New clue?

[lydia]

To remind you all, my biggest issues are muscles stiffness & soreness, cramps, and 6 months ago had one neuro confirm subtle left-sided weakness (no easy feat given the absurdity of their strength tests), while a month ago the second neuro didn't detect any weakness. Yeah whatever.

I have felt for a while that my walking is precarious; the stiffness & soreness are concentrated in the back of my thighs and when especially bad I feel very very wobbly and weak. I overdid it two days ago and am still paying my dues (I am thinking it wasn't worth it).

Enough of the background----this is what happened: I couldn't get off the sofa. I had my laptop in my left arm and used my right arm to push off the armrest. Nothing. Tried again. Still nothing. Tried rocking a little to build momentum. Nothing. Put the laptop down and tried pushing with both arms. Nothing. All in front of a delightful teen laughing his a** off. While clutching his stomach and pointing. He had to pull me up. This is bothersome!

Is difficulty or inability to get up from a low chair/sofa an issue with your thighs, and if so, is it the muscles in the front or back (can't remember their names)? If not, what muscles contribute? Is it the abdominal muscles? I have been "pushing off" (accompanied of course by the prerequisite grunt) for quite a while to get up off low seats. But this was still an unpleasant surprise.

But on a happy note, my son was so entertained he made me promise a repeat performance for his girlfriend tomorrow. Gotta love him. :-D

Lydia

 

[olly]

hi lydia

i understand,i can not get up from a low chair or climb stairs any more.
i had chair raisers put on one of my arm chairs so i can get up from it.
a opt (ocupational therapist)should be able to get you some if they do them in the usa.

it is the hip girdle area that causes these problems,that is.............. lower abdominal muscles,hips,thigh muscles.
the problems we have are a common feature of this

 

[Zaphoon]

Lydia,

I have the same problems but not to the degree you've just experienced. I have to get a good rocking motion going to get out of the recliner and low seating sofas are a killer to get off, too. I think Caroline is correct with her answer.

Zaphoon

 

[planningguy]

I don't recall everyone's personal histories, and what they've been tested for, but the different flavors of myositis can cause weakness in the hips and make it difficult to rise from a seated position. A brief blurb on IBM from the Austrailia Myositus associations website:

Inclusion-body myositis (IBM) is found in more men than women. Signs of IBM usually start after age 50. IBM progresses more slowly than the other types of myositis as weakness happens over months or years. Most muscles are affected, including neck, hip, thigh, back, shoulder, wrist and finger muscles. Many IBM patients notice shrinking, or atrophy, in the arms and thighs as the muscles become weaker. Dysphagia (weakened throat muscles causing difficulty with swallowing) is a common problem for IBM patients. Weakness of face muscles is sometimes seen.

Just some thoughts...

Robert

 

[lydia]

Robert,
I had read a little about IBM way back when but at the time didn't think it applied. After your post I read some more and am a little bummed. IBM seems pretty nasty. It does seem to describe how I feel even more so than the mito thing. I don't know, maybe I am chasing symptoms. I listed some of the stuff I read about IBM followed by my experience with it.

The muscles in the thighs called the quadriceps and the muscles in the arms that control finger flexion-- making a fist -- are usually affected early on. [left arm and both thighs problematic for me}.

Common early symptoms include frequent tripping and falling, weakness going up stairs and trouble manipulating the fingers -- turning doorknobs, gripping keys, etc. [have frequent tripping and now two falls; left hand fine motor like that of a one year old]

... it becomes hard for him or her to bend down, reach for things, walk quickly and so on. [getting clothes out of the dryer kills my thighs, walking fast is a thing of the past].

Many patients say they have balance problems and fall easily, as the muscles cannot compensate for an off-balanced posture. Because sIBM makes the leg muscles weak and unstable, patients are very vulnerable to serious injury from tripping or falling down. Although pain has not been traditionally part of the "textbook" description, many patients report severe muscle pain, especially in the thighs. [feel as if the center of everything bothering me is in my thighs!]

Arising from a chair becomes difficult. Walking becomes more precarious. Sudden falls can occur, even from walking on minimally-irregular ground or from other minor imbalances outside or in the home, due to weakness of quadriceps and gluteus muscles depriving the patient of automatic posture maintenance. [installed a tile floor over the weekend and have alot of trouble actually walking on it. I feel as if I am on ice. The polished linoleum at work is also a hazard. How odd, both are smooth.]

