I have continued lactic acid burn in my muscles, even in my jaw when I talk. I have it everywhere. Just before I cry the burn is there. Typing this gives me burn in my arms and hands. I cannot feel when I have to urinate except when it starts to burn. I have high lactic acid, high pruviate acid and high Gad blood tests but no dignosis. Now my esphogus has shut down, with problems of digesting food for years, my lungs are shutting down and I am very tird expecially when I drive. the arm movement must make me very tired. I will set in my car for sometimes a half hour before i come into my home. Anyone out there have the same problems. I have other problems but this is constant.
Please ask around so I may at least get something i can explore.
thanks for all ideas
Skittles
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Help dignose me
- By skittles
- Posted October 25, 2009 at 2:58 pm · 16 replies
- In Getting a diagnosis
- Shared with the public
Explore topics in this discussion:
Falls Kidney stones Ataxia Osteopetrosis Muscle cramps Osteoporosis Urinary tract infections Dizziness Boniva Isaac's syndrome Forteo Fractures Diabetes Fosamax Weakness Pain ALS Osteomalacia
16 replies
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- By DgufoInspire
- Posted October 25, 2009 at 10:31 pm
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Skittles,
Did you mean you have elevated GAD antibodies? If so, then you have Stiff Person Syndrome. Check out the many threads on this site about SPS
Dr David ( with cramp fasciculation syndrome, related to Isaac's syndrome)
- By skittles
- Posted October 26, 2009 at 12:02 am
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Thank you for replying to my questions. My neurologist thougt I had stiff persons but then another neurologist said i did not. A Dr. Nutt at OHSU thought i was making it all up. I assure you, i am not making it up. Yes my GAD was ,238 i think. I get cramps and spasms real bad and my feet curl up. I have had numerous fractures.ie--legs,ribs,ankles, wrists, and many in my back with no explaination but osteo. I have taken 3 years of foxamax daily, two years of daily shots of forteo, shots of boniva every three months for 2 1/2 years and still break my bones very easy. I seems not to be able to eat a banana without getting spasms and if i eat too much calcium, i get severe cramps. i am a mess---lol
they say that elevated GAD is also relavent in numerous other ailments. I am frusterated. Does stiff persons have the burn in the muscles.? thanks again for your help.
- By DgufoInspire
- Posted October 29, 2009 at 4:29 pm
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Skittles,
Did your Emg show continuous motor unit activity simeaultaneously in opposing muscles like SPS patients do? Are you improved on Valium/diazepam like SPS patients? Do you have insulin dependent diabetes which can also give anti GAD antibodies like SPS patients have? Are these fracture from falls like SPS patients commonly have? Do you have muscle fasciculations/small painless muscle twitching under the skin like Isaac's syndrome patients have and SPS patients do not?
Dr David
- By skittles
- Posted October 29, 2009 at 5:33 pm
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Tank you for helping me. No diabetes. Did not have the 9 vertibral fractures numberous times because of falls. Barely turned or coughed or don't really know what happened. I have very severe muscle cramps on inner thighs, outside of ankles, feet turn in or toes get out of position and it feels like my heart or liver/lungs get caught between my ribs during these cramps or spasms. Was tested for Isaac's-negative. Emg was normal. Do not take any drugs unless I have to for movement. It does feel like my muscles are being twisted when I have spasms. My eyes burn just before i shed a tear. Jaws burn talking. I have had the muscle burn for about 35 years but getting worse now everywhere. Thank so much for helping me. My esphorus is not 100 % relaxed and canot digest food without digestive enzymes. My lungs are shutting down and now I have had e-coli and proteus mirabilis several times and I am a very healthy eater. Could my food be rotting inside of me because it does not digest very well. I sometimes have to get on a liquid diet. You are great to help me and I appreciate any and all ideas. Thank you
(: skittles
- By DgufoInspire
- Posted October 30, 2009 at 1:46 am
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Skittles
There could be a link between your osteoporosis and your muscle spasms. A disorder of chloride channels can cause muscle spasm ( myotonia) and cause calcium and phosphate loss out through the urine. Has your MD done a 24 hr urine collection for calcium and phosphate?. Was your EMG truly negative for repetitive action potentials ( myotonic runs) I also have another question to be sure you do not have Isaacs. Are you sure you do not have muscle fasciculations? These look like bag of worms movement under the skin. Of course, Isaacs does not give osteoporosis. It is a potassium channel disorder rather than a chloride channel disorder.
