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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
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

View attachment 17183 View attachment 17182
Hi Ken,
THANK YOU for this recommendation. I didn't even think about OSU (and my son went there!) - I had heard how incredible they were (Wexner, I believe) - but didn't know that were that renown in the treatment of ALS. Do you have a name of a specific doctor at the Cleveland Clinic? The only reason I ask is that I needed to go there a few times for my son and it took a few appointments to find the right doctor. With the others, we felt like we were on a cattle call and also not being listened to. I'm 'gun shy' w/docs and their personalities. It sounds immature - but I need knowledgeable and compassionate at the same time.

Thank you, Ken!
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
116
Reason
PALS
Diagnosis
01/2018
Country
US
State
Ohio
Christine,
Welcome here! I am in Ohio as well near Canton and have my neurologist at UH in Cleveland: Dr. Bashar Katirji. He is amazing and teaches neuromuscular diseases at Case Western School of Medicine. He was my second opinion doctor and we stuck with him for so many reasons including bedside manner, compassion, access to support and ALS Clinic where we see everyone each visit including neurologist, physical/occupational therapy, speech, ALS Association Northern Ohio Chapter social worker, and even this month the PWC representative. He has a nurse whose primary job is taking care of all my needs(PALS) specifically insurance and infusion medication. He took all my tests from my previous neurologist and redid the EMG himself so that he could personally see the results. I'm glad to have completed those tests twice as it gave my husband and a piece of mind. He was also trying to rule out mimic disorders.

I highly reccomend giving his office a call. Please message me if you have any further questions.

Cathy
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
116
Reason
PALS
Diagnosis
01/2018
Country
US
State
Ohio
Christine,
I forgot to mention that my husband grew up in Westlake. His family is still in the area of Avon and Sheffield Lake. I grew up in Geauga County- on the east side. We travel to the Cleveland area as often as possible for visits.
Cathy :)
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Christine,
Welcome here! I am in Ohio as well near Canton and have my neurologist at UH in Cleveland: Dr. Bashar Katirji. He is amazing and teaches neuromuscular diseases at Case Western School of Medicine. He was my second opinion doctor and we stuck with him for so many reasons including bedside manner, compassion, access to support and ALS Clinic where we see everyone each visit including neurologist, physical/occupational therapy, speech, ALS Association Northern Ohio Chapter social worker, and even this month the PWC representative. He has a nurse whose primary job is taking care of all my needs(PALS) specifically insurance and infusion medication. He took all my tests from my previous neurologist and redid the EMG himself so that he could personally see the results. I'm glad to have completed those tests twice as it gave my husband and a piece of mind. He was also trying to rule out mimic disorders.

I highly reccomend giving his office a call. Please message me if you have any further questions.

Cathy
Thank you so much Cathy I always like being given specific names from someone who has had that experience themselves. Thank you so much and enjoy the rest of your weekend!
 

Ken15

Active member
Joined
Jan 9, 2018
Messages
30
Reason
CALS
Diagnosis
09/2017
Country
US
State
South Carolina
Do you have a name of a specific doctor at the Cleveland Clinic?
Christine,

Sorry, I do not. When you posted your location, I tried to find an ALS facility within your proximity. Also, I knew about OSU because my PALS was examined by Dr Rothstein (2nd opinion) at Johns Hopkins and she enrolled/donated a blood sample in the Answer ALS Project at his request.

Looks like you got some good feedback here . . . good luck.

Ken
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
I really do! Everyone here is awesome and so willing to help!