Some where it also mentioned the frequency of atrophy in the forearms (have in my left) and in thighs (where I lost all my weight the past few months; could it be the dreaded "a" word?)....

(heavy sigh)

Lydia

Oh-sorry for the long post but I vote for making senior status dependent on actual *word count* of posts!

 

[planningguy]

Lydia,

I was just trying to illustrate some possibilities. Hopefully, I haven't caused unecessary stress. Keep in mind that IBM is pretty rare. The IBM description was just more descriptive in the material I read. What I was trying to point out is that there is a family of inflammatory muscle disease that causes weakness, atrophy, and difficulty rising from a seated position.

Always hoping for the best,

Robert

PS There is one other rating system for post quality... Its just harder to detect because very few of us would ever post stuff that would get us dreaded "red dot."

 

[olly]

hi lydia and robert.

many neurological illness's and muscle desease's share the same symptoms,thats why some are so hard to diagnosed and its a process of illimination.
i have looked into mitochondrial desease,ibm and many similair.
none are curable,some are treatable but they all cause progressive disability and complications with things like swallowing and breathing,some heart problems.
i was diagnosed with mnd,several years of tests ruled other things out.
but i n ever had a muscle biopsy and this has been bothering me for a few months now.
i am considering asking for a biopsy at my next appointment,thought at my last one when i asked about emg i was told i dont need any more testing.
the neuro at the mnd clinic said my neuro had done exstensive testing,including genetic and rarer desease's like stiffmans.
but the biopsy thing is really bugging me.
a biopsy will show if any of these desease's are present.
lydia, some of your symptoms do sound a lot like mine and your possible mito diagnosed got me researching it.

 

[lydia]

Robert, you didn't stress me. IBM just happens to be the untreatable member of that particular family of maladies (but untreatable does not mean fatal for those unfamiliar with it). I know better, but I have been picturing that once I cross the finish line that my prize would be a shiny pill that makes everything all better (or even kinda better). Simplistic and naive I know. As for IBM, age and a clean EMG are on my side here as well.

Olly, reading the similarities across all those possibilities is mind boggling. I feel like any diagnosed rendered would be drawn in sand anyway. I would push for the biopsy. It would drive me nuts thinking there was a stone left unturned (I am such a hypocrite offering this advice given that I am still avoiding GP who has now called me twice).

So what is a red dot? I don't think I have seen them...?

Lydia

 

[planningguy]

Olly - If it doesn't put you out, I would think about doing it, if only for the reassurance that you might have a much slower moving disease.

MND has not been considered a possibility for me (good EMG and good reflexes), but as I read different stories and cases, I almost wonder if doctors get to the point were they say, "Well... its probably a progressive neuromuscular condition, we don't know which one, but since we don't think its treatable a precise diagnosed has limited benfit." I think it does matter to the patient. I will concede, however, that in some cases the doctor really doesn't know.

Lydia - Below everyone's profile picture and other assorted info is a little green dot. If you let your cursor hover over it (depending on your browser and operating system) a little expression about that person being on "a distinguished road" pops up. It basically means you are in good standing on the forum.

Your detailed profile actually has a portion were the last post where you were evaluated. <EDIT> You can add to a persons reputation by clicking on of the buttons at the bottom of their profile panel for each post <EDIT>. On very rare occasions when someone has been particularly nasty or unreasonable the color of the dot can change, basically as a warning to other members.

I imagine the reason it is used so rarely is that people go usually from decent to SOB so quickly they normally get suspended or banned (ie why flag their profile when you save mouse clicks by Al or Cindy banning them or sending them to the penalty box for a month).

Take care,

Robert

 

[wheeler641]

wow, never knew about the dot thing, had to check mine:grin:

 

[olly]

robert.
i am going to see about the muscle biopsy.
the mnd diagnosed was given based on other things being ruled out,reflexes and other symptoms of clinical umn desease and then clinical symptoms of lmn involvement being present.
they would not give me definate diagnosed of pls or als,the umn symptoms were more severe in line with pls for some years but weakness,hypotonia,atrophy is more the problem now but not severe enough for als diagnosed............so hence mnd diagnosed.
apparently according to my neuro i am a autopsy case,very nice.............not!
the biopsy may not show anything but who knows.
i do know that my progression has been consistant that is starting in the legs and moving up to bulbar over some years with the umn ,then a couple of years ago lmn starting in left leg with foot/ankle atrophy a year ago.

the more you look into other neuro muscular desease like ibm and mitochondrial desease's there are so many shared symptoms.