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Severe Muscle Cramping
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Severe Muscle Cramping

Thank you for taking my question - I was in the middle of writing this before and everything disappeared, but my question was not on the forum, so I'll try again - I hope I did nothing wrong.  For years I have suffered with muscle cramps of the feet, toes, sometimes the arch, the front of my leg or the back of the knee (feels like the whole leg goes into a cramp and then the other leg does also).  I've tried quinine (I'm alergic (allergic) to it but it did help) and muscle relaxers (didn't help much) and no doctors seemed to be really concerned about it.  I have researched it extensively on this forum and the internet.  I don't appear to have other neurologic symptoms but I need help - this is very depressing when it happens, which is nightly or every few days.  The cramps appear after I get home from work, while relaxing or most commonly in the middle of the night.  The only relief I can find (cannot walk or stretch them out) is getting in the hottest water I can stand.  I'm afraid someday I'll burn myself.  I have recently been trying vitamins and magnesium which has offered some relief.  I tried Calcet (triple calcium for leg cramps) and they hit with a vengance again - both legs).  Either before or after the cramps I also experience little twitches all over my legs - I can feel them and see them, but they are not in one spot.  Do you think I'm deficient in certain vitamins and are there blood tests for this?  Could this just be a vitamin deficiency or something more serious that needs checking?  One thing I found is some people that are deficient in magnesium, calcium and potassium.  Please give me some suggestions or how I can convince a doctor that this is a serious problem with me.  Thank you so much.
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Dear Denise:

Sorry to hear about your muscle cramping.  Are there any triggers that you have noticed, such as extra muscle activity? weather changes?  drinking (hydration) patterns?  Sometimes we find that dehydrated states will induce cramping.  There are some muscle diseases that can cause muscle cramping (but the EMG should have ruled out most of these).  Exercise can trigger cramping.  Mitochondrial disease can induce cramping. Thyroid problems can also induce cramping. So, the spectrum is wide.  What did your neurologist suggest?

After eliminating the worrisome etiololgies, then the problems are one of medication.  There are alternatives to quinine, such as tegratol, dilantin etc.  Procainamide has also been shown to work.

I hope that I have not made things more confusing.  Sometimes it is hard to get people to listen to you.  However, medical care requires the information given both ways, patient to doctor and visa-versa.

Sincerely,

CCF Neuro MD
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Dear Dr. RPS,

Thanks so much for your quick reply.  The only thing I have noticed that may contribute to the cramps is the cold weather - but that's why I do my best to keep warm.  When I mentioned this to the neurologist (the cramps) he didn't seem to be that concerned and did not prescribe anything - I was going to him at the time for migraines.  I do not drink a lot of water, but I drink other things (not alcohol).  How would one know if they were dehydrated enough to cause cramping?  What is Mitochondrial disease?  In the past I have had thyroid tests done and the doctors always said one came back not right, but you need at least two to determine a thyroid problem.  Thanks again for the help.  From what I have read on here, you seem to be a very concerned and compassionate doctor.  The world needs more like you.
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Denise,

I don't know if this will help for your situation or not, but I too have very severe muscle cramps in feet & legs. This has been a life-long problem for me and also my daughter. We both have poor circulation (cold hands&feet, runs in family) and a high arch. The ligaments in my feet both on bottom and top can draw up so fiercely that my toes jerk and twist. It sometimes happens after I take off my shoes and lay down or when I try to apply any pressure to my arch.  The cramping can start with any part of my foot or leg and usually spreads to the rest of my leg.

The pain is horrible and the only thing that helps when in this situation is to sit in a tub of water as hot as I can endure.  If the problem you have is the same as mine, it may be a combination of circulation and muscles that require daily stretching. Stretching of not just the feet and leg muscles, but everything from the lower back down. I do stretches and I walk regularly. Since I started this regime, my cramping has improved tremendously.  Hope this helps.
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Dear Lynette,

