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Diagnosed almost 4 years ago, and have questions (first time poster) :-)

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Hello, everyone!

First, while I'm not thrilled that I was diagnosed with ALS - I'm glad to be part of such a compassionate, honest and helpful forum. Thank you in advance. This is the first time that I have done something like this - so if my etiquette is incorrect, PLEASE let me know!

Ok, so here are some things that I have gone through and some questions I have. I am almost 4 years after diagnosis. I was 48 years old when I was diagnosed. I noticed prior going to my neurologist, I was having problems. I was ALWAYS a 'go, go, go' person. Single mom with two children, volunteer for many groups/activities; and at times I would have two jobs.

I noticed that instead of taking an hour and a half to cut the grass, I would need to spread it over two days. The same with 'cleaning day' - I would need to sit down quite a bit as I would get tired very quickly and I noticed my thigh muscles hurting (the best way to describe that feeling was almost like a burning feeling). Then I started to lose weight rapidly. It was close to 40 pounds and I wasn't dieting.

I was falling here and there. One fall sent me to the ER because I couldn't bring my arms up fast enough to catch myself and all of my weight went onto my left shoulder. And I'm not one to go to doctors, let alone to the ER for myself. I had always been in very good health. I also started to notice food getting 'stuck' in my throat. I chalked it up to me scarfing food down too fast - but I felt it was happening too often, so I paid attention to it.

My fingers would also tremor. It was noticeable to others when I would text or something like that. I almost felt like saying 'I swear, I'm not drunk!' I had muscle wasting in one calf more that the other, and my collar bones were beginning to stick out. Fasiculations? Ummmmmm, YESSSSSS. Although, I didn't know what they were at the time.

My fatigue was not like me at all. I spoke to my PCP, and she started sending me out for blood work, MRI's, CT scans, etc. All came back normal. Then she sent me to a neurologist. My NCS was all good. Then came the EMG - I had 'static' on the machine when the needle was inserted and I didn't move at all, and didn't do what it should have done when I was asked to move my limbs. This included the areas in my back as well. I also had hyperreflexia. That day, he had done 3 out of my 4 limbs.

That evening I got a phone call asking me to come in for another NCS and EMG on the arm that wasn't done. After all was said and done I was told (for the second day in a row) that I had ALS. I really didn't know everything about this disease, so when I went home I looked it up and was in total shock.

Oh, prior to going to my PCP, I noticed that after I ate, I felt like something was pushing up against my diaphragm. After changing my diet around, I was sent to a gastro doc. I had an endoscopy where he noticed that even though the last time I ate, there was still quite a bit of food still sitting in my stomach. I did the 'emptying' test and when my doctor gave me the results; after extrapolating it out - it would have been approximately 9.5 hours before the scrambled eggs in my stomach were to have digested and move along. I tried the diet he gave me and the meds he gave me. But the meds were for short term usage only and neither suggestion worked.

SO, after the ALS diagnosis, it was suggested I have a J tube put in and gained some weight back. Several months after, I was hospitalized for another reason and it was discovered that my bladder wasn't 'working' (which I noticed that my body seemed to look like a water balloon and I had mentioned it for months before). A urologist came in and asked for me to be cathed. Well, let me tell you - immediately 1200 ml of urine came out to where my bag needed to be emptied right away and another one attached. After trying several things, it was determined that I needed to have a permanent catheter put directly into my bladder in order to urinate properly. I wear a bladder bag during the day and at night. Once I got used to it, I was grateful to have it.

(Earlier, based upon my complaints of water retention, I was prescribed lasix which only seemed to work 'sometimes' and not as well as I had hoped. So I am now off Lasix because of this wonderful catheter.

Okay - so since I was diagnosed, I was told to 'listen to my body and get a lot of rest' so as to save my energy to try to be able to do things I want to do. I also went to PT. My body definite looks nothing like the athlete I once was. BUT, after surfing the internet, I don't feel like I lost as much strength in my limbs as I read in 'what to expect'. I can still drive, I use a cane for stability and am not yet comfortable using my walker in public. The 'meat' on my hips is not there and my upper body (collar bones, shoulders) definitely look atrophied. I still have the fasiculations and I'm not as strong as I used to be - but I don't use a wheelchair.