~Christine
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
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.
Kim,
WOAH! It sounds like you have been through a lot! I'm sorry for all that you have been through - and yet you sound very positive! That already says a lot about you. I really like how each time you 'got back up on the horse' and still tried to do what you once could do and get back to 'you'. I'm uncoordinated as things have progressed and believe it or not - too 'afraid' to even try. My eye/hand coordination is off and can't really run any more. At the most, my best friend and I go for walks in the park here and when I feel good, I feel good! That's why I wonder if it is ALS - along with me still 'being here' after 4 years, I'm able to go for walks from time to time. Almost like it 'comes and goes' - and I don't think ALS is supposed to be that way.
After my seizures, I feel like I have lost IQ points as well. I have an appointment this week with that neuro to talk about that. Someone I was talking to was mentioning 'frontal/temporal damage'. My best friend has also mentioned a difference in my ability to recall and reason. I am definitely a different person. I also have depression and anxiety. I reached out to my PCP for a recommendation to help with those. I have sat and logically tried to think about 'what do I have to be anxious about'? (I mean, I know they state I have ALS, etc.), but that's not it. I have anxiety and depression that I really think is a possible chemical imbalance. I need to change that up - FAST!

Kim - I admire your perseverance and your positive attitude with all you have been through. Keep in touch - and let me know how things are going with you! I'll do the same!

Thank you for sharing your journey with me! You showed me that I have to KEEP GOING!

~Christine
 

Chuckdobro

Member
Joined
Apr 29, 2019
Messages
22
Reason
PALS
Diagnosis
02/2019
Country
US
State
Ohio
I was first diagnosed by Dr. Pioro at the Cleveland Clinic. I had a second opinion by Dr. Martinez-Thompson at the Mayo Clinic in Rochester Minnesota. Both excellent neuros.
 

KimT

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

I think I should take some time to speak of depression. My mother and her four siblings all had bi-polar disease. Two of them committed suicide and two spent some serious time in mental institutions. My mother never took anything for it but she suffered a great deal. She was a genius, an artist, but had a very dark side. That's the background.

In my 30s I started having spontaneous panic attacks. They came from nowhere. My neurologist, who was treating me for migraines at the time, put me on Xanax. Never had another one.

Fast forward to about 10 years later and I felt tired. After going to Mayo and being misdiagnosed, I was diagnosed with severe clinical depression. It zapped my energy, made me introverted (you'd have to know me to appreciate the extreme change) and gave me many physical symptoms. Eventually, I responded to Remeron and it changed my life. Looking back I can see that I had depression off and on for years but just thought that was the way everyone felt. I didn't even connect it to my mother because her case was so extreme, she would be up for days and then crash and cry for weeks. We lived in a very small village and our ONLY doctor told her she was "down" because she should have gone to Hollywood "with her looks." Seriously. He was the same doctor that diagnosed a piece of fuzz on my SIL's foot as a plantar's wart! 😂

Anyway, the only point I'm trying to make in letting these skeletons out of my closet is that you can have other things in addition to ALS. For the record, my 20s and 30s were great and I got to travel a lot and really packed much enjoyment into my life.

I think some of us do have days when we can do more and it feels like we are getting better. Two days ago I climbed a ladder and lifted down some boxes. Today, no way can I climb a ladder. I'm too unsteady and not strong enough to lift down those boxes.

Yes, keep going, WITHIN REASON. Don't do things that risk falls (like I do.) A measure of fear can be good.
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Thank you so much Cathy I always like being given specific names from someone who has had that experience themselves. Thank you so much and enjoy the rest of your weekend!
Hi, Cathy!
I hope this finds you doing well - if I am unable to get into Dr. Katirji in a timely manner - have you heard anything about about Dr. Salwani? Also at UH.
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Christine,
Welcome here! I am in Ohio as well near Canton and have my neurologist at UH in Cleveland: Dr. Bashar Katirji. He is amazing and teaches neuromuscular diseases at Case Western School of Medicine. He was my second opinion doctor and we stuck with him for so many reasons including bedside manner, compassion, access to support and ALS Clinic where we see everyone each visit including neurologist, physical/occupational therapy, speech, ALS Association Northern Ohio Chapter social worker, and even this month the PWC representative. He has a nurse whose primary job is taking care of all my needs(PALS) specifically insurance and infusion medication. He took all my tests from my previous neurologist and redid the EMG himself so that he could personally see the results. I'm glad to have completed those tests twice as it gave my husband and a piece of mind. He was also trying to rule out mimic disorders.