Dr David
- By skittles
- Posted October 30, 2009 at 2:34 am
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Dear Dr David,
I do know that if i eat a banana, i get cramps/spasms. Cant take potassium. I should not have osteoporosis
I have always been a very healthy eater. Vitamins and minerals all my adult life. I'm 61. I took 3 years of daily fosamax. 2 years of daily shots of forteo. 2 years of shots every 3 months of boniva. Still continued fractures. Have not had a fracture for 2 months. but did take reclasp in Jan /09. I at one time had high calcium in the urine. but if i take no calcium or 1200-1500 daily of citrate calcium it (now) always shows up to be 9.5. I know my doc would do a calcium in urine test if i ask. I do not believe this is osteoporosis. It is just not something I should have with my years of health foods and good eating habits. I will look up chloride channel disorder. I do not know for sure if the EMG wasnegative. I do have strange feeling under my skin sometimes but don't think to look at them, just let them feel weird. I will keep an eye on this. Sometimes I feel my body is not using any food for energy but storing everything for more truma to come. i will look at the emg test results. When there are so many problems, some docs feel overwhelmed. So am I. If i do not take calcium now (which I have tried lately) I have to take 100 3 times a day and work up to 1200 a day or I will get terrible cramps from
calcium as well. You are great to try to help. I will do my homework and get back to you.
Thanks (:
skittles
- By skittles
- Posted October 30, 2009 at 9:11 am
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any more ideas tho, Dr. David, would be appreciated.
(:
- By DgufoInspire
- Posted October 31, 2009 at 3:49 pm
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Skittles,
Ask your MD if you could have osteopetrosis rather than osteoporosis causing your bone fractures. In osteopetrosis from chloride channel CLCN7 malfunction, the bones become more dense but brittle. Another question to ask if you indeed have osteoporosis is whether a 24 hr urine phosphate ( not just calcium) was checked. There are ion channel disorders where the kidneys lose calcium and/or phosphate out the urine, causing osteoporosis.
Dr David
- By skittles
- Posted October 31, 2009 at 10:01 pm
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I will ask him to check the urine for phosphate and calcium. I will discuss the rest with him as well. Do you think the best doc for this is an endo who specializes in bones. Could this phosphate/ calcium loss create infections in kidneys. do you think this causes the excess muscle pain from what feels like lactic acid burn. Does the lactic acid, pruviate acid and antiGAD elevated levels create this osteopetrosis. When I read for awhle my eyes are then blurred and i can't see long distance. could this be the elevated blood levels and come from the osteopetrosis. It is like my eyes don't want to go back to normal--maybe they are just lazy lol Anyway, thank you for this info. I will get ahold of my doc (whick doc tho) on monday. I see my neurologist on monday. any questions for her. ??
(: k
- By DgufoInspire
- Posted October 31, 2009 at 10:19 pm
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Skittles
The most important thing to determine is whether or not you have myotonic runs on your EMG. If not, you can repeat the EMG both with after rest (looking for cold sensitive myotonia) or after muscle overexertion (looking for warm sensitive paramyotonia). The pyruvate or lactate indicate active muscles that are outstripping their aerobic capacity and needing anaerobic metabolism.
Then you need the results of a bone density test (osteopetrosis verusus osteoporosis). If you have osteoporosis you need to know the 24hr urine excretion of calcium and phosphate on a usual diet.
Keep looking for the fasciculations of possible Isaac's syndrome. The EMG can sometimes pick up Isaac's if there are muscle afterdischarges after a brief nerve stimulation at 5-10 Hz.
Interestingly, there is a Potassium aggravated Myotonia (PAM) that is a sodium channel disorder. You had said that Potassium makes you worse.
Dr David
- By skittles
- Posted November 1, 2009 at 12:10 pm
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Dear Dr. Dvid,
WOW, I have had more infor with your help than for the last 20 years. I am excited to find out about these things. I think I am going to eat several bananas to chect the feelings out. I will check on the bone density test that has dignosed severe osterporosis but that could be just what they are checking and not thinking out side of that dignosis. You are wonderful to spend this time helping me. I am finally encouraged. Even if i do not find the exact problem, I know you are on the right track. You are listening to me, that is rare. thank you so muc
(: K
- By DgufoInspire
- Posted November 1, 2009 at 9:22 pm
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Skittles,
High calcium leakage into the urine (?phosphate too I think) besides causing Osteoporosis, can cause kidney stones which can get infected with E Coli, Proteus Mirabilis, and other bacteria. Have you had a CTKUB to look for retained renal stones?