I'm still able to tie my shoes, button my pants, etc. One of my questions is this: after being 4 years into this - shouldn't I be worse? I know, absolutely, that I should be grateful; but it is messing with my head. 'Maybe I don't have it' based on other cases I have read.

Recently I have started coughing. Sometimes a productive cough, sometimes it sounds like something is 'stuck' in my throat, but there isn't. When I went for a short walk with a friend, when we were almost done, I REALLY felt like my esophagus(?) was collapsing/closing up and I needed to really try to manipulate my muscles in my throat to catch my breath. Sometimes I wake up confused as to where I am (NOT every night, though!) and I think my kids are little again and living at home with me. Then once I move around - I come back to reality. (during all of this, I also started having Grand Mal seizures and am on medication for it.)

Over the last several months, my memory seems to be quite bad to where I can't remember seeing either an entire movie or parts of them. I also can't find the words I'm looking for as easily anymore.

Can anyone tell me with the 2 EMGs I had, yet I don't feel like I've lost a LOT of strength (yes, some) but not as much or as fast as a lot of articles read suggested I should and also looking at blogs.

I thank you all - and I'm sorry this is soooooo long. This will be the last long one, I promise. I just wanted to get it all out there, to give you enough information, to let me know what you think. Lastly, I have the results of my EMG should you want/need specifics.

Again, my thanks to you all!
~Christine
 
Last edited by a moderator:

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
This is ChristineRK again,
I'm sorry, I left one question out -- is the weakness and atrophy I have due to the ALS -or- is it because I don't run/cut grass/lift weights anymore. (I have flying squirrel arms, and my once thick thighs are not! Lack of activity or ALS or age (I am now 52). I feel as though the definition my muscles used to have is no longer there - but because I was once athletic and pretty muscular, people looking at me for the first time might not know how much I lost. I guess I'm asking is it possible to have 2 EMGs come back positive or is it because I'm more sedentary? I mean almost 4 years! Yeah! (But it is playing with my head......)
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,355
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Hi Christine,

Feel free to post the EMG after deleting/obscuring any identifying information.

We recommend a second opinion for any life-changing diagnosis. If you did not have one, it's not too late. They would probably want to do another EMG if it has been four years.

Here is a map of clinics you can call for a second opinion.

Coughing, being confused when you wake up, memory loss, and feeling like your airway is closing up suggest that you might be developing a breathing problem. So if you go for a second opinion, you should have breathing tests as part of it, and if there is a wait for your appointment, you might want to get the breathing tests sooner, like at the clinic that diagnosed you. You might need to start using a BiPAP machine at least at night.

If you need breathing support and don't get it, especially with a seizure risk, bad things could happen. So please look into that.

Some people who have ALS do progress more slowly, so it's not impossible that you have it, but certainly something good to verify, especially to rule out the idea that you have something more treatable.

Best,
Laurie
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,391
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Who is following you now for all this? Did you ever see a neuromuscular specialist/ go to an ALS clinic?

A fair number of us question our diagnosis at some point. This is particularly common if you progress slowly.

Some of the things you have described don’t sound typical of ALS so a second neuromuscular opinion as Laurie suggested seems like something that is worth getting if you haven’t had one.

And yes breathing needs to be checked
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Hi Laurie,

Thank you for your response and suggestions. I made an appointment just this morninng with the neuros office that diagnosed me and am going to ask for a recommendation as to where to go for a second opinion and discuss more of what is on my mind and going on in my body (or not going on in my body). I feel like lately (well, the entire time, but much more as of late) I have been 'in my head' too much - so it makes sense to just go in and ask someone else their professional opinion and get another EMG.

I have attached the two that I had when I was originally diagnosed. Let me know what you think.

