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Micheline

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Joined
Sep 23, 2008
Messages
80
Reason
PALS
Diagnosis
11/2008
Country
CA
State
British Columbia
City
Campbell River
Hello,
I’m new here and had my last EMG and Muscle Biopsy with my 2nd Neuromuscular Neurologist appointment on Monday.
A bit of history first; Married with 2 teenagers.
- Nov.2007, I was having trouble going upstairs, getting up from a sitting position, and getting out of bed.
- tripping over my feet, my gait was changing, walking was slower.
- was sent to emergency, for x-rays and ct. Both came back normal. Dr. on duty asked me to stand on one leg and bend it (fell like a ton of bricks). Referred to Neurologist.
- December, EMG, NCV…showed changes in both another one book for January, 2008.
- In-between appointments; blood work- everything imaginable. Now walking with a cane.
- January EMG & NCV…noticeable changes from month previous. Appointments for LP, MRI’s, and CAT scan. More blood work. Fell and sprained my ankle twice – walking with crutches. Walking up steps almost impossible without help.
- Febuary, I had to leave work unable to fly due to limited walking. CAT scans, MRI, and LP (normal)
- March, Incontinence, started using walker & wheelchair, unable to drive, unable to walk up and down stairs(now have to go down on my butt), When I fall I have to crawl to the lowest chair in the house, unable to get up without help.
- June, EMG & NCV still getting worse. Unable to walk long distance without fatigue and weakness(take 5-7 steps have to rest, and unable to lift legs towards chest they feel like cement) Informed GP of Incontinence (make schedule trips to washroom…ha ha). No reflexes from my knees down. Saw Neurologist, possible GBS-CDIP but unsure. Asked if I could get second opinion. Referred to Neuromuscular Neurologist.
- August, sent to Neuromuscular Neurologist, EMG, NCV, no response from knees to ankles even on max. EMG still getting worse, now showing weakness in my back, some weakness in my neck and shoulders. Muscle fasting in my thighs. She referred to her colleague for another EMG and muscle biopsy. Did treatment of IVIG, 50/50 chance of working, Neurologist is doubtful “but why not try”!
- Monday September 22 ruled out GBS-CDIP, asked what it could be…I quote “maybe a variant of Lou Gehrig’s” biopsy will take two weeks, MRI on October 31st. Maybe doing another LP.

As of to date; I need help getting off the toilet, muscle twitching in legs, abdomen, once in awhile in my arms. Pins and needles if I stand to long or sit to long. For the last couple of weeks I have had cramps in my thumbs. My husband and I have asked about everything when we go see the doctors. And have looked up everything they tell us. He has been my rock.

I am not sure where we go from here. If it comes up that I don’t have this, I don’t know what else it could be. Any responses, ideas, questions would be grateful.
 

laurel

Very helpful member
Joined
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DX UMND/PLS
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07/2007
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When you had the IVIG, did you have the recommended loading dose of 2 Grams per kilo of your weight? The appears to be critical when assessing whether you are responsive to the IVIG. It seems some neurologists who have done a trial of IVIG on their patients, and they have not given the recommended loading dose and instead prescribe 1 Gram per kilo of weight. If that is the case, the trial of IVIG could not be properly assessed as working or not. Lots of info. on this on the GBS/CIDP forum. Not all CIDP patients have elevated protein in their LP's. Has GBS been ruled out?
Laurel
 

planningguy

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Micheline,

It sounds like you've been through the wringer, but it also sounds like your doctors have been very thorough as well. Have you been to a clinic that specializes in ALS yet ?(I do see that you mentioned a neuromuscular neurologist).

We have some regular posters that have medical experience (Wright in particular). They might be able to to answer some questions and provide some insight. I wish you the best of luck, and welcome to the forum.

Robert
 

crystalkk

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pennsylvania
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micheline,

I am sorry for what you are going through it is very frustrating...There are many on here with no answers
and continuing to decline.

Do you have a copy of your emg/nvc report that you can post on here, the results of the emg would give more info.

Did they just try the Ivig treatment once?

Did the weakness in the begining come on suddenly or was it gradual?

