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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


[QUOTE=Stephanie6603]Hello everyone. Posting on these boards is usually not me, but when I read and see the compassion that people have, I thought it was worth a shot. Iím in such desperate need of help I donít know what to do. Iím a 28-year-old female, healthy, just lost 90 lbs in 13 months. Over the last year, I went to the gym 3-4 times a week, weight trained and did aerobics, planned a wedding and worked full time plus waitressed on Saturdays. I was married in June and came home from my honeymoon on June 22nd. The last week of my honeymoon I began having stomach pains and loose stools. At first I thought a bug since I was on a Caribbean Island, but it was relentless so I attributed it to my irritable bowel that I was diagnosed with freshman year of college (1993). Coincidently, I received my third shot of Hep B vaccination on June 24th. Over the next few weeks, I did feel blue that the wedding was over and back to reality. I started to develop urinary frequency and a painful bladder and burning after urination. My Gynecologist said everything on that end was fine and referred me to a urologist. No signs of an infection! After seeing the urologist, she suspects pelvic floor tensed muscles or something called Interstitial Cystitis (IC). After reading information about IC I was obviously upset to find out that the outcome is not positive I couldnít imagine why my bladder felt so bad. Anyway, as time passed more and more ďsymptomsĒ were coming out. Three months later I can tell you that my body hurts in so many places. My shoulders ache, mid to upper back have severe pains, deep pain in chest, stomach pains, legs feel weak and shaky like i can't support myself, feel like my walk is off, even pain in my rectum. Plus sharp, shooting pains ALL over. Sometimes I get this feeling that comes over me and I donít know how to describe it but as my whole being feels so sick and I feel like my legs wonít walk, (but they always do). I have small muscle twitches or feelings of like bubbles all over like my calves, trunk, chest, face and even female parts. I feel so tired, but my mind races with so many thoughts and cannot sleep at night. Am up tossing and turning or crying to my husband. The worst is recently I began to have painful shooting sensations into my hands and feet and tingling. Sometimes even holding the steering wheel of my car hurts my hands. Others times the pains just shoot for no reason. I feel sensations of heat and cold in my hands in feet. Mostly my ring and pinky fingers. My lips are tingly and feel slightly burned. Iím terrified that I will get worse and not better. I have gone to my regular doctor twice in which he did a whole bunch of blood work for CBC, ANA, RF and sed rate plus a urinalysis. He said all the results were normal. He sent me to a rheumatologist to set my mind at ease, so I went and the rheumatologist said Fibromyalgia and prescribed Elavil 10mg at bedtime. I just donít understand how a perfectly healthy person could just develop fibromyalgia. Now I can barely do 20 minutes of aerobics maybe 3 times a week and forget about weight training, I canít even raise 10lbs above my shoulders. I Took the Elavil as the rheumatologist suggested for 12 nights and just kept feeling worse, the pain is so bad at night so I made an appointment with a Neurologist. He performed the regular in office test of coordination and muscle and said that everything neurologically looked fine, didnít see any muscle weakness despite how I feel. He said the only test he would perform on me would be a spinal tap and he doesnít even think that would yield any results. God I really am scared to have that done. He said to stop Elavil and gave me Paxil CR 12.5 mg to try. Thinks is all anxiety. Iíve been on Paxil CR now for 9 days and feel worse everyday. I pray everyday it is anxiety and the change of marriage and a new life but Iím terrified every minute of every day how awful I feel. I know that I do have anxiety and nervousness as a result of my pain. I feel in my gut that it is from the Hep B shot and I canít stand the guilt I feel for doing this to myself, especially since I was at no risk to get Hep B. I was stupid to have asked for this vaccination! None of the 3 doctors believe its from the shot. I worry about Neuropathy, CIDP, ALS and MS. If anyone has any input I truly appreciate it. Its so not fair to my husband to start our marriage off like this, we planned on trying to have children next summer and fear that I will never be able to. If you made it this far, thank you for reading.[/QUOTE]


Stephanie,
I am sorry to hear you are having so much trouble. It sounds like when I first got married. I did not have all of your troubles but, I have been sick and we have had deaths in my family and now I have ALS like symptoms but Dr. told me it is not that. I have only been married two years.

From what you described it does sound like you have Fibromyalgia. I am not sure what it is caused by but, my understanding is that stress can bring it on and also make it worse. I have a friend that has had it for a while. One thing you may want to look into is a book called 5 HTP. The man that wrote it is a Dr. and he describes treating it with this over the counter supplement. Some of your symptoms could be MS but, I think you also have sensory problems with it as well. Please try not to worry. I do know that anxiety can make things worse. Not sure of your religion but you might want to try praying. It can be calming as well. Best of luck to you and your new marriage.