If you do another EMG, make sure you do the triggers before the test, like exertion, potassium, calcium, sleep deprivation etc.
The burning lacrimal paresthesias and the digestive dysfunction are dysfunction of the autonomic nervous system and the smooth muscle it controls. That is not seen in stiff person's syndrome but is seen in ion channel disorders.
Dr David
- By skittles
- Posted November 1, 2009 at 10:03 pm
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Dr David, I will ask my neurologist tomorrow about the autonomic nerveous stystem problem. She can send me to another neurlogist who might know more if she doesn't know. Se mainly does MS but continues to treat me because she thinks someday we will find out what is wrong. I feel sorry for her because she has seen me for 20 years with no real dignosis. I am excited to say the least. this is the first time I have heard a name like lacrimal paresthesias to describe the burn and autonomic nervous system. What name is a disease with iron channel disorders I have wondered about als but i continue to go on and on and on without that kind of breakdown. I read about 1 hour this evening and then everthing was basically double vision at long distances. Not close up tho. My eyes have been doubled for about 2 hours now at distance only. Could this be iron problems or oxygen problems. I hope I am not to overwhelming for you. My eyes have only had problems for about 6 months. i have no plaque in brain or spine for MS. Crazy huh? i really feel like I am shutting down everywhere. Thank you very much for helping me. i have waited for a long time for help and have a doc actually talk to me.
They are curious with all the test results abnormal but never find the problem. thanks again (: k
- By DgufoInspire
- Posted November 2, 2009 at 10:40 am
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Skittles,
Another thought I had today: hypophosphatemia from hyperphosphaturia (low body phosphate from leakage out the urine). It can cause muscle cramps, paresthesias, respiratory muscle weakness, gastrointestinal dysfunction, and osteomalacia with fractures. You would need a blood phosphate test but it may be normal and miss low body phosphate stores. The more important test is a 24 hr urine phosphate and creatinine( with serum phosphate and creatine) to calculate a tubular reabsorption of phosphate.
By the way, it's ion channel, not iron channel
Dr David
- By skittles
- Posted November 3, 2009 at 2:27 pm
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Dr. David,
I had lost the internet because of comcast problem and don't know why i got through now but will write while i can. I saw my neurologist and she is send me to a neuroopthomologist for eyes, urologist for infection and i am going to see if they will do some of the test you suggest. I am excited. I will also a neuromuscular again later, in Dec. This give me hope for something. Even if this is not right, it will rule out somethings and probable find the problem. Thanks again and I will keep you posted. We are very fortunate to have you on this site. You are greatly appreciated.
(: skittles
- By DgufoInspire
- Posted November 5, 2009 at 10:37 pm
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Skittles,
Another thought: Assuming your bone density test showed low bone density, your bone disease should really be labeled as osteomalacia, not osteoporosis, because of the multitude of fractures you have had and the clinical circumstances. Again, 24 hr urine calcium and phosphate ( and creatinine) excretion determination is crucial. Serum calcium, phosphate, creatinine and vitamin D should also be checked.
By the way, the double vision you get at distance with eye muscle overuse is called diplopia and is seen in some of the ion channel disorders.
So, in summary, you have myotonia-like muscle stiffness/spasms/cramps, muscle twitching that may be fasciculations or myokymia (bag of worms twitching under the skin), paresthesias (including a burning type with lacrimation) gastrointestinal autonomic dysfunction with sluggish digestion, shortness of breath that may be neuromuscular ( get a pulmonary function test), osteomalacia with multiple fractures, urinary tract infections that could be due to retained kidney stones( check a CTKUB) or from autonomic bladder dysfunction ( check a post void residual with a bladder ultrasound).
Did I miss anything?
Another question. Do you have ataxia ( persistent or episodic problem with balance or dizziness) which is seen in spinocerebellar ataxia and episodic ataxia which can be confused with Isaac's syndrome?
Dr David
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