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Suspect I Have This, Or Am I Crazy!
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Good day: Sorry to bother you nice folks, but I would deeply appreciate some feedback. I am at my wit's end with this, and totally doctored out.
I also am on another Daily Strength forum, PEACE, Parents of Adult Estranged Children, so I have been through a lot last few years. I have had problems with fatigue for years now. But here is the scenario from last two years. Saw Primary doc for fatigue, muscle weakness, and serious shortness of breath. . Legs feel like rubber when I climb the stairs in my house. Some times are worse than others. Some leave me very dizzy. Doctor watched me walk. I walk with a slight limp, cause unknown, on right side. Doctor said: "I think you may have Myasthenia Gravis". He sent me to neuro doc. He did blood work and muscle function tests with needles, etc. No MG according to neuro. He did find MGUS, meaning I carry marker for Multiple Myeloma. So, off to Cancer Center. Had chest CT scan for pulmonary embolism, full body PET scan for myeloma. All clear. Sent to WASH. U. in MO for shortness of breath. No asthma. Sent to gastro doc who found achalasia, difficulty swallowing, swallowing muscles not opening to let food through. Had treatment for that two weeks ago. Worked for four days. In mean time other symptoms worsening: Shortness of breath, Chest muscles do not want to expand, and vocal cords constantly infected and swollen from food upchuck. Weak muscles. Feel kind of weird, hard to describe, like the blood is being drained from them. Legs feel like rubber, and feel major fatigue when climbing stairs. Ribs hurt, upper back hurts. Saw primary two weeks ago. He said I am merely unconditioned. So he wants me to walk one mile per day and see him again end of month. Am doing walk, but doesn't seem to change anything. Shortness of breath the same, have more energy with walking, but at certain times overall fatigue still there. Have had problem with exercise for a few years now. The more I exercise the weaker I get until after about 2-3 months I crash and have to rest up for weeks to recover. Concerned that may happen with this daily walk. I decided to post here after I climbed stairs this morning, and fatigue and feeling of blood draining from legs nearly bowled me over. When I awaken in the morning I feel like I am shaking all over on the inside. When I exert myself I have trembling in my fingers. At times fingers just tremble. As I type this I am having minor tremors in fingers. Now, new symptom, eyes feel filmy, left is worse, right not as bad. Not affecting vision so much as just irritating. Eyes weaken easily and I get what I call "Eye" headaches if I read too much, etc. There are days when fatigue is so bad all I want to do is lie on sofa, but keep moving. Have given up many hobbies because use of certain muscles causes pain and fatigue. Am I crazy, or is it possible that I have MG in spite of neurologist? I live in Missouri, am a farm wife, and hate being this disabled. Is doc correct? Am I merely unconditioned? I used to walk four miles a day, and can't believe this is the new me. Oh, I also have lost 27 pounds without trying since last fall when this kicked into high gear. Any help would be deeply appreciated Aerynsun Posted on 05/06/12, 10:59 am |
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Aerynsum,
Do you have dropping eyelids? Did he test you for both the Arch and MuSK antibody? Have you had a ct scan of your chest to check for an enlarged thymus? Also, did you have a EMG or single fiberEMG? Sorry for so many questions, but trying to figure out your history. Some of us on this site, including myself, have been diagnosed without having positive blood test. We were diagnosed with clinical symptoms, CT scan showing an enlarged thymus, and/or a trial of medication to treat MG. This is known as being sero negative. I would recommend going to a doctor that specializes in MG or at least a neuro that specializes in diseases that affect the neuro muscular junction. MG can be very tough to diagnose and some of us are living proof. In fact, there are some that post on the board and they are still looking for answers. Best of Luck, J 
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Hi Aerynsun, I an not a doctor but I am one who suffered as you do & had same silly responses from doc(s), keep plugging!!! Even ask if doc will let u try some Mestinon for a bit, that is listed as one way to dx an mg possibility, my research shows if a healthy person, of course not on a full 180mg a day dose, does this type of dx treatment won't suffer side effects, possibly some diarrhea but basically if u hv MG & the Mestinon helps & u tell ur doc if it is helping & he can gradually increase dose or do the dosing as he sees fit, u got it, if no help probably don't have it. Plain & simple- read thru these post it helps & google, journal ur symptoms & present to ur doc in SBAR form(u can google SBAR) it helps u be precise & them take u serious! Get ur med records every time u go! Happy hunting :) MeLisa