Paul
[QUOTE=Stephanie6603]Hello everyone. Posting on these boards is usually not me, but when I read and see the compassion that people have, I thought it was worth a shot. Iím in such desperate need of help I donít know what to do. Iím a 28-year-old female, healthy, just lost 90 lbs in 13 months. Over the last year, I went to the gym 3-4 times a week, weight trained and did aerobics, planned a wedding and worked full time plus waitressed on Saturdays. I was married in June and came home from my honeymoon on June 22nd. The last week of my honeymoon I began having stomach pains and loose stools. At first I thought a bug since I was on a Caribbean Island, but it was relentless so I attributed it to my irritable bowel that I was diagnosed with freshman year of college (1993). Coincidently, I received my third shot of Hep B vaccination on June 24th. Over the next few weeks, I did feel blue that the wedding was over and back to reality. I started to develop urinary frequency and a painful bladder and burning after urination. My Gynecologist said everything on that end was fine and referred me to a urologist. No signs of an infection! After seeing the urologist, she suspects pelvic floor tensed muscles or something called Interstitial Cystitis (IC). After reading information about IC I was obviously upset to find out that the outcome is not positive I couldnít imagine why my bladder felt so bad. Anyway, as time passed more and more ďsymptomsĒ were coming out. Three months later I can tell you that my body hurts in so many places. My shoulders ache, mid to upper back have severe pains, deep pain in chest, stomach pains, legs feel weak and shaky like i can't support myself, feel like my walk is off, even pain in my rectum. Plus sharp, shooting pains ALL over. Sometimes I get this feeling that comes over me and I donít know how to describe it but as my whole being feels so sick and I feel like my legs wonít walk, (but they always do). I have small muscle twitches or feelings of like bubbles all over like my calves, trunk, chest, face and even female parts. I feel so tired, but my mind races with so many thoughts and cannot sleep at night. Am up tossing and turning or crying to my husband. The worst is recently I began to have painful shooting sensations into my hands and feet and tingling. Sometimes even holding the steering wheel of my car hurts my hands. Others times the pains just shoot for no reason. I feel sensations of heat and cold in my hands in feet. Mostly my ring and pinky fingers. My lips are tingly and feel slightly burned. Iím terrified that I will get worse and not better. I have gone to my regular doctor twice in which he did a whole bunch of blood work for CBC, ANA, RF and sed rate plus a urinalysis. He said all the results were normal. He sent me to a rheumatologist to set my mind at ease, so I went and the rheumatologist said Fibromyalgia and prescribed Elavil 10mg at bedtime. I just donít understand how a perfectly healthy person could just develop fibromyalgia. Now I can barely do 20 minutes of aerobics maybe 3 times a week and forget about weight training, I canít even raise 10lbs above my shoulders. I Took the Elavil as the rheumatologist suggested for 12 nights and just kept feeling worse, the pain is so bad at night so I made an appointment with a Neurologist. He performed the regular in office test of coordination and muscle and said that everything neurologically looked fine, didnít see any muscle weakness despite how I feel. He said the only test he would perform on me would be a spinal tap and he doesnít even think that would yield any results. God I really am scared to have that done. He said to stop Elavil and gave me Paxil CR 12.5 mg to try. Thinks is all anxiety. Iíve been on Paxil CR now for 9 days and feel worse everyday. I pray everyday it is anxiety and the change of marriage and a new life but Iím terrified every minute of every day how awful I feel. I know that I do have anxiety and nervousness as a result of my pain. I feel in my gut that it is from the Hep B shot and I canít stand the guilt I feel for doing this to myself, especially since I was at no risk to get Hep B. I was stupid to have asked for this vaccination! None of the 3 doctors believe its from the shot. I worry about Neuropathy, CIDP, ALS and MS. If anyone has any input I truly appreciate it. Its so not fair to my husband to start our marriage off like this, we planned on trying to have children next summer and fear that I will never be able to. If you made it this far, thank you for reading.[/QUOTE]
HI I have fibromyalgia as well as ALS. Even before I got to what the rheumatologist said I was thinking you may have fibro..Look back at the first part of your message about all of the weight loss, work outs and extra working you did.That could have been enough to trigger fibro. I am also a physical therapist assistant with 28 years experince. You need to stop concentrating on everything and relax. They best thing is to try to get deep sleep going. The elavil at bedtime is to help you sleep deeper. Deep or REM sleep is the best for decreasing fibro. All that worry does not help at all. Eat healthy foods and just do simple stretching exercises in water if possible. No aerobics or stressful exercises for a while. All of this being teriffied of things does not help. When I was 21 I was told I had 5 years to live due to lupus. Instead of looking forward to dying I went to college the same year I was supposed to die. I earned my degree. Was on the deans list. You have to learn to chill out or you wll keep your body in a constant state of stress that does not help anyone. Hope this helps Janet Alliesmom
Oh My Goodness! You have truly touched me. I too suffer as you do. I fear that I have MS, but in reading your post (I was just browsing) I too have alot of your symptoms. The only difference is I have double vision, hemi-paralysis, severe migraines, hearing and teeth problems. I can't comment on ALS, but I can tell you that you are not alone. They (Dr's) told me I had a conversion disoder, nice way of saying you are CRAZY, I saw 3 Shrinks and Neuro-Physco. One said I was loony (She kept talking about my past, Look Lady the past does'nt have a darn thing to do with pain, If I did'nt suffer as a child, I would'nt be the strong person I am today) 2 said It is Medical and the other said Quit your job, it is makeing your Medical Condition worse. Now I asked myself what medical condition, no one told me about any medical condition? So what I am trying to say, You are in control of your health. Take what you want and leave the rest. Dr's are not god and by all means.....A Dr that got a 65 on his exam is still a Dr. I sit and cry sometimes because it is so unfair. I am only 30 by the way and I had only been married for 2 years with 2 children. As it is not fair for you. I have told my husband many times just leave me, I am tainted, disabled,and ruined. In 1997 I weighed 175 #, in 2001 115 #, now 153 (due to meds). I went from Orca, to Sexy, to just chunky. But they don't see the link, hum! They sure are smart, them docs. It is ok to have break downs, but don't ever keep them inside. These boards are a great way to vent without the burden on family and friends, and beside you meet some really neat people that really understand and are willing to lend a shoulder. Good Luck! If you feel like venting, you can find me in the MS Board.

Hey! Always talk to your Husband. I found that my husband is hurting inside too, if not even more than me. I see him staring at me and I know he hurts.

Kim
Wishing you a liftime of being pain free





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