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Moonmark

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Hello,

Back again. I am wondering if people here experienced ankle weakness and how that manifested. Those who've read my posts may (or may not) recall I have a 10 month or more history (not sure exactly when things started, but recall some weird muscle spams in my chest area exactly one year ago) of muscle cramps, pain, off and on twitching, off and on saliva, muscle weakness, and fatigue). Negative EMG in June of both legs and one arm. Two neuros (both ALS specialists at well-regarded hospitals) not sure what is going on, said unlikely to be ALS, but neither would definitively rule out a neuro condition. follow ups every 6 months, or sooner, if symptoms progress dramatically.

anyway, the worst part of my body is my right hand, arm, elbow, shoulder. It has slowly crept up the arm, starting with the hand, still fully functional, but pain, and weakness on that side, with activity. trouble lifting things overhead, grip while writing is slightly diminished, drop things a lot, have trouble with ziplocs and buttons and such, but can still do them (sometimes not so easily) and can still write and type, no problem. there is sometimes twitching in my arm after I use it for a while. for instance, I was doing play-do with my daughter the other day for some time and that resulted in an outbreak of muscle twitching in my upper arm. my right arm is dominant, but the muscles in my arm and shoulder are somewhat smaller than the left side, although I pass the tests for clinical weakness at neuro office with no problems. and if it is atrophy, it is not significant enough to warrant alarm by anyone. Reflexes on the right side are greater than the left at last exam in Dec. I am also having a lot of charlie horse-like muscle spasms in my neck, when I sneeze or move too abruptly or something.

I have noticed in recent months that my feet seem to be turning inward somewhat at the ankle and my arches are becoming flatter. I am starting to have pain around the outsides of the ankle, particularly on the right side. Today, after dropping my almost 3 year old daughter off for her one day of childcare, my right ankle gave out as I was walking down the steps and now it seems slightly sprained. I do not want to go to the doctor again. The right foot is bonier than the left one and many of my shoes are uncomfortable. I have noticed this winter that I seem to do better in boots that have more support around the ankle than regular shoes.

at the last neuro visit with the PA, they said they would probably repeat tests such as the EMG and MRI late this spring or summer if things do not improve. Frankly, I am sick of ALS lurking in the back of my mind if it need not be. Do you think by now that the EMG would show the characteristics of ALS or a related disease if that is what is slowly unfolding in my body?

I have made the rounds to the GP, the rheumatologist, the orthopedist and the only doctors that want to see me again are the neuros. Still, they are not too forthcoming with whatever it is may be going on, except to say that some neurological conditions take time to develop and diagnose. Now I am off to see a chiropractor, to see if that helps any.

do you think I should press for another EMG now-- it's been seven months since the first one. I would assume if that is normal, I can move on mentally to some other ailment (lucky for you!). Do you have any suggestions for how you would approach the neuro office? The neuro basically said I should come back if I lose the ability to use a finger, or a foot, or a leg, or whatever.

any advice would be appreciated.

thanks again,

Sandra
 
SandraD,

With all due respect, ALS should have gone off your radar last summer when your EMG tests were normal. Even now, the slight progression of symptoms that you have shown is nothing like what you would have seen if you had ALS.

You are the only one who can free yourself from this obsession with ALS. Just stop comparing every little quirk you feel with the ALS symptom chart you have bookmarked in your browser. Your neuro cleared you again last month. Why are you so reluctant to accept no, you don't have ALS for an answer?
 
With the symptoms you have described if it was ALS the neuros would have been able to diagnose you. Since all your tests have come back negative you should put ALS out of your mind. You have something else going on.
 
Hi Joel and trfogey--

thanks for your input. I guess the only reason I am still even thinking about ALS is that the neuros want me to keep coming back every 3-6 months and because neither would say definitively that I do not have a neurological condition. The PA at the last visit mentioned atypical MS, but I do not have any sensory symptoms such as numbness or tingling. And the fact that things are progressing, albeit slowly, has kept me worrying about this. I am aware that I could (and probably do) have some other neuro condition, other than ALS, though, or even something not neurological. I guess it does not come across in my posts that I am aware there are other possibilities.

I saw a chiropractor today and she said I have some issues with my spine, shoulder, and arm that may be helped with chiro, so I will try that. She also said I have pronation of the ankles, particularly on the right side and would recommend shoe orthotics, so I will go see a podiatrist next. she noted that I have a spinal hump in the upper back, between the shoulder blades, and my head is jutting forward at an abnormal angle and I have sway back in my lower back. I have been aware of postural changes unfolding since this began, but I did not know exactly what they were, just that things are physically off-kilter. She said my right arm is noticeably weaker than the left and was surprised the dr. did not describe this as clinical weakness. Her tests for clinical weakness were a bit more involved than the neuro's. She also said my range of motion is somewhat limited in the right arm and shoulder.

I am aware that to some, especially people with advanced ALS, these may seem like minor quirks, but to me they are worrisome and did not exist before all this stuff started. For what it's worth I do not have any bookmark of ALS symptoms.

