Hello! Another new person

[nancyintexas]

Hello!
Glad to find this forum & this is my first post.
I'm not sure when they consider it a diagnosis. In December 2013, I started noticing a limp. After about 6 months it wasn't getting better, so I started some PT. For the first 6 wks I was doing exercises for hip & back, when they thought it might be my foot. So I went 6 more wks. Not really improving so was referred to a neurologist. Had all the tests done in Oct 2014. Pretty stunned when he said he was pretty sure it was ALS, but said I would need a second opinion. I was fairly sure he was very wrong. I have had Type 1 diabetes for 35 yrs & I was pretty sure it might be neuropathy. The second neurologist was seen in Jan 2015, & wasn't willing at that point to confirm ALS. Wanted me back in April for more tests & when I met with her 4-29-15 she said it was in her opinion ALS.
So sorry for the lengthy intro, but I am wondering how long it took others in this group to be diagnosed, & how they figured their diagnosis date.
Many thanks.

 

[Nikki J]

Welcome. And sorry it turned out this way. I think your story is not uncommon. It often takes a year or even longer. First you ignore the symptom, then you go to your pcp and get sent to orthopedics or pt then a general neurologist then on to a neuromuscular specialist..I hope that is who you are seeing now?

In spite of the tentative diagnosis in October I am sure you are in shock. It does get better with time. Diagnosis date may matter for 2 things Ssdi if you are applying and clinical trials generally have a limit of how long you have it. Sometimes it is symptoms sometimes it is diagnosis. Ask your neuro what it is in your record

 

[Atsugi]

Welcome, Nancy. Sorry to see you join us.

My wife had a foot drop diagnosed as ALS in the same month, but that speedy diagnosis is rare. We asked our neuro specialist for a diagnosis letter which we used to get expeditious treatment with Soc Sec and the VA.

 

[nancyintexas]

Thanks Nikki!
You are right, it's been in the back of my head since Oct, even though I was sure it was neuropathy aka denial. Guess it takes awhile to absorb the news.

 

[swalker]

I am so sorry to welcome you here, Nancy. As you probably already know, this is a great place filled with wonderful people that can provide an amazing amount of support and help.

I can certainly relate to denial. I sure had that in the early stages. In hindsight, I think a bit of denial is helpful as you come to terms with the diagnosis.

Just be sure not to over do it. And, make sure you follow Max's rules

Steve

 

[Green Queen]

Hello Nancy. Unfortunately, welcome. I have a form of PLS but I'm here to support you on your journey as this is a wonderful place for support.
God bless, Janelle x

 

[Vincent]

I was 2 years plus before getting a definitive diagnosis. Lots of stuff to test negative for before anyone would even mention the beast which must not be named. It was long and frustrating, but it allowed me to wallow in denial a little longer.....
Vincent

 

[4tloml]

Nancy, sorry that you ended up with the ALS diagnosis. My husband went through a lengthy diagnostic phase also--first diagnosed bulbar onset by a general Neurologist, then sent to an ALS specialist who sort of "undiagnosed" him and passed him along to a movement disorder specialist, who then sent him back a year and a half later to that same ALS specialist who reluctantly diagnosed definite ALS. The entire process took 2 years. I use the original (4/2013) diagnosis date, because now we definitely know the first doctor was right. (His obvious symptoms began in 10/2012.) His final diagnosis by the ALS specialist was 11/2014.

It's important that everything else be ruled out before settling on an ALS diagnosis, and that does take time. Hope you'll read all the stickies here--we read them over and over, because it takes awhile to absorb it all and then begin designing a new way of living.

We take this journey together here. I'm glad you found us.

Cindy

 

[mpnatx]

Nancy, sorry to hear about your diagnosis. My diagnosis was relatively quick compared to most. First neurologist early August. All the tests for several months. I was able to schedule all the "rule out" tests during those four hectic months. Then my second opinion and confirmed in November with the specialist at UT Medicine in San Antonio.
You mentioned she. By any chance, did you see Dr Jackson? Very thorough and compassionate.
Very glad you came here. I've learned so much here and the support is wonderful.
You're always in our thoughts,
Marty

 

[LifeEnthusiast]

Nancy, sorry too to hear about your diagnosis. My diagnosis took about 20 months but it is PMA. I've read that is about the average time to diagnosis.

I was seeing doctors for an unrelated, and what turned out to be a relatively minor, illness. Through that illness, I was sent to a neurologist to rule out a paraneoplastic syndrome. He saw anomalies on clinical exam, ones which I didn't even know existed. My only complaint at the time was a sense of heaviness in my legs and difficult walking far and quickly. I thought I was just tired because I had been ill. Common complaints that most everyone encounters at one point or another in their life. I wasn't concerned.