I asked what my sister thought and she stated that with the decline she has seen over time, she believes I have it (or in her exact words 'you straight up have it' and that she feels it is just a slow progression. She also reminded me of my fathers friend (my father has passed or I would ask him directly) whose niece has it and she is 10+ years in. I guess with all I've read and looked into, I thought I would be in a different place. PLEASE don't get me wrong - if I am a slow progressor, I'LL TAKE IT! If I don't have it, I'LL TAKE IT. I think because I can feel things (fasiculations, etc.) going on in my body along with the feeding tube, catheter, seizures, what seems like all of the time, I think about this waaaaaay too much. Also, if I have something that is more treatable (for example; dealing with what has popped up with me one thing at a time) that would be great news as well. I want to get out of my head and enjoy what is out there waiting for me.

Thank you for your help and advice. I will keep you posted as I go along!

~Christine
 

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ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Who is following you now for all this? Did you ever see a neuromuscular specialist/ go to an ALS clinic?

A fair number of us question our diagnosis at some point. This is particularly common if you progress slowly.

Some of the things you have described don’t sound typical of ALS so a second neuromuscular opinion as Laurie suggested seems like something that is worth getting if you haven’t had one.

And yes breathing needs to be checked
Hi Nikki,

I didn't mean to leave you out of my response - so I should have addressed that to both Laurie and you. My apologies.

I have not gone to a ALS clinic - I'm someone who is not a huge fan of doctors (silly, right?). I have had bad experiences in the past with both myself and my children. Now, there have been MANY great ones along the way - but the 'bad ones' have stuck out in my mind, so I'm not eager to just jump in there. I have been going to the Neuros office that originally diagnosed me along with my PCP (all great people there!) and a seperate neurologist for my seizures (I have an appointment with him this week, actually), and a urologist. I have not yet gone to an ALS clinic, but I know I should and that is where the referral from my neurologists office will come from. As things either crop up or stop working, I go to my neurologist and he recommended the doctor I should go to for the feeding tube placement as well as the nutritionist. The urologist I am seeing is the one who treated me in the ER/hospital after my second seizure. He also did the surgery for the placement of the catheter into my bladder. I see him every 4 weeks to have my tube changed out. So, basically, I'm seeing my diagnosing neuro and his staff and then the people they recommend as things come up (as well as my PCP to address any other issues).

Thank you for your input, Nikki! I will be posting more as I continue to make appointments and when I get my second opinion.

Enjoy your weekend as well!

~Christine
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,391
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
No worries!😀

If you care to share your general location you may find members here with experience of the clinic or clinics in your area. I am extremely fortunate in my clinic and doctor. I have met quite a few ALS specialists in research studies and find them generally to be a very kind and compassionate group. I think it takes a special person to pick the field
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Thank you, Nikki!

I live in Westlake, Ohio. It is a suburb of Cleveland. I prefer UH if that is possible. If anyone has any suggestions - please let me know! I was just reading some reviews about doctors I don't know. They range from 1/5 - 5/5 for the same doctor. I would really like a recommendation from someone who has had personal experience with a good clinic and doctor. A doctor that is willing to listen to what the patient has to say and is compassionate. If they are 'barking' - I don't respond well to that. And, of course, competent and capable.

Thank you again!
~Christine
 

pittsburghgal

Distinguished member
Joined
Jan 7, 2016
Messages
484
Reason
CALS
Diagnosis
11/2011
Country
US
State
PA
Hi, Christine, and welcome.

Some people with ALS do have very slow progression, as Laurie said. My husband had fatigue and left hand weakness with no progression for over 2 years. He first saw a general neurologist in 2011 who raised the possibility of ALS. We then went to an ALS specialist who told us that it was NOT ALS. We saw this neurologist every 6 months for 2 years and there was no progression but then he started to have right hand weakness and hyper reflexes and was finally diagnosed with ALS in 2013.

Sharon
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Hi, Christine, and welcome.

Some people with ALS do have very slow progression, as Laurie said. My husband had fatigue and left hand weakness with no progression for over 2 years. He first saw a general neurologist in 2011 who raised the possibility of ALS. We then went to an ALS specialist who told us that it was NOT ALS. We saw this neurologist every 6 months for 2 years and there was no progression but then he started to have right hand weakness and hyper reflexes and was finally diagnosed with ALS in 2013.

