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Ive been pondering if I should be tested for ALS or not. The problem is I dont trust doctors and have avoided going to one for the last 6 years. Here's my story.
9 years ago after more then a year of going to the doctors with complaints of muscle soreness and fatigue I was finally diagnosed with Fibromyalgia. Shortly after that I was also diagnosed with Hepatitis C. A liver biopsie showed scirosis in stage 3. I was put on interferon treatments 2 times . Both times failing.
6 years ago during my second round of treatments I had a falling out with my doctor and he dropped me as a patient. This was devestating to me , I was in the middle of treatments. Since my past experiance with doctors had been difficult, they always look at me like Im crazy or somthing. I just couldnt face a new one and go through it all over again. So I did not seek out a new doctor. Instead I chose to ignore my symptoms and get on with my life.
Over the last 6 years symptoms of the fibromyalgia have appeared and dissappeared. I just work when I can, and rest when I cant. I have managed without any meds. It has been very hard at times, but my mistrust in doctors have prevented me from seeking help.
The thing is this last year has been different. My symptoms have changed, they no longer go away at all. Im so very weak all the time. Just lifting my arms to brush my teeth is exahusting. While taking a shower my legs get so tired I must sit down. When I manage to climb up stairs, by the time I get to the top of the stairs I cant move. My leg muscles feel like they just ran 100 miles or somthing. I seem to trip alot. Just trying to step over somthing small. It seems I dont lift my foot high enough or somthing.
I have also had changes in my voice. As a person who loves to sing, this is awful. I just cant do it anymore. I once had a powerful voice. I could mimic Janice Joplin to the T. Not anymore. My voice is rough sounding, and nasal. When I attept to sing, I just dont seem to have the strengh to belt it out anymore. Its just not strong enough. I stopped singing, I just cant do it. Even talking is exahausting.
Last summer I attempted to go to a doctor. I went to my husbands G.P., I told him I was not doing good and what was going on. He gave me a knowing nod and a pat and said lets see where your liver is at. So he sent me for some blood work. When the test results came back, he said I was fine. In fact he said my liver tests were great and asked " Are you sure you have Hepatitis C"? He laughed a little and said not to worry I was fine. So I havnt been back.
Since then, (Aug. 06), I have continued to get weaker and more exahausted. I live in Alaska and the cold is unbearable. Just getting from the house to the car is agony. The instant I get chilled it seems as if my muscle just freeze up and become painfully stiff.
I used to get relief from my symptoms in the winter by going to a warmer climet. We own a house in Panama and I could spend the winter months there realatively symptom free. Unfortunatly this didnt work this year. I felt the same. Too weak to even go to the beach. I just seem to be to tired and every little movement seems to worsen my condidtion. The more I try to work my muscle even with small tasks, the weaker they get.
So Im at a loss as to what to do. I know that I just keep getting worse and worse. The past 6 months have been a downward spiral and I cant seem to stop it. I now spend 5 out of 7 days sitting in my recliner. Just too weak and tired to get up.
Ive started to wonder if my condition might be differnt then thought. I started researching, which led me here.
I might also mention that my Uncle died from ALS 7 or 8 years ago. Im not sure if anyone else in my family has had it or not.
My distrust in doctors prevents me from just randomly selecting one to go to. Im afraid if I go to another one who is patronizing, I might not attempt to ever go again.
So what do you all recomend for me? Should I go to a doctor and request to get tested? If so, where do I start? Who should I go to? Im just so confused and tired.
Maybe Im worrying for nothing. Maybe it is the fibromyagia, but my intuition tells me its not. Somthing is different.
Thanks for any advise you have, I really need it.
Best Regards,
Lisa
 
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By the way, I forgot to say my age. Im 43 but I feel 90. I know I cant continue on my own any more. I must find a doctor to trust soon.
Thanks again in advance. Please give me some advice as to where to turn now.
 