Wow - that sounds exactly like what I have!  I thought I was the only person.  I have been told my circulation in my feet was fine by a podiatrist- a good pulse, even though I do have cold hands and feet most of the time.  He never said if I have a high arch or not but I may have.  And, yes, I too, get in a hot tub of water (sometimes at 3 a.m.) to get relief and I sit there crying in pain.  Have you ever been treated by a doctor for this and how?  I think the stretching sounds like a good idea and have thought of it, I just didn't do it, but will start.  Thank you so very much for taking the time to share with me.  I'm so sorry for your pain but yet glad someone understands.
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Could also be cramp-fasiculation syndrome.
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Denise,

I had surgery in 1983 to correct hammertoe. The ortheopedic surgeon told me at that time that he had seen this problem before (severe muscle cramping) and he felt it was due to my high arch and poor flexibility of the ligaments throughout my legs. He recommended stretching and walking for both the flexibility benefit and improved circulation.  I know exactly what you mean when you talk about the pain: prior to starting the exercise/stretch program, I found the pain level reminded me of childbirth.  I hope you will be able to solve your problem quickly.
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thanks for your comment.

CCF Neuro MD
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I had a tendon connection surgery on my left foot at the end of August.  In November I was sent to a specialty shoe store to order orthotics.  After 2 weeks of wearing them I started to have pain in my right leg.  My orthopedic surgeon says that the person who made the orthotic needs to re-adjust for the discrepancy in the length of my legs. (the right foot is shorter than the left)  So the orthotic guy added a 1/4 inch to the height of the orthotic.  That made it worse. I went to a neuro-surgeon who told me to remove the orthotics for 2 weeks and if the pain doesn't go away he would order an MRI.  I've been taking pain killers and are not happy with my present health.  I am very active. I walk 2-3 miles daily and attend jazzercise class 5 x's a week.  Do you have any suggestions?  It seems that specialists handle only a few inches of the body and won't deal with another part 5 inches away?
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I have similar cramps in my legs too. I felt like I was probably the only one in the world that sleeps in a southern state with an electric blanket ALL year round. It helps a little but doesn't take that deep ache away. Actually looing back, I did see an othropedic first thinking it was starting in my high arch, but I have always had high arches but haven't always had the cramping so bad. I went to a neuro (family's insistance) and my emg showed peripheral neuropathy: specifically an action potential of one sensory nerve was not obtainable and the distal  motory latency of another nerve was prolonged. What all that means is still in the diagnosing stage. I have negative MR of Brain, Spine, negative blood work for ANA, diabetes, B-12,Lymes, negative urine test for lead, mercury and arsenic. I am now waiting of results of a anti-Mag and GM1 antibody tests.It is really exhausting to go through all of these and even know you are happy they come out negative, you also realize someone needs to help with legs (and maybe arms starting)and the overall weakness. I was always extremely active and it is an effort for everything to be accomplished. If I stay stationery for any length of time, it is hard to move again. My mind doesn't want to make a quick connection to tell my legs what to do. I have never been a medication person as I have always been in great health. At 45 I haven't even had the flu (neither have our kids at age 15 and 19)Are you ever concerned that you may just wake up some morning and not be able to move???? I hope we all can find some answers. I wanted to know if my above EMG results is showing a nerve conduction block or not. One physician I quizzed said yes (he didn't have the actual test to look at though) and my neuro didn't seem to answer it. I have a family member with ALS and it is hard not to wonder if this is just in the early stages of a motor neuron disease. I would make sure they stay on top of you complaints and run the appropiate tests. All diseases have a beginning even though they may not test positive in those beginning stages.  Sorry I went on so much. At least my fingers can work, just clutzier.
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I have similar cramps in my legs too. I felt like I was probably the only one in the world that sleeps in a southern state with an electric blanket ALL year round. It helps a little but doesn't take that deep ache away. Actually looing back, I did see an othropedic first thinking it was starting in my high arch, but I have always had high arches but haven't always had the cramping so bad. I went to a neuro (family's insistance) and my emg showed peripheral neuropathy: specifically an action potential of one sensory nerve was not obtainable and the distal  motory latency of another nerve was prolonged. What all that means is still in the diagnosing stage. I have negative MR of Brain, Spine, negative blood work for ANA, diabetes, B-12,Lymes, negative urine test for lead, mercury and arsenic. I am now waiting of results of a anti-Mag and GM1 antibody tests.It is really exhausting to go through all of these and even know you are happy they come out negative, you also realize someone needs to help with legs (and maybe arms starting)and the overall weakness. I was always extremely active and it is an effort for everything to be accomplished. If I stay stationery for any length of time, it is hard to move again. My mind doesn't want to make a quick connection to tell my legs what to do. I have never been a medication person as I have always been in great health. At 45 I haven't even had the flu (neither have our kids at age 15 and 19)Are you ever concerned that you may just wake up some morning and not be able to move???? I hope we all can find some answers. I wanted to know if my above EMG results is showing a nerve conduction block or not. One physician I quizzed said yes (he didn't have the actual test to look at though) and my neuro didn't seem to answer it. I have a family member with ALS and it is hard not to wonder if this is just in the early stages of a motor neuron disease. I would make sure they stay on top of you complaints and run the appropiate tests. All diseases have a beginning even though they may not test positive in those beginning stages.  Sorry I went on so much. At least my fingers can work, just clutzier.
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Dear Denise,
Do your toes turn blue under the nails?  Raynaud's is triggered by the cold and causes terrible pain from muscle cramping.  It can affect your hands, too.  My older sister has it the worse and she gets nitroglycerin cream from the dr., this helps the circulation and that stops the pain.
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Hi Jan,

