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wheeler641

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Hi, my name is margaret and I have been lurking around the forums for about a week now reading posts and trying to figure out what is the matter with me. I am female, 59 years old with type 2 diabetes which right now is not controlled very well. About a year ago I started to get muscle cramps at night in my shins, calves and feet and than it went away for a year, now it is back with a vengeance, I have them almost every night, did have labs done and my potassium, magnesium and vitamin D was low, since that was diagnosed I rake all 3 supplements, they do not seem to be doing any good. Lately I also have been getting twitching in my abdominal muscles, not a lot and mostly at night, during the day I might be having them but I don't notice them as I am very active. I am on a slew of medications, I take glipizide for my diabetes 10mg twice a day, diovan for high blood pressure, various supplements and prednisone 10mg a day, I also take vicodin as needed. I was in a major car accident 6 years ago and my right hip was crushed, I have numerous nuts and bolts in that and my range of motion is somewhat limited in that leg. I do not have any weekness, I can move furniture around and lift just about anything, The only time I feel that I might fall flat on my face is when I get these muscle cramps in both my legs, it only happens at night. I can swallow ok and my speech seems fine. I came upon these site like so many others when I googled twitching.I laso have some nueropathy in my toes due to undiagnosed diabetes for a long period of time. I mentioned my concerns to my doctor but he did not seemed too concerned and kind of just blew me off. You guys seem like a great group of people from reading your posts I hope someone could give me some reasurrence as what this coould be or should I ask my doc for an emg or are my symptoms so far off it would be a waste of time and money
 

wheeler641

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I forgot to mention that a test for lyme about a year and my titers were high, I took and antibiotic for 2 months, just wondering how accurate tests for lyme disease is and should some kind of test be repeated, again my doc did not seem to concerned about this also. If someone could give me a good remedy to stop the leg cramps at night it would be appreciated, I really need to get a good nights sleep, thanks
 

Spacemonkehh

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There is another benign condition called Benign cramp fasciculation syndrome that is just like BFS, only with cramping now and then. However, because of your background story and diabetes.. i think it is extremely wise to have a MRI and a good conversation with a neurologists.. Not to scare you, but allot of diseases show up the older you get.

Take care, and we are here for the support or if you have more questions. ;)
 

wheeler641

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I asked my doc about seeing a nuerologist and he said it was not necessary. I beleive he thinks all my problems are called by my diabetes and nueropathy and he very well might be right. The cramping in my legs I have had for a few years now but it appears to be getting worse, the twitching is new. With als do you always have weakness? Also does drinking tonic water help with cramps, I think I read that it does somewhere on this forum, I just have to find something to get rid of the cramping so I could get some rest. Please do not think I am a hypochondraic, I hate going to the doctors and only go if I need a refill on my meds, thanks
 

wheeler641

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I also wanted to mention that my sed rate is through the roof, I belive it was 95 when last check, thus the prednisone. I have been tested for everything from RA to aids and all come back negative but I continue to have a high sed rate even with the prednisone. He mentioned that I probably have poly something rheumatica which like als is nothing that can be diagnosed from a blood test. Because my sed rate is so high I know I have some type of imflammation going on. Does als cause a high sed rate? Hope I am not bothering you guys too much I just have so many questions and even though I like my primary care doctor a lot it seems he is always in a hurry and I cannot get an answer from him, thanks
 

Al

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Hi wheeler. Welcome but sorry you're having problems. With the diabetes I'd be inclined to think the neuropathy thing with the legs. Do they burn at all? Most of us that use meds for cramps use Quinine and Baclofen. GNC stores has a supplement called Leg Cramps that might help if you wanted to go that route. It has Quinine in it.

AL.
 

wheeler641

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.no, i don't have any burning, they kind of feel numb and cold sometimes though and are kind of painfull when someone touches my feet. Also again about the sed rate, does anyone else have one, that seems the only thing that came back abnormal, that and the test for lyme, I have read that most tests for lyme are not that accurate, I took docycycline for two months for that and my primary care doctor said having a positive high titer for lyme does not indicate it is active now just that you were exposed to it in the past , is he right?, Again sorry for all these questions, I am just real confused about all my symptoms right now. I bought some tonic water and am drinking it now, it does not happen in the day only at night. I am not sure if the cramping wakes me up or I wake up and the cramping starts when I stretch my legs, it is located mostly on my shins I also got on the floor and tried some exercises, I lifted my legs while flat on my back and held them there for about 2 minutes, I also can lift almost anything using one hand so I guess I do not have any weakness, I am at a loss as to what this could be, maybe it is a nueropathy thing, thanks to eveyone for replying to my questions.
 

crystalkk

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wheeler,

I'm not a dr. but it does not sound like ALS at all. Your low potassium and magnisium could be causing the cramps. How long have you been on the supplements? I would definately get the lymes checked out again.
which could cause cramping, twitching, vitiamin deficiency, and inflammation. You might want to see someone that specializes in lyme.
 

sukilou

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Hi Wheeler,

I have a diagnosed of Probable ALS, and have had many blood tests, including sed rates. My neuro repeated the test again this year, and my sed rate was normal. The only abnormal result in my blood work was a Vit D insufficiency, and I have been on D supplements, along with calcium and magnesium for 4 mos. They have not made a difference with any of my symptoms of cramps, spasms, twitches, stiffness, and I'm now trying tonic water daily. I'm off to the ALS clinic on Monday and will ask about the Baclofen. Anyway, I just wanted to tell you about my normal sed rate.
 