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Hi Lisa,

I am really sorry that you feel so bad. In many regards we have a lot of the same symptoms and some PALS on this forum don't think I have ALS. I, too, have suffered that unbelievable exhaustion you speak of. I, too, was told I have fibromyalgia, and then later told chronic fatigue along with it. Whether this is the case for you or not, a neurologist can diagnose both of those syndromes and ALS. You absolutely need to go to a neurologist. Get tough, stand up for yourself and make the appointment. Be adamant to the doc that you need help. I did that and while I am still going through further testing I have been given meds and aqua therapy to help build my stamina. I even had a hard time showering and washing my hair. Now that I have started the physical therapy I can stand through a shower and I am off the couch more during the day. You may not believe your diagnosis of fibromyalgia, but that's the one they have given you so take that diagnosis and get treatment for it, then you will see if you need further testing or help. If you research fibro on line you will find many ways to treat it. In my opinion, and some of the docs I have spoken to, fibro is caused by an unknown illness. Still get help to try and feel better and a good neuro to get a diagnosis. Good luck and let us know what you decide! Leslie
 
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Hi Lisa. Sorry about your problems but welcome to our forum. First thing to do is find GP that you trust. I don't think you can just call up a neurologist and make an appointment without a referral. Do you have any family or friends that think their Doc is great? Ask around and then see if you can get in to see the one you think might work for you. Tell that one your symptoms and mention the fact of a Uncle with ALS. He might not think you have it but at least he might start to think of things Neurogical. Hope this helps. AL.
 
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Thanks so much for the replies. I know I need to see a neurologist, the problem is finding one I would trust. I have lived in Alaska for the last 15 years, and have yet to hear good things about any doctor here. In fact the joke is that we only have the doctors here that cant make it in the lower 48. If they were any good they wouldnt be stuck up here.
My bad luck with docs is alot more envolved then I have disclosed. Its just way to much details to write in a post. I wish I could just forget all my bad experiances and make myself go, I just havnt been able to do that. At least not here, Alaska docs are not an option.
I really would like to find someone outside of Alaska. Ive been checking on the Mayo Clinic in Scottsdale, AZ. , I belive my insurance will cover me. Ive also read on thier web site that 90% of thier patient make thier own appointment. So maybe with some luck they will agree to see me. I understand its hard to get in there.
I know the odds of me having ALS are very slim, but its just anouther thing to check. So if I can I would like to be tested for the SOD1 gene. Just to start ruling out possible illnesses.
The Doctor who diagnosed me with Fibromyalgia also found the Hep C. He then refered me to a Internal Meds Dr. for the Hep C. That doctor treated the Hep C and ignored the fibromyalgia. He said he thought most of my trouble was from the hep c. and didnt belive in Fibromyalgia.
Now the last doctor I went to said my liver was fine? he didnt even think I had Hep C. and was surprized that I had undergone Interferon Treatments 2 times. Now I know a liver cant heal itself, so how could my liver go from stage 3 of scirosis to being fine? Stage 4 is a liver transplant.
So here I sit in my chair . I will somehow drag my butt to a doc, but it has to be someone who will look at everything .
Thanks Again for letting me vent here, even if its the wronge place for me.
So here I am still without answers, more confused then ever.
 
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Don't worry about being in the wrong place, a good portion of us are undiagnosed, but we all still care about helping each other! And I think the saying about good docs not being in certain states is said just about everywhere, cuz I live in upstate NY and that's what they say about them here too! Good luck with finding a doc. Leslie
 
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Hi LuckyLisa, I also have fibromyalgia. You will have good and bad days. I am always in some kind of pain and have no energy. I have a lot of the same symptoms you have. I don't have the tripping part though. I would recommend that you read all you can about fibromyalgia. You might need something for the pain that is stronger than over the counter. I think I would have another blood test to make sure about the liver since you had different results. Don't give up on the doctors. Keep looking for one that will listen to you. Since you do have someone in your family who had ALS the doctors should be aware of that too. Good luck with everything. Sunshine
 
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