I have never noticed my toes turning blue or fingernails, but then again, in the middle of the night I'm in such pain that I just turn on the hot water and get in it.  My hands and feet are cold much of the time but not always.  But thanks for the suggestion - I really appreciate it.
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Not a night goes by that I sleep through because of leg cramps. I don't think that even the dr.s understand the pain these cause. These are no ordinary cramps that most people get.. A sleep study showed restless leg syndromeand muscle relaxers help some.
I have also had a bone marrow transplant so they are not sure how that works into the picture either. I will have to try the hot bath because what usually helps me is the opposite, I ice the area, warm bath sounds nicer. Also have found that wearing warm loose socks at night in bed helps tremendously. In the past three months I have started having severe burning pain dowm the side of my right thigh. I also had herpes zoster on the back of the same leg years ago. Any thoghts from anyone on this?
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hey,

I read the posts about muscle cramping.  Although, I don't have cramping, I
do have muscle spasms all over my body.  Sometimes they are only minor little
twitches, but other times my entire body jerks.  In extreme cases, my whole body
jerks continuously for 10 or 15 minutes straight.  It looks like I'm having a seizure,
only I am fully awake.  Along with these spasms, I have had a bad headache.  They both
started at approximately the same time (the headache may have started a day earlier).  I
also had a low-grade temp for six days when all this started.  My fever is gone,
but I am still having muscle spasms and headaches...sometimes violent spasms, and I don't
know what's going on.  I als struggle with other chronic illnesses including gastroparesis
(paralyzed stomach)and prolonged QT (heart complication).  I have been dealing with these
for many years, and my doctors don't think the spasms are related.  Because I am on
nutritional support, my potassium and magnesium and all other lytes are intact.
Occasionally I have dizziness, but I have that often because of my heart.  I went to the
doc and he did a quick neurological exam, and told me he doesn't know what it could be and
to come back in two weeks if I'm still having them and he will run more extensive tests.  These
have been going on for two weeks and my body sometimes gets physically exhauisted from all the
jerking.  I am 22 years old and trying to get through college.  I am
supposed to graduate in may...if my health problems don't keep me from it. I would appreciate
any opinions anyone can give me.  Please e-mail me at ***@****.  Thanks.
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Dear Carissa:

I would check with your neurologist.  Since your lab results are normal, the TSH and T4 were normal?  B12 level normal?  I am also assuming that you express no muscle weakness?  If those are normal then you might have a condition called benign fasciculations.  Approximately 30% are post viral illness related but the rest we are uncertain about the etiology.  They do not cause physical damage and can persist for days to weeks to months.  They usually resolve on their own.  There isn't a medication that really helps.  Fatigue, anxiety make the fasciculations or muscle twitches worse.  But, I would just have a neurologist take a look.