I do appreciate you encouraging me to to think of some other options other than ALS. I guess it's the damn twitching that comes and goes that sets my mind in that direction, on top of everything else.

I'm sorry if it seems insulting or disrespectful in some way for me to keep posting here, or airing my fears about ALS.

Wishing you all well--

Sandra
 
OH do I understand!
I have the same spinal issues that you have. What we have in the upper back b/w shoulder blades is dowagers(sp) hump, it is related to arthritis of neck. I have a lot of spinal issues.
I also was told no clinical weakness by neuro but when I went to physical therapy, my PT told me that I was abnormally weak with out a known cause so she did not know where or what to work on. I felt without a diagnosed that I could injure myself by continuing so didnt. The PT exam was WAY more thorough then my nuero and would have detected early weakness. I havent been evaluated in a year by neuro but I must have clinical weakness by now. I have a hard time holding bottle for baby and tickling my kids and putting any pressure on my hands or wrists.
My ankles are very weak and thinned out as well. I cant even wear my own socks anymore, I wear my 8 yr olds socks! I also feel better in boots and I think I may start with ankle brace.My feet and hands hurt so bad at night(and day) and they feel tickly and tight and weak.

I put als out of my mind, or tried last feb after clean emg and clinicals (albeit brisk reflexes, jaw jerk, and tremor) but I continue to get worse and new twitching and aching and pain and thinning of muscles continue, very flaccid. If I use my muscles too much, they will twitch as well. Twitching is the LEAST of my concerns, but bothers me if its in a new weak place like my sides.

I know you are not ALS obsessed, as I am not either but there are many a folk who have had emgs early on but then went on to have als and a dirty one. I know that is not the norm but it does happen and I think that is what we are fearful of. ANd having no one that can tell us what it would be or could be is more stressful and leaves a nagging a doubt in our minds, as als is normally by exclusion.

The only advice is to take one day at a time and live in the moment and feel blessed that you dont have a diagnosed. And no, I think it is too soon to have another emg. IT was for me. I had 3 in one year and they were all fine, zero problems. I will surely let you know how this next one goes for me. After 2+ yrs and progressing sx, it will be interesting.

bless you!

april
 
April,
I am so sorry to hear you are still not feeling well. Gosh I hate that. I am so hoping you will get some answers. I sure hope they will finally find something treatable and conclusive. I hate to see so many suffering for such a long time with NO answers. I can tell you that many of us have had a tough time with answers, and it is just plain sad. It is so past time that people care about MND's and put money to find a tests and a cure. I am thinking about you, and sending you positive thoughts. People like you are such important members of the forum.
 
April, you know I'm pullin' for ya. I'm pullin' for all of us - diagnosed and un'diagnoseded.

Most of you can't tell from my futile attempt at wit most of the time, but I think and pray for many on here. Ya'll help keep me encouraged, and sane, at the same time.
 
Thank you Hoping and ktmj! I did not mean to hijack this thread, only that I can relate to Sandra. It is hard, and there are MANY of us un diagnosed (many dont post) that have REAL issues and NO answers and are continuing to get worse, just because someone stops posting does not mean that they are better! I speak with a lot of them. It may not be MND or may be one day, or some other muscle disease but when you can not do the things you want to do or use to do or take care of your family the way you want, it is real enough!

I will post an update on my Als clinic appt on Feb 19th. I didn't go for a year because I wanted to live in denial that anything was really wrong and took the approach that no diagnosed means that I am good, my husband however is the one pushing me to go. So, I will for him.

I am not complaining, I feel blessed in comparison to many pals or un diagnosed on the forum as I can still do most things that I want and only half of what I cant. I mean who really needs to clean the house? Housekeeper anyone? Lets get my husband to agree! cleaning my floors makes my calf's stiff! Look like a penguin.

God bless!


April
 
Well if it looks like a penguin, and quacks like a penguin, you must be a ...

Nevermind.:grin:
 
Jeff,

I have been called worse! Plus, we love penguins over here, as in the Madagascar movie. My husband Had the voice down, it is so funny.
Plus, with the no working out I am going to start looking like a penguin....
 
Hi April- no worries about the hijack. sometimes it just happens. thanks for your supportive post. dowager's hump? that sounds attractive! I have to wrap my brain around getting adjusted by the chiro. a little fearful of that, I guess. But I hope it helps. today, my upper arm was throbbing and I cannot connect it to any activity.

I have to wait til March to see the podiatrist for orthotics. I just bought cheap shoe inserts for now, to see if it helps with my ankle, especially the right one.

I can relate to the penguin walk. My calves feel like that after I wake up in the morning, especially the left one. I have to shuffle like a crab to the bathroom and stretch out in the shower before they feel somewhat normal. I think I mentioned the neuro said I have increased muscle tone in my calves, but as far as I know, nowhere else-- not sure what that points to.

Good luck on your next visit with the neuro. Feb. 19 is my daughter's third b-day!

Take care--

Sandra
 
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