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blrw41

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Learn about ALS
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I will start at the beginning because I do not know what is relevant and what isn't.

I am now 47 years old. Separated since April after 20 years with a verbally abusive man. Struggling to support myself and 2 teenagers.

I was always awkward and uncoordinated. A big clumsy girl. But basically healthy. A few years ago I stopped walking at the track because my ankles would get stiff and burn where leg connects to top of foot. I got tired easier and started having a lot of pain in my back between my shoulder blades. Hips and knees ached all the time. Right wrist became painful, then hand, inside of forearm and shoulder. Diagnosed with carpal tunnel and wore brace and took prescription naproxen. Kept complaining to doctor about feeling tired and weak and not wanting to do things. Dr said lose weight and take depression medicine. Had mild hypertension.

A year and a half ago legs felt tired all the time and knees hurt. Would come home from work and have to lie down. Had trouble sleeping, doctor thought maybe sleep apnea. In fall 2011 had severe restless legs at night or while sitting, not always confined to legs. Started stumbling sometimes, legs felt heavy and tired. In Nov 2011 I fell and hurt my knees. Started having problems getting up from seated position, had to push up with my arms. Had trouble getting to the bathroom on time. Dr said maybe nerve problem in back but I had no insurance at that time so nothing done but bloodwork which was always fine. Fell again in Dec 2011, had to be helped up, legs felt like rubber. More falls after that and extreme difficulty getting up because of bad knees. Hot flashes all the time.

Got a promotion and insurance and went to different doctor in May 2012. She suspected MS when I shuffled in. By then my left foot dragging, ankle tight. Dropping things. Funny spasms here and there. Legs muscles would tighten and spasm at night. She ordered brain MRI which was ok. Sent to neuro who did EMG and nerve conduction thing and said looked like nerve problem in neck and upper back, ordered MRIs of cervical and lower back, he said looked fine. Did EMG again and said something wrong with muscles. Sent to another neuro for second opinion. He said saw disk in neck pressing against spinal cord. Sent to another doctor who agreed.

to be continued...
 
I was sent to a neurosurgical clinic and had MRI of neck again but with flexion and contast and one of thoracic spine. By this time I had no balance and had to use a cane, left hand and arm weaker. Back between shoulder blades very painful. Had ACDF surgery on Aug 27. Went to rehab hospital for a week. They gave me a walker because I was a fall risk and feet still dragged. Was not suppose to lift arms above shoulder height. Went back to work using walker but used cane at home. Tired easily but hopeful the nerves would start to heal as the neurosurgeon believed they eventually would. Then in October suddenly felt worse. The physical therapy fatigued my muscles so bad, I wasn't making progress. Seemed to get worse by the day. Back extremely weak, legs dragging, difficulty getting out of my car, arms weak couldn't carry anything. Then fingers messed up, thumbs weak, writing deteriorated, urinary problems extreme. Choke easily (but had this problem for years). Xrays showed neck looked fine, healing well. Getting very scared, sister takes me to emergency room of a good teaching hospital. Admitted and looked at by neuro team. Bad results from another EMG. Neurological team believes its motor neuron disease. Ordered more MRIs (open ones at another place) but insurance refusing to pay. Sent home to wait. I don't feel like I'm dying. But I do feel sick and achy and nothing's gotten better. But somewhere inside me there's hope that they are WRONG.
 
Birw41,

You have been through the mill and then some. Glad you found us; you will find reliable information and above all, great support from the folks here.

Yes, let's hope and pray they are wrong about MND. You seem to be getting excellent follow up and I hope also that you do not have to sit waiting too long for your insurers to approve additional tests. In the meantime, try to relax as best you can. If you need anything, that we can provide, please do not hesitate to ask. You are amongst friends here.
 
Sent to moderation. Please stand by.
 
Wow. You've had a rough time for sure. You've come to a great community and I know others will soon chime in with words of wisdom and support. I too hope this isn't ALS and will keep you in my thoughts. In the meantime, you will find helpful past posts about coping with your physical limitations and other tips that can make day-to-day life a bit easier. You can peruse archived topics or use the search function to tap into this vast knowledge base. No matter your ultimate diagnosis, we're all here for you.
 
Is it usual in MND to hurt all the time? I almost always have pain all over but especially deep ache in legs and always have the feeling like I'm on the verge of coming down with something or flu-like feeling. And have spells of extreme sleepiness.
 
Is it usual in MND to hurt all the time? I almost always have pain all over but especially deep ache in legs and always have the feeling like I'm on the verge of coming down with something or flu-like feeling. And have spells of extreme sleepiness.

I am still learning myself and fully understand your fears right now but one thing I have learned from this forum is that MND/ALS seems to affect each person in slightly or vastly different ways. I understood there was not much pain but while mine is not like you describe, I do have aching in my right arm and right leg muscles. When I try to use my right hand now it also cramps up but other then the muscle twitches I don't have spasms.

I'll be praying they find something else less serious in your case but please keep us posted.
 
Upper Motor neuron issues--spasms and the like--can indeed cause muscle pain that can be quite severe.

There are some meds that can help with some of that discomfort--such as Baclofen. I could not tolerate the spasms and cramps until I finally got a neuro that knew what she was doing and gave me the right med combo to help.

I'm sorry you're fighting with insurance issues for required tests. Sounds like your issue was complicated by neck/spine issues. I'd suggest contacting the ALS association and get a referral to a neuromuscular specialist if you haven't done so yet.

Ask any questions you may have!
 
I've been told there isn't a neuromuscular specialist, I would have to go out of state and have no way to do that.

I have been taking baclofen for almost a month. Seems to help a little with the leg spasms. I take ibuprofen for pain, helps my back some but not my legs much. My upper arms hurt on the sides...feels like I got a monster shot in each arm.

My hands have started back twitching today, driving me crazy.
 
Ah hon, I'm sorry!

How far are you from TX or FL or a larger metro area? It might well pay you to make the drive if you're able to be evaluated by a neuromuscular specialist at least once that can make recommendations to your local doctors.

It's possible your baclofen dosage needs tweaked or something else added. You should not have to deal with pain. It's treatable and you have the right to have it treated.

The first thing my neuro did (the ALS specialist I saw) was prescribe baclofena and valium for the spasms and cramps I was having. The pain from them was intolerable for me.

I also found out on my own that walking helps with the spasms and cramps -- I walked daily when I was able to--using my walker each time for safety. I found it helped a lot with my leg issues.

The MDA will pay for a diagnostic exam to be diagnosed if necessary. You obviously need to see what is going on so you know what direction to take next.

What is it they are wanting to MRI at this point? Your spine again? Open MRIs aren't nearly as accurate as the older style, I don't believe. (And they are generally more expensive)

Generally, after spinal surgery, MRIs are approved post-surgery to be sure everything is 'knitting' properly.
 
off to moderation, sigh. Check back
 
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