Sincerely,

CCF Neuro MD
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Any neuro comments on my 2/8/00 post. Additional info on autoantibody testing. My anti-MAG was ok, but the asialoGM1 IgM test was positive. Since we already know that I have sensory motor neuropathy, will this additional information help to better define the cause. Does this r/o ALS now or keep it in? Does this mean specifically a MMN of a different variant? Again I still don't know if unobtainable SNAP and prolonged distal latencies in the nerves is a sign of conduction block. Does this all mean the PN is caused more from axonal damage than demyelination? Any suggestions on what to expect at my next neuro visit, questions I should ask, and is this something you would suggest getting a second opinion about? Hope you can respond to this post before March. Thanks
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I'am a 53 yr. old female whose MRI showed "white matter disease". I have a history of cramping in the lower extremities, deep fasciulations over all my body, neurogenic bladder, depression, fatigue, and intense "patches of itching in the lower extremities followed by muscle soreness, episodes of L'hermitte's syndrome and increasing number of headaches. The EMG's were negative as well as a spinal tap.The "spots" on the MRI 9 months ago were less than the MRI I had last week.( the radiologist said they were fluctuating in nature) Blood test results for CBC, Sed rate, ANA, B12, are due back in a week. Last month I was hospitalized  through the ER with shortness of breath and a dull throbbing pain in the heart that at times felt like it was moving into the arm. My EKG and other blood work and a subsequent treadmill were all normal.  Last year I was told it was probable MS-now it's been suggested it might be vasculitis,arteriosclerosis or migraine pattern(?) Yesterday the itching was so intense it was actually painful and muscle soreness in the afflicted foot set in today. There is no rash but many times a patch of petichia or bruising remains. Is all this related to one condition? This has been going on for some time and I need some answers soon because I have too many days of feeling generally unwell lately. Any advice would be very much appreciated. Thanks so much for this service.
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I'am a 53 yr. old female whose MRI showed "white matter disease". I have a history of cramping in the lower extremities, deep fasciulations over all my body, neurogenic bladder, depression, fatigue, and intense "patches of itching in the lower extremities followed by muscle soreness, episodes of L'hermitte's syndrome and increasing number of headaches. The EMG's were negative as well as a spinal tap.The "spots" on the MRI 9 months ago were less than the MRI I had last week.( the radiologist said they were fluctuating in nature) Blood test results for CBC, Sed rate, ANA, B12, are due back in a week. Last month I was hospitalized  through the ER with shortness of breath and a dull throbbing pain in the heart that at times felt like it was moving into the arm. My EKG and other blood work and a subsequent treadmill were all normal.  Last year I was told it was probable MS-now it's been suggested it might be vasculitis,arteriosclerosis or migraine pattern(?) Yesterday the itching was so intense it was actually painful and muscle soreness in the afflicted foot set in today. There is no rash but many times a patch of petichia or bruising remains. Is all this related to one condition? This has been going on for some time and I need some answers soon because I have too many days of feeling generally unwell lately. Any advice would be very much appreciated. Thanks so much for this service.
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Dear Cheryl:

I would agree with the vasculitis workup but one other thing to consider is a mitochondrial disease called MELAS (mitochondrial encephalopathy, lactic acidosis, and stroke-like syndrome).  It can also present just as you describe.

Sincerely,

CCF Neuro MD
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I am a 24-year-old who at 8 years old went to a convention at a world renowned hospital where 50 doctors from around the world came to try and make a diagnosis.  I had brown spots all over my body.  They were not scaly, hard, or raised.  They were just discolorations.  The hair on these "patches" grew thicker and darker.  A few drs thought scleroderma.  A few just said they had no idea, it was some type of Connective Tissue Disorder.  Then around 12 years old my hands and feet started cramping.  They lock in strange positions and this is extremely painful.  It feels like a charlie horse but worse.  The only thing I can do is try to "unlock" them by forcing the muscle the other way when possible.  Then at 15 I was diagnosed with absence seizures (I did have febrile seizures as an infant and was on Phenobarbatol until age 9).  At 18 I started getting treated for migraines.  All the while no drs were sure what was wrong with my muscles.  About 3 years ago I had my son and after he was born my symptoms got a lot worse.  I was in agony.  I started seeing specialist after specialist.  I am being treated by two neurologists.  One is about an hour away and treats me for my muscles, the other is around my home and treats me for my seizures and migraines.  The muscle specialist recently took a very deep muscle biopsy and was stumped.  He had to send it out to another specialist who specializes in rare muscle disorders.  I have tried therapy, quanine, and I take Depakote for the seizures.  The locking and triggering is getting severe.  It is now in my ankles, to the point that my ankles constantly cramp and I have fallen several times, it is in my back and it is starting in my legs.  Only since I have had my son has it really began to worsen.  Do you have any ideas.  I am stumped and so are all my doctors.  Obviously I have been tested for everything under the sun (thyroid, fibromyalgia, lupus, lyme's, etc....) I have had 3 EMG's (one was over two hours long - very extensive work-up) and I get MRI's at least once a year if not twice.  Please help.  Any thoughts would be greatly appreciated.
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Dear Christine:

I am not sure that I can help you.  Afterall, world famous doctors have been stumped.  Muscle cramps can be from many things, and likely most have been ruled out in your case.  What did the EMG show?  Was there any thought to eosinophil disease, or myokymia?  Sorry, I can't help.

CCF Neuro MD
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Hi,
This is my first time to look in on a site like this. I'm very impressed with all the medical staff that take time to read and answer the email!

I'm having some symptoms that I'm wondering if I should have checked out or if they are even related to each other. I'm a 39 yr old female in good health, I've recently lost 65lbs and still have 30 to go. I have a quite severe case of tenitus (with some hearing loss) for the last 10 yrs. I had a full exam in '89 and was told it would probably go away if I'd lose weight (hasn't helped).

The new problem is night time leg cramps, creeping sensations in lower legs, spasms and tics. I also have tender spots all over my legs that seem to be just under the skin. My husband and I can actually feel little knots or grainy like
areas where it feels tender. The other night I had a charlie horse so bad my big toe stuck up and wouldn't go down for 15 minutes!I'm a fifth grade teacher with 32 students and I don't know if these symptoms are from stress or if I should see a doctor. In case the diet (Atkins) makes you think I might be having a vitamin deficiency, I assure you I take loads of vitamins including calcium, magnesium, potassium and others suggested for cramping.

THANKS SO MUCH EVEN FOR READING THIS!!! Deb
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still wondering at significance of a low titre GM1 antibody associated with sensory motor peripheral neuropathy and extreme tiredness, muscle cramping etc.... can anything be done to improve symptoms without a more specific diagnosis???is this how some of the mmn and als begin, or is there enough info on the beginning stages of any of these diseases that seem to be so non specific for testing....just wait and see? the best offer???
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Dear TLee:

I am not sure of the significance.  However, GM1 antibodies do not have any relationship to ALS.  Have you been tested for GM1 gangliosidosis?  Most likely, the relationship with having a low titer of antibody is going to be non-specific.  What did your neurologist tell you?

CCF Neuro MD
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Thanks for responding to some of my questions. My titre was part of a ganglioside antibody panel and MAG antibody testing. The asialoGM1 IgM was the test that showed positive for a low titre. My neuro suggests a repeat of that test and another nerve conduction/ EMG. First one was in January. He will check to see if the titre test is a normal variation or has increased since Feb and the nerve conduction test would see if anything has become more progressive. I know my symptoms have but I am not sure at what point or how long it takes to show more changes. I showed prolonged distal latency of the peroneal and the sural nerve action potential was not obtainable at all. I still haven't gotten an answer if that is a sign of a conduction block. I have been told yes and no, which isn't a help. He wants me to consider being retested in a month/ and/or consider going to Gainseville, FL to see a neuro specialist there. I know a second opinion can be a great peace of mind, but if there is not enough known scientific testing to be more specific I am not sure that I will be given any more information. My neuro told me that if my titre was higher he would consider plasma exchange/globulin therapy which of course I don't want and obviously at this point don't need.
I have read articles on the PubMed Query where anti-GM1 antibodies were frequent in ALS patients with prominent lower motor neuron signs. I understand the chain types may be different or more specific but there were numerous articles that showed a link. Most were published in previous Neurology journals.
Although I do think of ALS because of my uncle, I really don't think that is what is going on unless there just isn't enough documentation on early stages. Actually if it was a matching test with symptoms and diseases, I think my lower half fits PD but my upper half doesn't. No tremor, etc...normal MRI, etc....
It is all just very frustrating because I feel my healthy body getting worse and how can you help it if you don't know what's causing the problem. I am losing my ability to keep my mind over the matter so I can function normally because I am becoming so much more uncomfortable. Even tylenol pm won't keep me asleep when my legs have had too much and I hate any kind of medication as it is. I have only had antibiotics for C-sections, otherwise I have never been on any meds.
We can only wish the future can bring us accurate testing for some of the diseases that reach us and we wont have to spend time online trying to diagnose ourselves so we can improve our lifestyle.....   thanks
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Dear TLee:

