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Old 03-14-2013, 12:17 AM   #1
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I am mad.

I have stayed positive up until this point. I've been sent through the doctor rodeo for 2 weeks straight for a second opinion. The Neuro's sent me to physical therapy and a psychologist. I went and was told by pt there was nothing she could do because there was no muscle to work with. She suggested occupational therapy to learn how to live with this. (Stair rails and shower stools) The psychiatrist says its medical and they can't do anything except help me cope. Cool. I was given a walker, a brace for my FD, and a brace to keep me upright. (They gave me props for not giving in to a wheel chair) I failed a swallow study and nerve conducting test. I did Pass the 10 minute EMG needle thing. I go to my neuro today and he tells me there is no surgery or pill that will help me. I start to cry because he tells me there is nothing he can do and to see my therapist. He told me I was stressed.?!?? I can't walk, my foot dropped, I am now down to 90 pounds.( I am sad) I have over come all medical challenges thrown in my path, I have always respected my doctors, kept positive and hopeful but today I feel like I have been to a bunch of over paid guessers. (Sorry for the wording)Stressed...of course i am. I asked him if he could do a blood test, urine, MRI, or look in the spine and he said no? No one has done a blood test.

I am so lost right now. Am I now considered a "difficult patient" because I refused to accept ALS as my diagnoses. I looked for answers and went out for second opinions because I couldn't believe it. I am told I don't have ALS by the EMG results and cried tears of joy. Now after the tests and things getting worst, I break down for the first time in tears of sadness and loss of the body I once had that is failing me. I want to be fixed. I want answers. I want to walk without assistant, bath without falling, lift my daughters up into the air, eat without choking, and just know what to do now.

Any thoughts would be wonderful right now. I'm sorry if I look like a big baby. I'm just frustrated. I hope I haven't offended anyone, its not my nature or intention.

Thank you for reading. Any response good or bad is good to me right now.

 
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Old 03-19-2013, 04:32 PM   #2
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Re: I am mad.

Um, get a third/fourth opinion? Every neuro is trying to rule OUT ALS -- neurology is a study in ruling OUT diseases -- zebras. Go to Cleveland Clinic or Hopkins or the like and get a definitive diagnosis.

Best wishes to you, not knowing is the worst. Been there, done that.
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1/18/13: PTT transfer, peroneal longus to brevis tendon transfer, calcaneal osteotomy with medial slide, plantar fascia release
9/11/13: 4 toe fusions

Last edited by PesCav; 03-19-2013 at 04:42 PM.

 
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Old 03-20-2013, 07:52 AM   #3
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Re: I am mad.

Thank you for the response and yes, not knowing is the hardest part. I took the local approach first and now may be going to the mayo clinic in AZ. Traveling and expenses have been a challenge. Thanks for clearing up what Neuro's do as well. I was confused to what they did. They told me my brain wasnt connecting but yet they couldn't do anything neurologically which did not make sense.

The clinics you speak of, how far are they from Oregon?

Thanks again, good thoughts and wishes to you.:-)

 
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Old 03-20-2013, 02:34 PM   #4
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Re: I am mad.

I only have experience at Hopkins in Baltimore, MD. Cleveland is closer to you. I have a congenital neuromuscular disease called CMT, but I had a period of rapid deterioration and ended u at Hopkins, where I was dxd definitely with both CMT (via genetic profile) and "inflammation " (via spinal fluid). What I like about going to these world-recognized facilities is that you will get answers fast. But prepare for whirlwind, invasive tests, etc. if your health is important to you (and I think it is) bite the bullet and pay for travel, else deal with your local HC system.

Wishing you all the best.
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1/18/13: PTT transfer, peroneal longus to brevis tendon transfer, calcaneal osteotomy with medial slide, plantar fascia release
9/11/13: 4 toe fusions

Last edited by PesCav; 03-20-2013 at 02:37 PM. Reason: Oh yeah, and MAYO! Lol, with Hopkins in my back yard, I can't justify the rest. Not saying Hopkins is better, just closer!

 
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Old 03-20-2013, 05:17 PM   #5
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Re: I am mad.

Thank you for sharing your story. My health is very important. Unfortunately, It has taken me from my career which equals no $. I've sold a lot of my things and am saving. So, I am trying. :-) I will ask my doctor about your recommendation for sure!!

I was really discouraged because I was told OHSU (Oregon Health Science University)was the best HC here in the northwest with the best specialists and that I would be taken care of. I was seen by a one person and told there was nothing they could do and they did no further tests.:-( it sucks.

Good luck to you and your journeys! You sound amazing!:-)

 
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Old 03-21-2013, 06:52 AM   #6
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Re: I am mad.

Good luck to you. I was treated with three months of IVIG and the inflammation stopped though we never identified what the root cause was despite extensive testing. I did ultimately and recently have one foot surgically corrected for function that was lost and didnt return after that episode. I met many doctors in the Neuro program at Hopkins during my diagnosis and treatment period, they work as a team so you are really consulting with several doctors when you are there. I have huge respect for them, and my primary Neuro was incredibly kind to me and would field my worried calls.
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1/18/13: PTT transfer, peroneal longus to brevis tendon transfer, calcaneal osteotomy with medial slide, plantar fascia release
9/11/13: 4 toe fusions

 
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Old 03-23-2013, 05:48 PM   #7
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Re: I am mad.

Quote:
Originally Posted by PesCav View Post
Good luck to you. I was treated with three months of IVIG and the inflammation stopped though we never identified what the root cause was despite extensive testing. I did ultimately and recently have one foot surgically corrected for function that was lost and didnt return after that episode. I met many doctors in the Neuro program at Hopkins during my diagnosis and treatment period, they work as a team so you are really consulting with several doctors when you are there. I have huge respect for them, and my primary Neuro was incredibly kind to me and would field my worried calls.
I feel fo you I'm in the same boat, been to Cleveland seen many docs and they sent me home with no help developed mind problems and gi issues li feel I'm in a different world. All conflicting ideas from doctors. Can't help myself anymore.

 
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Old 03-28-2013, 03:08 PM   #8
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Re: I am mad.

I will probably be hated throughout the "interwebs" for saying this, but psychological disorders closely mimic real diseases.
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1/18/13: PTT transfer, peroneal longus to brevis tendon transfer, calcaneal osteotomy with medial slide, plantar fascia release
9/11/13: 4 toe fusions

 
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Old 03-31-2013, 09:55 PM   #9
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Re: I am mad.

so many things i want to say .i type it then deleate it.its so hard to not sound ego centric. ive had problems with my muscles since childhood ask so many gp drs over the years got fobbed off finally getting answers because its getting worse.ive had myotonia for over 30years just didnt know what it was till neuro did emg. ive been called hypocondriac by parrents spastic by work mates lazy and crazy etc still waitin for exact genetic name but i am allready feeling vindicated IF YOU DONT FEEL RIGHT NEVER STOP ASKING WHY?? MY LIFE COULD HAVE BEEN SO DIFFERENT IF I HAD!!

 
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Old 06-25-2014, 08:39 PM   #10
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Re: I am mad.

Its been over a year since your last post, but you said one thing that made me laugh so hard, I can't wait to pass it along. You said, "I've been seen by a bunch of overpaid guessers"... YOU NAILED IT. I DONT know how you're doing, or if u even read these fforums anymore, but from one disgusted patient to another, I'm sending my love and prayers your way. I like to imagine you're either improving or involved in a promising clinical trial for whatever was tormenting you. God bless

 
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