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Ryanw

Member
Joined
Aug 22, 2012
Messages
21
Reason
PALS
Diagnosis
09/2012
Country
US
State
wa
City
Tacoma
Well it has been a long year, I hope this is the right spot to post this.
In February of this year I noticed that I could not lift my foot and walking started to get difficult so I went to my orthopedic surgeon to see what was up (due to the fact that I have a hip replacement in my right hip) He took MRI of my low back and hips and said nothing was wrong. He sent me to a neurologist he did EMG on my legs, they were positive for nerve damage in both legs had another MRI of my pelvis to see if I had a tumor in my pelvis, that came back clean, had all the blood work he could think of done it all came back clean. By now three months has passed I am now walking with a cane I have bad muscle wasting in my right leg and fasciculation’s all over both of my legs. My Neurologist sends to a rheumatologist and I have been through so much blood work and the only thing she has found is an elevated CPK level of 850. She thinks I may have ALS or one of its cousins, and she has now referred me to the local ALS clinic at Virginia Mason medical center, I see them on the 21st of Sepetember.
It is getting scary now I can hardly walk with a cane and drive if this keeps up I won’t be able to work for much longer and did I mention I’m only 38
 
I'm sorry. This part is so scary. Can your primary care physician prescribe something for your nerves? Do you live with anyone? Keep us posted as to how you're doing Sweets. Hugs to you!
 
I will be praying for you. There are still many things it could be other then ALS. I am pretty new to this forum and ALS since my dad was just diagnosed in May so I'm still learning about it. The people on here couldn't be more caring. So, if you have specific questions feel free to ask them. They love to help out . Let us know what you find out. Kim
 
I live with my wife, and I have an 11 year old girl, I am very hopeful it is something other than ALS. ALS runs in my family my grandfather died of ALS.
I will ask the dr for something for the nerves thanks.
I am prepping for the worst and hoping for the best
 
At least your not alone. Hang in there! I'll be thinking of you!
 
Keep us posted and if you do find yourself here there are a lot of people here to offer hope, encouragement and a tons of knowledge.
 
The waiting is so very hard, glad you have a appointment date at the end of this month. We all hope it's not ALS. Please let us know how it goes.
 
Can someone help me with this.
I just got off the phone with my rheumatologist medical asst. She ordered an mri of my legs to look at the muscles to determine if I need a muscle biopsy, to see if there are any "hot spots" of muscle damage and there was not any. My right quad muscle has just shrank away to nothing and there is now no need to do the biopsy. is this good or bad on the road to ALS.

Also my feet get so cold they hurt anyone else have this?
 
It may not be ALS. It could be one of ALs's numerous cousin diseases. Or not. I started off the same way as you. After a year I finally had a diagnosis of CIDP. Then breathing problems and other things occurred and I wound up with an ALS diagnosis a few months later. Rest easy and have hope. I pray for you that it's something simple and easy to correct!
 
I will pray for you!
 
Thank You guys for all prayers
 
Good luck with your appointment on the 21st. In the meantime take care to avoid falling, consider switching from the cane to a rollator(rolling walker with a seat) Rest your body when you feel fatigued. Take whatever steps are necessary for you to remain safe with the physical limitations that you are experiencing no matter what the cause turns out to be.

Should you receive the dreaded DX, Medicare and SSDI can be fast tracked.
 
I will pray for you. I know how scary this is...please take care of yourself. God Bless.
 
Good luck with your appointment on the 21st. In the meantime take care to avoid falling, consider switching from the cane to a rollator(rolling walker with a seat) Rest your body when you feel fatigued. Take whatever steps are necessary for you to remain safe with the physical limitations that you are experiencing no matter what the cause turns out to be.

Should you receive the dreaded diagnosed, Medicare and SSDI can be fast tracked.

Yes I have fell more in the last 2-3 months than I have in my entire life
 
Hi Ryanw, so sorry you find yourself here, hoping that they'll find something else... I was thinking back to my rounds of testing, MRI's, EMG's, spinal, bloodwork, etc... and wishing that they find something wrong, so it wouldn't be the worst thing to find wrong. Oh, the ironies of it all.

You said that you had tested positive for nerve damage in the EMG... from what I understand about it, it needs to be a certain type of nerve damage, recurring (denervation, etc). If you can get the testing data, you may want to talk to Wright to see what he has to say about the EMG while you're waiting for your appt. In the meantime, try to stay safe, use the equipment before you really think you need it... falls are a killer.

Good luck, and keep us posted.
 
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