Spacemonkehh

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Hi Wheeler,

I have a diagnosed of Probable ALS, and have had many blood tests, including sed rates. My neuro repeated the test again this year, and my sed rate was normal. The only abnormal result in my blood work was a Vit D insufficiency, and I have been on D supplements, along with calcium and magnesium for 4 mos. They have not made a difference with any of my symptoms of cramps, spasms, twitches, stiffness, and I'm now trying tonic water daily. I'm off to the ALS clinic on Monday and will ask about the Baclofen. Anyway, I just wanted to tell you about my normal sed rate.

Were your twitches and other symptoms widespread ( all over the body ) or just in the affected limb?
 

wheeler641

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thanks to all who responded to my queries. After reading posts on this forun for about a week Ifinally got the courage to ask a few questions and it appears that I most likely do not have als, but some sort of nueropathy, I go to see my doc in 2 weeks I will ask him for some type of muscle relaxant for the cramps. I guess the reason why I was so worried about als is that I am the support system for sooo many people right now and if I have some sort of devastating disease than who would I lean on. I am taking care of my husband who had a massive stroke about 2 years ago, I also have adopted 2 of my grandchildren at birth, they are now 13 and 14. I realize tomorrow is not promised to me, I just want another few years to finish raising my granchildren and the thought of having a terminal illness just terrifies me. I wonder if this did happen , who would take care of me. its nice to know there are forums out there with wonderful caring people who I could confide in and would support me if my worst fears were realized, thanks
 

sukilou

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Spacemonkehh

My symptoms are in both legs, feet, arms and hands. I have clinical weakness noted by my neuro in all limbs along with fasics, atrophy in right and left feet, left arm and left shoulder muscles. My EMG showed abnormalities in all those areas, including the paraspinal muscles. Recently, I have twitches in my lower lip and right jaw spasms, although my tongue EMG was clean. At this time, the UMN symptoms are the most troublesome as they are causing coordination and balance problems. I walk with the use of a walker and only with a cane if I have the arm of someone to help maintain my balance.
 

Spacemonkehh

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Spacemonkehh

My symptoms are in both legs, feet, arms and hands. I have clinical weakness noted by my neuro in all limbs along with fasics, atrophy in right and left feet, left arm and left shoulder muscles. My EMG showed abnormalities in all those areas, including the paraspinal muscles. Recently, I have twitches in my lower lip and right jaw spasms, although my tongue EMG was clean. At this time, the UMN symptoms are the most troublesome as they are causing coordination and balance problems. I walk with the use of a walker and only with a cane if I have the arm of someone to help maintain my balance.

How did ALS started for you? widespread twitching or weakness?
 

sukilou

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Spacemonkehh

Looking back over the last 2 yrs, the first thing I noticed was my stumbling and tripping. I thought I had balance problems, but did not know why. I started with a balance program through a physical therapist. When I didn't improve, I went to my GP, who then referred me to a neurologist. At that time, Aug 07, I was having trouble walking on uneven ground, could not stand on one foot, nor on my tiptoes, nor heel walk, nor keep my balance while tandem walking. My legs didn't feel weak to me and I didn't associate my lack of balance with any weakness. My neuro also didn't see any clinical weakness at that time, but wanted me to follow up in a year. He told me that my problems were muscular skeletal in nature and recommended that I lose some weight to make it easier for me to get around.

Well, I took him at his word, lost 40 lbs over the next 6 mos, and continued with my balance exercises. However, the falling increased, and I started noticing an increase in cramping and stiffness. I thought it was arthritis, and sometime about 9 mos ago, the twitching started. I still didn't think of it as anything serious. Also, my handwriting had changed and had become quite squiggly, but still legible. Again, I was not associating any of this with muscle weakness. Then in May, 08, I had a serious fall which resulted in a complex fracture of my wrist, requiring surgery. During my rehab for my wrist, my physical therapist recommended that I return soon to the neuro because my walking difficulties were progressing. My PT called me the "herky jerky" girl--my coordination was terrible.

I started again with my neuro Aug 08, who took one look at my movement problems, ordered MRIs of brain, cervical, thoracic and lumbar spine, more bloodwork, and finally a NVC and EMG. Up to the point of the EMG, he was thinking a neuropathy, or myelopathy, stenosis, maybe multifocal neuropathy and finally PLS because of the spasticity. By the time he ordered the EMG, my atrophy and muscle weakness were quite evident. He said that I definitely had a motor neuron disease and met the criteria for a diagnosed of Probable ALS and scheduled me for a second opinion at the ALS Clinic. That appt is this Monday, Nov 10.

So, the short answer to your question is that I presented with spasticity, stiffness and cramps. The twitches followed, with weakness and atrophy.
 

wheeler641

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Were your twitches and other symptoms widespread ( all over the body ) or just in the affected limb?
my twitches are mostly in my abdomen and I have twitching in one eye, I think that might be from wearing glasses and stareing at the computer screen for too long, I also started on prednisone about 2 months ago and it seems to correspond to the time I started taking the medication, it seems to be helping so I really do not want to stop taking it. I have no weakness at all, I am a little wobbly when I first wake up, but my right lhip was broke about 6 years ago and it take it longer than me to wake up:razz:
 
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