Sharon
Thank you for replying, Sharon.

Once you went to the specialist and s/he told you and your husband it was not ALS, did you keep going back because you felt something was, indeed, wrong? Or did the specialist want to keep an eye on him?

Do you mind if I ask how your husband is doing now? If it is too personal, I apologize for the question.

I hope you have a wonderful weekend!

-Christine
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Sharon,

Being new to a forum - please let me know if asking personal questions like that is not proper. If so - my sincerest of apologies - truly.

~Christine
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
590
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
Hi Christine, welcome! I agree with others that it'd be a good idea to get a 2nd opinion with an ALS specialist. Glad you found the forum!
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Hi Kristina!
I am, too!

Thanks so much !
~Christine
 

Ken15

Active member
Joined
Jan 9, 2018
Messages
30
Reason
CALS
Diagnosis
09/2017
Country
US
State
South Carolina
I will be posting more as I continue to make appointments and when I get my second opinion.
Christine,

Recommend an "independent" 2nd opinion; two to consider are the Cleveland Clinic and, a bit farther away, OSU Medical Center. The Cleveland Clinic is an ALS Association Certified Center and OSU is also a site for the Answer ALS Project [Answer ALS - Answer ALS]

Good luck,
Ken

ClevelandClinic.PNG OSU.PNG
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,247
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Hi Christine,

ALS is a strange beast. Some of us started out with atypical symptoms and others, more commonly, developed foot drop or slurring their words.

I will say that other "issues" come along with ALS and you can have things going on that are unrelated to the disease but makes life a whole lot harder.

I was diagnosed with Meniere's disease years ago. I had all the symptoms except hearing loss. I went to specialists in Florida and they all kept telling me the same thing. Eventually, I went to University of Pittsburgh Balance Center where a world-famous "dizziness" specialist ran me through two full days of testing. The results came out cervicogenic vertigo, migraine associated vertigo, and a dislocated TMJ. Both vestibular nerves were compromised. I still have all the symptoms but there is really no cure so I medically manage most of it. I've also had bladder issues and an anal fissure secondary to constipation.

I'll tell you my story because I'm classified as slow progression, too. In 2012 I sprained my left ankle just standing up. Now prior to that I was a runner, played golf, soccer, basketball, scuba, and biked. I was a gym rat, extremely muscular and at 5'6" I never weighed over 110 pounds. I had to eat lots of calories just to maintain weight because my metabolism was fast. So my ankle healed and I was back running, not as far and not as fast. In 2013 I fell running and didn't break my fall. Suffered a traumatic brain injury and had to do a lot of cognitive rehab because I lost 60 IQ points. During the rehab, the did extensive testing and found that my left hand had moderate to severe motor skill reduction. I played piano so I already knew this but didn't put it together with the fall. I also started to have trouble getting change out of my wallet and I dropped things more. In 2014 I developed cramps and twitches in my left leg and foot. By then my local neuro decided to give me a thorough physical exam, lots of blood work, and do an EMG. After everything came back he referred me to Mayo. I waited about 6 months, then made an appointment. Mayo did a clinical exam and I was still very strong but I knew I was nowhere as strong as before nor did my body look like it did before. When they did the EMG they changed their tune and said possible ALS. I already had brisk reflexes and some other signs like atrophy in my left arm, hand and shoulder but this going back and forth finally led to a diagnosis in 2015. I got a second at Johns Hopkins. Still not believing it I went to two more ALS specialists.

Just thought hearing another story might help.

That said, I would definitely get to a specialist for a new EMG, second opinion. Two other tests that, I believe are necessary, are a comprehensive pulmonary function study (including breathing muscle strength) and probably a swallow test.

Meanwhile, don't fall. I did and it really hurt my ability to take long walks. At the time of my fall (2016) I was still walking one or two miles a day. after the fall ( I twisted my GOOD ankle carrying four bags of groceries and didn't see the curb) I had to hop around on my bad leg and my back suffered. It took a good six months until I could walk 1/2 mile again. Now I can walk about 1/4 mile on a good day. I think the fall in 2016 made me progress faster.
 
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