As you are well aware, there are NO sensory symptoms with ALS.  As far as the anti-GM1 antibody, there is no correlation of its presence and ALS.  It is found in some patients but it is not causal to the disease, nor is it found in all ALS patients.  If this were not true and this antibody was diagnostic, we all would be getting these tests on our patients. There are ciruculating anti-GM1 antibodies in GBS, so are ALS and BGS related, of course not.  I hope that with retesting that your anti-GM1 IgG is not where to be found.

Sincerely,


CCF Neuro MD
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I agree. There are no tests that people with a disease will test 100% for. Finding a common denominator for a disease 100% of the time is why there are so many neurological diseases that cannot be pinponted in early stages....the frustrating part for patients an no doubt their doctors, too. I hope the studies on EAAT2 will some day be helpful for testing for ALS. Again, I really don't think I am even in the beginning stages when I am thinking logically. Your mind just gets the best of you when you are unable to function and try to surpress the discomfort of your symptoms. Some days you even think that the whole boat is being missed and the problems are caused by something very basic, because it is so hard to understand in this day of scientific technology why there aren't better answers without prolonged months of waiting.
On the ALS...yes I believe it is predominately a motor neuron disease but studies and literature, again, have shown ALS patients, a percent of them, to have some sensory symptoms. I guess I have just seen too many patients not diagnosed early with diseases because they did not fall in the "majority" of the way a particular disease runs its course. Sometimes that oddball or small percent is out there, and people do fall in it. Again what does ever have the 100% to it. I do think it is good that there is a strict criteria for the diagnoses of ALS but I also hope that the medical science will allow us to be flexible as we learn more down the road. We don't need misdiagnosis or premature ones, just accurate ones that can be made  in a reasonable length of time.
Once again, I appreciate your time in responding. You are no doubt one of the special ones who are more than just a specialist. By the way, do you think absence of SNAP is a conduction block???.....curious....thanks again
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Dear TLee:

In the hundreds ALS patients that have come through are clinic we have not any evidence of a sensory problem related to ALS. I would be very hesitent to believe otherwise.  

CCF Neuro MD
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Will try to get you specific literature references. One particular that I recall was a book entirely about ALS that our library had. I wrote down the info on the author but don't have it with me at present. Other articles of reference were from the internet. It is a small % but has been demonstrated enough times to comment on.
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Dear TLee:

We just finished a chapter on ALS to be published in the Neurology Clinics.

CCF Neuro MD
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Have wanted to reply sooner but have not been able to get the book I mentioned from the libary to share info on sensory symptoms seen in some ALS patients but you may be familiar with the authors Dr. Hiroshi Mitsumoto and Dr. Forbes H. Norris, Jr. who wrote the ALS book. It really is an excellent resource and anyone dealing with ALS patients and families should keep a copy for them. Am interested in what you are writing. Will it become available somewhere??? Hope you are still responding to this column. Thanks
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Does anyone know any info. on Thoracic spinal stenosis T9-L1.
I am interested in what your symptons are and what type of
treatment you use.  I have pain on left side from T6 to L-1
and also radiates over my lower ribs in the front and also pain
in the soft tissue on the side or a better description might
be the "love handle" area.
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Some medicines for lowering cholesterol will cause severe cramping.  Check with your doctor.
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A related discussion, Muscle cramps in feet and hands was started.
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