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Flip4it

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Jan 28, 2012
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Learn about ALS
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US
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Maryland
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Myersville
I'm hoping to meet some people on here that may be going through the same thing as me. For at least a year I repeatedly complained to my doctor about weakness in my hand. He kept ignoring me. Last summer I still went camping canoeing etc...worked an average 14 to 15 hours per day. Starting in October in addition to my hands, my left arm went weak then my right hand and right arm. Now it's almost February. I'm unable to work. I am suffering from severe muscle waste in my forearms, hands, biceps and shoulders. I look like a skeleton above the waist. Now my left foot is atrophying and the muscles in my calves are very thin. It looks disgusting. I still have an appetite. I have been referred to the University of Md. I went to the emergency room a couple days ago because my speech became so slurred my son demanded that I go. They acted pissed off because I showed up before my appt. It's taking forever to get an appointment. Just hurry up and wait as I am wasting away. This is crazy! I'm so scared because now you can see what looks like a worm crawling under my skin....it's my muscles doing this. Something is ravaging my body. I hold my arms close and clenched to my body because in December I have delveloped severe twitching and muscle spasms. They get so bad I swear to God I look like Linda Blair on the bed. I am so upset because I can't seem to get these doctors to understand this is an emergency. I just hear "Oh it takes a while to get an appointment". Neurologist referred me to U of Md. with a "nueromuscular movement disorder" but afraid to tell me what it is. My body just seems to do what it wants and no matter how hard I try, I can't stop it. Now my left foot turns inward and my arms and legs are so rigid with no relief. I don't want to believe that I have ALS but the lesions on my mri aren't typical of MS. I'm scared to death because without question there is something terribly wrong. I can still swallow but have difficulty speaking and my tongue feels thick. Doctors keep asking me about swallowing. How long does it take to get diagnosed? Do you ever have relief from constant muscle rigidity and twitching with ALS? My family is so upset because I don't even look the same. I get sick when I look at a picture that was just taken last September. Definitely not a hypochondriac...ya can't fake severe muscle atrophy. What the hell is wrong with these doctors? It's all driving me to the brink of insanity. Every day....I think.....am I going to get better? So desperate, I'm ready to fly to Mayo Clinic. Any suggestions?:?:
 
Don't fly to Mayo, drive to Johns Hopkins in Baltimore. There is no where better to go than Hopkins. Ask your doctor for a referral. They have a MDA clinic there.

It is typical to have to wait a while for appointments. I hate having to tell you this, as its the last thing you want to hear right now.

While you're waiting to be seen, use that time to gather up all of the test results. Hopkins will want to see the actual MRI films, not the interpretation of the films, etc.

I don't know that much about the University of MD.

Your muscle rigidity could be helped by a muscle relaxer such as Baclofen. Many people with upper motor neuron dysfunction find this medication helpful. Perhaps ask your doctor you see now for a prescription.

Try not to worry. You are not alone, even if you feel like you are. Don't forget that its never ALS until it can't be anything else.

Please let us know how you are doing, and again, keep your chin up, battling the monster called "Unknown" is beyond hard. We know that.
 
This message would be better under "Do I have ALS"? section so your questions can be answered. Moderator help please in moving this post? Thanks :)
 
While it is being moved....flip4it, let me tell you that I am sorry you are going through these symptoms. I know how rough the medical red tape can be...I am still fighting it 2.5 years later. Lets hope it is not this long for you to find your answer.

Obviously...something is wrong. You know it. And your dr. knows it if you have been referred to a neuor muscular movement specialist. Some silver lining perhaps to give you...your symptoms are very similar to mine...expect mine started in legs not arms..and dr's feel that it is something other than ALS now. There are thousands of neuro and movement disorders. Even when you get your appt...there will be more tests to try and figure out what is wrong. Gotta give it some time. Hopefully though when the dr. does see you...they put you on the 'high prioirty' list and you get those tests done faster. Can't rush these things...and you don't want to.

Oh and on the ER...yeah they aren't going to be very helpful unless you are in a crisis life/death situation. They don't have the resources to help out chronically ill patients unless it is affecting their ability to live( ie life threatening infection...breathing issues...etc.) Obviously you did the right thing by going in since slurred speech could be a sign of stroke...but just for the future...if it is just your chronic symptoms they aren't able to do much for ya.

I wish you luck and keep us updated on your status. Hopefully this thread will be moved shortly into the other section and some other members can give you some insight as well.

Good luck to you.
 
Flip4it, great comments from the others... I just want to add that you are definitely not alone, and while you have found our site, it may well be that you don't have ALS, so try to stay positive. Take it one day at a time, and keep moving. Do what you can, don't dwell on what you can't right now. I also wish you luck in finding out what's going on, and hopefully getting some meds to help your symptoms.
 
Thank you all for your well wishes and advice. 4 months has seemed like an eternity....especially when you NEVER get better only worse every day. The unkown is so scary. I was really thinking MS in the beginning except there has been no remission in my symptoms for many months. So frustrating to go from being active to my body not doing what my brain wants it to. I'm not sure how to get this to the not diagnosed section....a little challenged with the computer lol.....
 
Thanks. I don't know how to move it.....sorry a little challenged with the computer :)
 
Richard must have moved it for you.

AL.
 
Flip4it,

I just posted a message on your profile page. (If you're not sure where I mean, click on your own user name on any message, and choose "view public profile" or, just click on your name at the right side of this page, very top.
 
Flip4it

You are not alone. I have been looking for an answer for well over a year. GP to regular neurologist to ALS Clinic. Multiple neuromuscular/ ALS specialists including Mayo Clinic AZ. Multiple tests, scans, E.M.G's, gallons of blood.etc. No clear answers, no relief from symptoms!

My advice, rest all you can while going through this. Sleep will give your mind and body a break. Don't feel guilty about it. You are not well right now. Prayerfully you'll receive some solutions soon. Until then go into survival mode. This will help you make it between the long delays between appointments.

Also use this time to write down and organize your questions for your appointments. Be sure when you are in with your doctor that they thoroughly exam all physical areas of concern. You can ask them questions that you forget after you leave through email, nurse or phone call but you can only show them physical presentations in clinic. If you don't show them, it's another 3-6 months. Doctors should be thorough but sometimes they are not.

Blessings!
 
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