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Aerynsun,
Welcome, and don;t give up. Agree see a neuro that specizes in MG. I am sero-negative, but was diagnosed by my neruo here in Dallas.. Agree keep a daily journal it will help you remember and you can provide to your doctor. Good luck and let us know how you are doing. Annette
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Hi: Will try to answer as best I can
Had CT scan for Pulmonary Embolism. Best friend is a nurse practitioner. She said they may not have noticed enlarged thymus if they were looking for an embolism, so CT scan still exists, just needs to be re-read. good ideal to check scan for thymus issues. Always feel pressure and pain right behind breastbone. Some nights only way I can fall asleep is with hot water bottle on breastbone and stomach. Blood work was done at Neurologists office, but unsure what. he did a blood test for MG and ruled it out, also tests for RA, and MS. The test done with the needles was done on arms and legs, not face or fingers, or eyes. So am unsure if EMG or Single Fiber EMG. Eyelids do not droop. Every so often, I have trouble getting mouth for form words. It's like my brain sends the message, but there are glitches and delays in processing my mouth muscles to get it right. I slow down, and think slowly and get it right. If I were a software program I would have been trashed years ago. Have had chronic neck pain and jaw stiffness for years. Always thought it was from tension. I was about 30# overweight. Thought being overweight may be causing muscle weakness. Lost weight from illness, and still weak. Muscles are wasting away. I have this larger torso with sticks for legs. It's so weird. Am hoping one mile walk will help that. Thanks a bunch. Aeryn
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Many of your symptoms do match up to MG. I believe around 20% of MGer’s test negative for MG.
You need to conserve your energy until you get a diagnosis. The last thing we want is for you to end up in the hospital in a crisis. MG patients have to be careful about conserving their energy, which we call our nickels, article can be found in the link below. Many of our members have been admitted to ICU with a crisis before they got their diagnosis. If you have difficulty breathing or other problems that warrant, do not hesitate to go to the ER. I agree with the other members recommendations. You many also wish to check out some great resource information on the “MG Links and News” located at http://www.dailystrength.org/groups... Wishing you the best. Keep us posted and take care. Bruce
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You are certainly not crazy and yes you can have MG in spite of your neurologist. Your neurologist may not even have done all the blood studies that are available (especially if it didn't take at least a week or more to get the results).
Your description of your problems may not be entirely classical MG, but it sounds just like the history of many of us who are posting here who are seronegative (negative blood studies). Are your filmy eyes associated with redness? That was one of the first eye signs I had, related to not blinking enough during the day and not closing my eyes completely at night. Normal saline eye drops (artificial tears, not the red eye stuff) that you use like lip balm (whenever your eyes feel the least bit dry) would help with that. And as others have said, we really need to be seen by neurologists that are familiar with MG and have treated a number of patients. b.
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I agree with what everybody ealse said. I would like to add that with your eyes,,,,I didn't realize this until I read about it and started to pay attention. I get those eye headaches if I am not careful. I became so used to this that I didn't even realize I was doing it. When you read and throughout the day,,,,,are u arching your eyebrows up in order to see proplerly. I have been sick for years, with weakness. not near what I have now. I think I have been arching my eyes up for years and it is what causes my headaches. When I started to pay attention to my eyebrows the headaches when away, it gives me kinda of a squinty look but at least I don't have the headaches. Now days I have proggressed to not even being able to keep my eye open sometimes, I just have to let it rest. Anyway just a thought about your headaches. Hang it there girlie and find a mg doc.
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I am so sorry you are going through this. Really sorry.
Some weeks walking helps.....some weeks I get worse. Nasty disease. I think a neuro who specializes in MG would help you. Take care Ann
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oh and ....neck brace or even scarf helps my dissiness. How is driving for you? It takes so much out of me if I drive over about 1 hour and a half.
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