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4myMom1-7-11

New member
Joined
Jan 8, 2011
Messages
8
Reason
Loved one DX
Diagnosis
01/2011
Country
US
State
Maryland
City
Preston
Yesterday, my mother was diagnosed with ALS, but I have been reading online etc. and can not believe this is what she has .. back in Sept. 2010 she was in the hospital with right side numbness/tingling in the arm and leg also slurred speech she had numerous MRI's and CT scans and they found nothing they thought she may have had a stroke but tests show she didnt. They did a spinal tap and the protein in her spinal fluid was elevated but they told us nothing at this time.

She then started to have the muscle twitching and since September the symptoms have gotten worse but its sort of like it will start to get better then one day they will just get worse again on her.

Yesterday she has a appointment at the University of Maryland Medical Center we were there from 9am until about 1:30pm they checked her reflexes, strength, did the shock test and did the test with accupunture type needles and came up with this diagnosis.

How can they get such a huge diagnosis in such a short amout of time?

Is this possible?

If so that is fine I just really need some other opinions.

Thank You so much.
 
Hi 4myMom. I was diagnosed in a day as welll. They sent me for a MRI and other tests to rule out the rest. I got a second opinion a few weeks later after another set of EMG/NCV tests. Basically the same diagnosis. I know it can take some people years to get a diagnosed but it depends on how advanced you are. I'd get a second opinion but be prepared for bad news. Sorry I can't be more optomistic for you.

AL.
 
I'm so sorry you've been going through all of this. You ask if it's possible that she has ALS after the reflex testing, the Electrical testing as well as strength test yesterday, and unfortunately, the answer is yes. I know they began in September thinking it may be stroke, so the leap from stroke possibility to now, ALS is huge. I have no idea if your mother has or had a second problem.

I see Al just posted. I agree you might want a second opinion, and suggest Johns Hopkins if you do want one.
 
Thank you to both of you, if its possible then that is fine we will learn to come to peace with the fact. I already have found a physician at Johns Hopkins to call Monday morning about a second diagnosis if its the same diagnosis then that is fine we are a strong family and we will fight this as long as we can!
 
Very good job. I hope that you find it to be a "kinder problem" when you've been through the Hopkins testing, but at least if it is ALS, there will be an assurance that you've done all you can. I expect your mother is very exhausted today. Stress and fatigue both make symptoms worse with ALS, but also with many diseases.
Ann
 
4mymom I am so sorry this has happened to your mum it is devastating, my husband has been through similar situation thought is was a stoke now it has gone from that to probable lou gehrig's in a matter of 4 weeks or so, very devastating and I really understand how your mind is ticking right now :0( just know the folks here are SO SUPPORTIVE and you will have to think about life in a different way as I have done myself in these past 4 weeks, e.g. spend as much quality time together as possible live,laugh,love Big hugs to you xo
 
After reading how other people first realized they had a problem, my mothers progressed alot faster then everyone elses. She has only had symptoms for 4 months and she can't walk long distances and even stort distances she has to hold on to things while walking (she refuses a walker or cane) when we took her to the dooctor yesterday we had to hunt down a wheelchair just to get her up the elevator and into the office. And all of my moms symptoms seem to of came at about the same time.
 
no one had ever mentioned ALS to us until she recieved the diagnosis how come the other doctors didnt think this was a possibility?
 
From what I have gathered there is no set pattern for als it affects each person differently from onset and progression, my husband is losing his speech very quickly whereas before it was much more insidious, and I have noticed just today how his walk has changed it seems much more clumsy and that was overnight, I'm like whoaaaaa this is crazy, but I have also seen where folks have done this and then hit another plateau so there is no set pattern everyone is different...............
 
Well, ALS isn't often mentioned before the evidence points to it because it is so very hard to hear. Combine that with it being a disease which is diagnosed mostly by ruling out everything imaginable (a whole lot), and then the answers to the question become much fewer. The three big things which were done yesterday are basically the most important things in evaluating. The EMG shows a pattern for this disease, but the problems have to be, I believe, in three areas. Then, there is a different problem not found in the EMG: The reflex check shows a different facet of the disease (think of the story of the elephant, how each person felt something different as they felt and tried to identify the elephant), which is from a different part of the Central Nervous System. When all these answers point to ALS, and all else has been tested (lumbar puncture, MRIs, bloodwork, etc.), they then give the diagnosis.

You're right in saying this is fast progression, if it is ALS. But not impossibly fast, unfortunately.
 
also, i see that it happens in the legs/ankle, wrists/arms or face but she has it in one side of her body.
 
This thread might help in understanding what the testing doctors are looking at:
https://www.alsforums.com/forum/do-...-amyotrophic-lateral-sclerosis-diagnosis.html

I again think that getting a second opinion through Johns Hopkins would be a great idea. I'm not a doctor, just a patient. Your questions must be massive at this point, and while I can't really address them, perhaps someone will later. Be patient, though-- weekends can mean folks are away from the forum.

Ann
Click onto the blue words to read...
 
Sorry your Mom has received this diagnosis. Get a second opinion as everyone else has suggested. That being said the first time I saw a neurologist even before he did an EMG he looked at all my symptoms and tests I had and did his strengths tests etc and said while he could not say definitively he was qute confident a had a motor neuron disease and possibly ALS.

Get the 2nd opinion but I do not think Dr's give the diagnosis lightly. As my neuro told me do not allow a Dr to tell you that you have a termnal disease and then not get a second opinion. Good luck you will be in our prayers.
 
Hi,
Larry has had problems for 4yrs .The first neuro he went to more or less said it was in his head.So we went to another one she ran everything imaginable emg mri ct spinal tap etc. so she suggested we go to another one.so we go to one that is suppose to be a specialist in muscle diseases.after alot of tests he said he thought it was ALS. we were devastated then all of a sudden he turned Larry over to his partner & said he was baffled in so many words not ALS.well we have gone to ALS specialist in Chicago who was positive it was Myasthenia Gravis she wanted to do single fiber emg which she did then said not ALS & not MG.He has muscle loss, fasics,positive babinski,has to walk with cane & ride in the electric carts in stores.He takes 2-3 naps a day from exhaustion.He looks horrible .The neuro he sees said MND upper & lower but won't put a name to it yet.Larry thinks it's PLS. He also gets b12 shots every 6 wks for b12 defiency & they DO NOT help at all.The stress is horrible not knowing what is happening to your body. all of his tests come back normal. what ever he has is progressing slow & I pray that it stays that way.God Bless everyone.
Sharon
 
Hello 4mymom,
You will find a lot of support on this forum to help you and your mother through the very difficult times. I am very sorry to hear of the diagnosis, especially with no warning! I will say, talking it out, crying it out, or whatever it takes to get you through, you just got to remember to be as strong as you can for your mom. Talk when she is ready.. But for now cherish what you have. You never know what tommorow might bring... we are hoping for the cure!
Big hugs!
Kari
 
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