Nonetheless, an EMG was done. It was simply showed chronic denervation in a few limbs. MRIs where done. Three months into the process, the heaviness was replaced by an actual loss of function in various muscles of my right leg. Another EMG was done and the results showed more widespread denervation. NCS were normal in all cases. A lumbar puncture was done and ever blood test known to man. When all tests came back normal, my neurologist told me that he suspected ALS and that time would tell. I thought that was ludicrous and tried to push it out of my mind, though I did find myself lurking here every so often seeing if anyone else had experienced was I was going through or to see if there was an alternate theory that might have been overlooked.

A third EMG about a year showed widespread denervation. Clinical exam showed more muscles weakening. But still no official diagnosis. So my neuro decided to try a six-month course of IVIG incase it was MMN without conduction block. It did cause any improvements.

Then came partial claw hand. About seven months ago, right footdrop. About four months ago, left foot drop. etc. etc. But I am lucky I do still function normally without aid. So I count my blessings. A fourth EMG was done a five weeks ago. It was worse than the lasts. And muscles clinically strong on exam are showing denervation.

Consultations between three neuros, one who is a MND specialist, and it was agreed last week that the diagnosis was PMA, as those upper motor neurons signs they had been waiting for in order for me to meet the ALS criteria never came but progression has never stopped.

I am still trying to get my head around this diagnosis. I have never been a "group" person or forum-type person, yet I decided to join here. It's only been a few days and already, I've found the support and advice here immensely soothing and extremely helpful. Sending you good thoughts.

 

[LifeEnthusiast]

"So my neuro decided to try a six-month course of IVIG incase it was MMN without conduction block. It did cause any improvements."

Should read "So my neuro.......... It DIDN'T cause any improvements."

Sorry. I don't know how to edit a post.

 

[Green Queen]

Hello LE, I am in no way an expert...I have made many typos etc but have managed to correct them before I hit the magic button and for the life of me I cannot post a pic the right way up...I reached 50 posts recently and noticed I can now edit posts, that's possibly the number of posts required for edits etc.
God bless, Janelle x

 

[hjlindley]

My weakness started in my dominant hand. We moved my ulnar nerve and things felt better for a while. Then the hand got weaker. My orthopedic surgeon sent me to the hand Center at the University of Virginia. The hand guy took one look at me and said it's your neck. The neurosurgeon looked at my neck and said yes it's a mess but I don't think I can help you. I was teaching seven hours of exercise a week both in the water and land. Eventually he got bad enough that the neurosurgeon fused my spine at the base of the cervical spine. Back to neurology at the ALS center at University of Virginia. Another EMG done by a fellow, and no results. And I continue to weaken. My husband says I'm walking funny. Still working out in the water. I'm having my routine annual physical, and my internist looked at me and said what are those twitches. She asked me when I went back to UVA and it was later that week. My CPK 3 was very high so I asked the nurse practitioner in neurosurgery what it was postop. She said it was normal, so we decided to take it again. It was elevated. Back to the ALS center, another EMG, and this time it showed ALS. That took from 2008 to 2011. Luckily the record-keeping was good and I had a probable diagnosis in 2009. So that's when my disability runs back to. Luckily I can still talk, breathe, and eat. But am in a power chair full-time and always have somebody with me. It's an disease that has to eliminate others.It can be mimicked by so many other diseases and conditions, particularly in a slow developing case like mine.
Welcome to the club no one wants to be a member of. We are all in this together.
Hollister

 

[Green Queen]

Hello Hollister. Isn't it funny (but seriously NOT funny)...I couldn't tell you by tea time what I had for breakfast or even what I've done to fill in my day if no appointments, but I can concisely tell you the course of this darn PLS.
I was 'diagnosed' in November, still waiting for final word however. Tell me, will I always remember what this has done to me, or does it go? Part of me hopes it goes. I have sooo many other things I want to remember more...like my kids growing up!
God bless, Janelle x

PS bit of a rant here. Why does EVERY doctor I see want to know the story from the beginning...can't they read? xx

 

[MaxEidswick]

>So sorry for the lengthy intro, but I am wondering how long it took others in this group to be diagnosed, & how they figured their diagnosis date.

i went to Appel's 3-day diagnosis at houston methodist

like all the others, sorry to meet you here but welcome!

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,



Max - Monday, May 04, 2015 10:08:15 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

------

> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done )