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tripete

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Since my diagnosis (and before when it was hinted at) I have been trying to figure out what to expect and at what time interval. It has been extremely frustrating as all I can find are VERY broad generalities due to the nature of ALS. My symptoms began as follows;

May 2013 lower pack pain (stopped me from triathloning)
July 2013 Shortness of breath and fatigue, laryngitis
August 2014 Left Hand pain and weakness
September massive amount of leg and hand fasciculations and cramps
October 2014 right hand and left lower leg pain and weakness
November 2014 Abdomen and back cramps and fasciculations
December 2014 ALS diagnosis after a year and a half of many different doctors

My ALS doc (Dr Pulley Jacksonville, Fl) seemed confused by the shortness of breath which seems to have "plateaued" in late 2013. I do have a lot of mucus with it that I have assumed to be allergy related since moving to Georgia from Pennsylvania (we will be going back to PA so my wife can have the support of her family). I have always lost me voice when I get sick, but now it seems to happen when ever I run out of breath which can happen if I carry groceries into the house. I have read that mucus is a problem with ALS. Am I seeing bulbar symptoms?

Also I show very little muscle wasting but have positive EMG signs of active and long term muscle denervation in all 5 regions, how long before muscle groups become unusable? Since my left hand problems began in August it is clumsy and can not grip well but still works.

I have almost no upper motor symptoms (some slight reflex signs) and so the doctor implied that I might have a slower "version" of ALS. He wants to see me again in three months to give me an estimated time line on how the disease might progress. But it is frustrating not knowing what is going on.

I see another doctor at Emory in GA in a few hours for a second opinion. We will ask him questions but everyone seems reluctant to give any specific information. This makes it very difficult to know how to plan for things.
 

Nikki J

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Hi
Sorry you have to be here. It is true that LMN without UMN tends to have a slower course than the mixed version.
For a timeline it is so very hard to say.
It is good that you are going to Emory. Be sure to ask all of your questions,especially about what is part of the ALS and what might be something else.
How were your breathings tests? If your breathing is affected you want to think now about whether you will want a DPS ( diaphragmatic pacemaker) there is a narrow window of opportunity after respiratory status declines. Some people who wanted it missed that window. If you might want one start asking. And know that the jury is still out about benefit. Some people report good results but the trials are still ongoing and some neuros recommend against it
 

cheerleader

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Tripete, welcome to the place we don't want you to be! We, too,hope for slow progression, but the saying here is " hope for the best and prepare for the worst!" Regarding the mucous, lots of folks here have the same problem, and it's ALS related. ( not that it couldn't be allergies!). Anyhow, my husband tried all the suggestions of the experts here, which included drinking coke, papaya enzemes, tongue scrapper, suction machine,watching dairy products. You will find much support and understanding here, along with a plethora of suggestions to make life easier. Donna
 

gooseberry

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Tripete, About your breathing....make sure you have had a full pulmonary workup. Function tests, sniff test. Emg of diaphragm, possibly mri of the chest. My husband presented with similar symptoms as yours....no two people are exactly alike except his breathing issues progressed. Please make sure you see a pulmo that deals with restrictive airway disease or knows als. They initially thought his breathing issues were allergies, asthma, etc. Then he developed pneumonia. Please pursue this avenue a little more.

After a few months of only lmn signs, his umn signs appeared. Everyone is different though and I hope you have the slower course. Steph
 

affected

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So Sorry to welcome you here tripete.

I will just add that I know it's frustrating when you want to be told what will happen, but the simple answer is that no one can tell you. ALS is the most varied onset and progression disease I've heard of. So many differences it hardly seems the same disease and yet it is.

I struggled with wanting to know this in the early months too, so I totally understand the feelings involved.
 

autumnrain

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Tripete ...My symptoms started in May 2013 with lower back pain and shortness of breath in September. I have chronic cough,excessive saliva, mucus and right limb weakness.I also have fasciculations and stiffness. I had my last emg on May which was abnormal but inconclusive. My next neuro appointment is on December 19th. Meanwhile , I am trying to get pregnant and looking forward to graduate from college in May. I don't want to stop living my life. Life is so worth living.
 

Dusty7

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Tripete, although you said, "He wants to see me again in three months to give me an estimated time line on how the disease might progress," you should not expect much precision in his WAG (wild ass guess) because that is all it is. In my mind, the 3 month checkup was just looking for UMN signs--but that is BIG. I had my 3 month, 6 month, and one year with still no UMN signs. And the longer you stay LMN Predominant, the better.

I have seen progression in LMN signs. I was diagnosed 16 months ago with no ability to stand on my toes, do calf raises, plus atrophy in my left calf. My right quad was weak and I was starting to limp. A couple months later I started using a cane. My ability to walk distances deteriorated over time and a few months ago I started using a power cart at the grocery store. Going out became more difficult and my wife just gave me a mobility scooter for my birthday. But with that, I can do Disney World with my grandkids again and go to any restaurant we choose, even if it's a long way from the parking lot.

So I am progressing, but I think it is slow, especially compared to so many others on the Forum. And I can still do basically anything I want. My neuro still can't give me much of a timeline, but I can still live my life and do what I want. How long will this stage last? No way to tell, but I feel like it may be years before I get to the power wheelchair stage. But who knows. IIWII. Live life to the fullest. Slow progression ALS does exist.

May slow progression be with you...
 

gooseberry

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When Steve was diagnosed in May 2014 he had no documented umn signs. By August , at clinic, he had several. Its different for everyone.
 

tripete

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Emory 2nd opinion concurred with Jacksonville ALS
 

cheerleader

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So sorry- the next few months will be especially hard as you digest it all. Come here for support!
 

davbo49

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it is bad you have to be here. i don't keep to much if a time line. mine started years before i when to the dr's. at this point i just said the h... with it iiwii
 

tripete

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Digesting everything is difficult. I married a wonderful woman three months ago and she is my biggest help through all this.
 

Janie H

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Welcome tripete, sorry that you have to be here. Good to know that you have a caring person there for you.

Janie
 

gooseberry

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Tripete, Since you are newly married, did you take a honeymoon? If not go! You will learn to do thimgs differently but most things can still be done with modifications. JiminVA has some great tips. I think the thread he started is Greetings Ladies and Gentlemen. It may be in the cal ssection when you are ready to see it. Try to live and enjoy your life, it is precious!
 

nebrhahe53

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welcome to the club whose admission price is life itself. So sorry you had to be here.
 
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