I highly reccomend giving his office a call. Please message me if you have any further questions.

Cathy
Hey, Cathy - it's me again. Sorry . I meant to ask you - how far along or severe were your symptoms when you saw Dr. Kitirji and from that point when you were diagnosed until now - how fast and in what ways have they advanced? (As always - if I'm being too personal - PLEASE tell me and I won't go there in the future.)

Thank you!
~Christine
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
116
Reason
PALS
Diagnosis
01/2018
Country
US
State
Ohio
Christine,
I probably had mild hand symptoms and loss of strength for about two/two 1/2 years prior to diagnosis in January of 2018 but had more severe breathing and walking/stair climbing symptoms for about 9 months prior to diagnosis. I started with Dr. Katirgi a few weeks after my diagnosis as a second opinion which was encouraged by my first neurologist.

Since starting Riluzole and Radicava, my symptoms have progressed but not overly fast. My doctor is pleased with my "lack of progression". I feel much less able to do things independently and can't climb stairs at all. My first nero said I wouldn't be working or walking within 6 months...still walking (not far or well) and just retired (with assistance at work).

Many can tell their story with even slower progression and some, sadly, with much faster. Each person is different overall, although similar tracks. When others have discussed their symptoms of progression, I know it will eventually happen to me - and so far it has been correct.

I hope you get yourself a second opinion and a clinic to assist you with your needs.
Hope this information helps!

Cathy
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
116
Reason
PALS
Diagnosis
01/2018
Country
US
State
Ohio
Christine,
I just saw the first post-Sorry!
No, I have not heard of Dr. Salwani.
Cathy
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
30
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Christine,
I probably had mild hand symptoms and loss of strength for about two/two 1/2 years prior to diagnosis in January of 2018 but had more severe breathing and walking/stair climbing symptoms for about 9 months prior to diagnosis. I started with Dr. Katirgi a few weeks after my diagnosis as a second opinion which was encouraged by my first neurologist.

Since starting Riluzole and Radicava, my symptoms have progressed but not overly fast. My doctor is pleased with my "lack of progression". I feel much less able to do things independently and can't climb stairs at all. My first nero said I wouldn't be working or walking within 6 months...still walking (not far or well) and just retired (with assistance at work).

Many can tell their story with even slower progression and some, sadly, with much faster. Each person is different overall, although similar tracks. When others have discussed their symptoms of progression, I know it will eventually happen to me - and so far it has been correct.

I hope you get yourself a second opinion and a clinic to assist you with your needs.
Hope this information helps!

Cathy
Thank you, Cathy!

I'm going to try to get in.

When you stated you had severe breathing problems - are you talking about lung expansion or more throat? I find my throat closing up on me and when I 'cheat' and have something like crackers, the back of my tongue feels 'crampy' or 'lazy'. I also have a gunky cough when I am 'active' - like trying to go for a walk. I'm so sorry for so many questions - and I will ask once I get my appointment - but am just curious before I get in. I do know that my neuro stated he has never seen 2 people follow the same path.

I am also excited for your 'lack of progression' or it being slow and that the meds seem to be slowing your progression.

Thank you for your time, input and advice. I WILL make that appointment for a follow up. I just got back from my appointment with my neuro who is the doc for my seizures. I have been having bad memory/cognitive issues and now I have a few things I need to go thru with him to rule out dimentia/something in my blood/mimic/etc. Not going to lie - it makes me nervous, but only because I have had a few doctors who haven't been that great. I feel like I have a good 'circle' of docs now - and don't want to branch out. I'm 52 years old! GROW UP! Right? I'm going to put on my big girl pants and go. And if I don't like them, I don't have to continue with them. I keep forgetting that it is my choice.

Again, thank you, Cathy. I will keep you in my thoughts and reach out if you feel like 'talking'.

~Christine
 

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
Hey, Laurie!

I was wondering if you had time to look over my test results and what you thought. I wasn't certain if you were familiar with how they are interpreted? If not - no worries!

Thanks!
~Christine
 
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