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bulbar ALS Concern. I stared with swallowing issue 10 yrs ago?
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bulbar ALS Concern. I stared with swallowing issue 10 yrs ago?

I have been concerned about ALS for about 19 months now. My sysmptoms started with twitching in the left head area & face with a little slurred speach in 9/2009.  Then fasiculation from head to toe & I mean eye lids to back, trunk, thighs, forearms, calves, ankles. I have had trouble swallowing for about 10 yrs. A swallow test in 9/10 showed multiplie second swallows needed with spiliage no aspiration. (4) EMG were clean last on 1/27/11 but my biggest concern is since my last visit to my neuro my speach has gotten worse, my teeth & tongue get in the way of the process of speaking (making my teeth knock togehter which become sore at days end). I have trouble chewing/manipulating certain foods & liquids. Food is lingering in my back throat area. I have found out I have has of 1/2011 that I have obstructive sleep apnea(saw ENT) nothing seen on scope physically obstructing airway. My forearms are realy tender & sore to the touch. Handwritting is a challenge of lately. Intermittent sounds in the back of my head. All my test from 2009/2010 being MRI, MRA, CT of head show nothing sugnificant. I had a one gamma band in my CFS fluid. 100's of blood work done but nothing systemic showing. I'm convinced this is a grey slow onset of bulbar ALS. All the symtoms (symptoms) point to it, I just think my dr's have become frustrated with me because I have been so adimate about ALS fo alomst 2 yrs & I pass all my physical test & my EMG & NVC are clean. I dont think I would now as im noticing some weaknes/stiffness with wrist & forearm pain with use. Put the puzzle together for me or just what do I do or ask my neuro to do. I need help or it insanity for me. What else can it be? What do you think, I'm i going in the right direction here, A SLOW ONSET BULBAR ALS that started 10 yrs ago with my swallowing issues. Today93/22/11) I started dyheving after a long converstion. Can't hold anything down. My whole body hurts(weak). Is this a sign of bulbar? Starvation/malnutrition/deyhdration? Sebastiano
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Avatar_dr_m_tn
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

You have a complicated constellation of symptoms. I am not sure if I will be able to help any, but I can provide some broad information.

In general, when fasciculations (or muscle twitches) occur in the setting of associated symptoms such as progressive loss of sensation, tingling or numbness, weakness, trouble swallowing and other symptoms, the cause may be due to a peripheral nervous system problem. In general the symptoms would not be episodic and triggered by certain things but would be more constant/frequent without consistent triggers. The location of the problem could be the anterior horn cells, the area where the nerves that supply motor innervation to our body come from. These are the cells that give off the nerves that allow us to voluntarily contract our muscles. The diseases that might affect the anterior horn cells include ALS (also called Lou Gherig's disease), a condition called spinal muscular atrophy, polio-like viruses, west nile virus, and other infections.

Many times muscles twitches are benign meaning that they are of no consequence and are not resulting from a serious cause. In such cases, the twitches may be related to anxiety/stress, caffeine, and often occur after recent strenuous activity or muscle over-use. It is important in such cases to reduce stress/anxiety levels and to reduce caffeine intake. Tremors of the hands can be physiological that is exacerbated by stress/anxiety and caffeine.

Often these symptoms may reflect emotional/psychiatric problems related to stress (what is called somatization disorder). The latter is a true medical condition whereby instead of a patient experiencing depression or anxiety, they experience physical symptoms, and once the stress is addressed, the symptoms resolve. Fibromyalagia is another medical condition that leads to whole body pains, and is best treated with medications such as lyrica and neurontin, exercise, and physical therapy.

If you are having only bulbar symptoms, I would recommend that you also have a thorough neuromuscular junction evaluation looking for myasthenia gravis.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

3 Comments
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Avatar_m_tn
What do you think of this being a Metabolic Alkalosis issue if not ALS being I'm having swallowing issues for 10 yrs & counting (solids & liquids)? The symptoms fit me to the tee for Metabolic Alkalosis. Does Metabolic Alkalosis in the severe case cause trouble with motor movement & arm/hand/leg/muscle weakness plus speech problems? Any input would be great. After I over use my hands & speech or leg mucles it becomes harder for me to speak, wright or walk. I do have labored breathig & obsrutive sleep apnea. What test could indicate Metabolic Alkalosis or resparitory alkalosis? I just can't link a speech issue with my other symptoms to bulbar ALS. But the neuro's say u have all the symptom of ALS but we don't see the signs ON TEST or physical to DX u, so you do not have ALS. Thanks in advance, Sebastian!
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Avatar_m_tn
******What I ment to wright was I can't link a speech issue with all my other symptoms to ALS or the bulbar form but a evaluation by to neuro's say no signs on examination & previous EMG but you are right u do have all the hallmark symptoms WE JUST CAN'T detect them******* If it wasn't for the speech issue(which is just frightning) I would be ok with the DR evaluation but I've been chocking on certain pills with saliva getiing trapped in my throat UNTIL the pill finds its way down. A barium swallow showed a mild apperaing tappering of the upper third of the esophagus & irregularity of the mucosa confirmed by a tablet which did not pass through the region of the thoracic inlet for the remander of the exam. Would that finding to u mean anything & is this seen in patients with bulbar ALS(The mucosa thing)? THANKS ONCE AGAIN, SCARED TO DEATH, SEBBY
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