? Anyone else experiencing similar problems?

[powder pig russ]

Wow! Sounds too familiar.
I can't answer "from onset" since certain symptoms have been progressing for 20-30 years. However, I only saw a doc about 6 yrs ago and noticed finger weakness 2 yrs before that. That said, when I first went to see the doc, I would leap up the 5 flights of stairs to his office taking them 2-3 at a time. Now? I would consider the stairs only in an emergency.

Get a cane (or two) and add pads to it so your ulnar nerve isn't further damaged. I picked up and used canes at first because I could go farther than without. Now, the canes don't matter much since I can't go far even with them but they're even more necessary now than before.

You should also consider asking for a prescription for the canes from the neuro or one of his/her cohorts in orthopedics/rehab. This will help support your SSI claim as it winds its way through the appeals processes. You have started that, haven't you? Don't bother with the attorney till you've been denied the 2nd time but make sure you have one after that point.

And if you're declining to the degree you describe, start planning your living space changes for wheelchair issues. Keep doing what you can rather than trying to keep doing the things you can't. You'll probably be less frustrated overall.

A good book I read recently is, Learning To Fall by Philip Simmons http://www.learningtofall.com/. Those around me appreciated it too.

Russ

[Kate P]

Russ,

So yours started in your hands? My husband only has one hand effected right now does it spread in everyone eventually?

Kate

[lynngar]

Hi Kate,

My MMN started in my left hand then went to the right...have hand some twitching in the legs at times, can't walk as fast as i use to, have fallen trying to keep up with others so don't try and keep up anymore..
as for spreading, we are all differant.. some have it spread sooner that others, and it showes in differant places, I have been told by the docs at UCSF, there is no cure, and MMN is very debilitating...I was told was luck because caught early...it was only in the left hand at that time...now in both hands, as long as get the IVIG every three weeks doing good.

lynn

[TtWwOo]

What is SSI? Disability? I have not done anything along those lines, as I was doing pretty well only 6-8 months ago. What all does this entail?

[powder pig russ]

SSI is Supplemental Security Income and pays benefits to disabled adults. You can begin the application on-line at http://www.ssa.gov/applyfordisability/adult.htm or print off a paper version and do it via snail mail. On-line works well and you can come back to the application once you've started it if you don't have all the info needed.

Kate & lynn, MMN characterized by the researchers as being mainly distal (hands, feet) as opposed to proximal (shoulder & hips) but I think that observation may need some revision. For me it is both but I didn't experience proximal till recently even though it may have been there all along.

Spreading: MMN is insidious. Despite efforts to control it, it marches on to its own drumbeat slow, moderate or fast depending on the case and treatment response. As some here who have been down the path of mis-diagnosis have remarked, "At least it's not ALS." We each count our blessings in different ways. I say, "Count the blessings and cope with the curses."

Russ

[TtWwOo]

Insidious is a good word. My MD has been convinced all along that I have MMN and not ALS, but this sudden drop-off in energy and strength certainly has me second-guessing him.

Is SSI only for those who can no longer work? Although I am not chained to a desk, theoretically I could be and so I suppose I could continue working even as my physical ability wanes.

[powder pig russ]

If you're one of those strange cases who has no elevated GM-1 antibodies, I might question him too. But if you do have the elevated levels (the distinguishing factor), it's unlilkely you have ALS.

"Able to work" may depend on your employer and what you were trained for and how your disability affects your work. If you're working in a situation, where accomodations can be made for your changing health, great. I was in outside sales so I couldn't keep going out to see clients and I have chronic pain which affects my ability to interact w. people, carry file folders, write, etc.

I recommend you take a look at the application and see where you fit in. And no matter the result, it is important to document how MMN affects specific tasks you do in the work for which you are trained. If, for instance, you are a pilot and can no longer fly airplanes, you may be granted disability status. If you subsequently can get work as an insurance adjuster and earn a check, you would still be a disabled pilot but your new income flow would override receiving benefits.

Russ