Hang in there,
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
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PALS
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05/2008
Country
US
State
California
City
Los Angeles
Hi, Michilene,

I don't know anything about medicine except as a patient, but when you mention your serious falls, that suggests to me Progressive Supranuclear Palsy. The only reason I know anything about that is because I was diagnosed with PSP before ALS. It is more related to Parkinson's than ALS, but there are overlapping symptoms with ALS.

This is from the University of California at San Francisco web site:

Introduction [to PSP]
Steele, Richardson and Olszewski first described this disease as a distinct clinicopathologic entity in 1964, and established the triad of clinical features still used for diagnosis:

Progressive difficulty with gait and balance resulting in frequent falls
Progressive loss of voluntary control of eye movements
Dementia


The second leading cause of death for PSP patients are fractures from falling. (Pneumonia is first.) This is a very rare condition. Have you had any vision problems? It is especially hard for PSP patients to look down, which contributes to falling as they can't see where they are going. A common symptom is double vision in reading (or seeing anything up close). Also, have you had any changes in mood or behavior?

I understand that you don't need to have all three symptoms for a diagnosed. It is not cureable, but has a much longer life-expectancy than ALS, and is sometimes treated with Parkinson drugs.

At least it is something to consider, because the frequent falls are quite dangerous, and should be watched very closely.

Hope you get an answer soon,
BethU
 

Micheline

Active member
Joined
Sep 23, 2008
Messages
80
Reason
PALS
Diagnosis
11/2008
Country
CA
State
British Columbia
City
Campbell River
I did get the 2 gram kilo. The Neuro. that wanted to try it wasn't very positive that is would work, it was a 50-50 chance and I have nothing to lose.
 

Micheline

Active member
Joined
Sep 23, 2008
Messages
80
Reason
PALS
Diagnosis
11/2008
Country
CA
State
British Columbia
City
Campbell River
I am seeing a ALS speacialist, she is the one that did my biopsy(I did not know until I came home and researched her name and found out that way). She is a wonderful lady. Both of my new Neurologists are. She did say it was a symetrical(sp).

The IVIG treatment was once. I am not sure if the weakness would be considered slow or fast. My first Neurologist says it has come on fast. All I know is it has been almost 1 year in November since I was living and walking in a normal life.
All my neurologists have asked me about my breathing, swallowing and vision. Never thought anything about it, I never had those signs.
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Diagnosing

I am seeing a ALS speacialist, she is the one that did my biopsy(I did not know until I came home and researched her name and found out that way). She is a wonderful lady. Both of my new Neurologists are. She did say it was a symetrical(sp).

The IVIG treatment was once. I am not sure if the weakness would be considered slow or fast. My first Neurologist says it has come on fast. All I know is it has been almost 1 year in November since I was living and walking in a normal life.
All my neurologists have asked me about my breathing, swallowing and vision. Never thought anything about it, I never had those signs.
Hi Micheline. Did you have any positive response from the IVIG? I am assuming not as you didn't mention that you did. You sure are having a rough time. I was hoping that it might be something in the CIDP family of variants. Since you had a negative LP, they must have ruled out MS as well. Take care and let us know what is happening, and perhaps others will jump in with their thoughts.
Laurel
 

Zaphoon

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08/2011
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Missouri
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Springfield
Micheline,

I think the rate of your progression is not only remarkable but down right disconcerting! I hope the docs are able to come to an accurage diagnosed for you soon so treatment and relief can come your way.

Zaphoon
 

SteveS

Active member
Joined
Sep 23, 2008
Messages
98
Reason
Loved one DX
Diagnosis
11/2008
Country
CA
State
BC
City
Campbell River
Hi,
I am Micheline's husband Steve. Seems her only positive reaction to the IVIG was swelling in her left leg and foot was reduced only for a few days post treatment. I have started a diary of sorts to track her symptoms and condition. The Dr we are currently seeing is the ALS specialist for Vancouver General Hospital (Vancouver BC). When she told us what she thought Mich was suffering from (ALS) it hit me like a ton of bricks since I knew someone once that had this disease. I have noticed that her symptoms have slowed the last few months compared to the rapid decline in the first few months when all of this started. We are walking on pins and needles waiting for the results of her muscle biopsy which we wont get for at least another week. We have had 3 or 4 diagnosis's from last Nov till now and they have proven to be wrong. We are hoping and praying that this turns out be another one.
 

SteveS

Active member
Joined
Sep 23, 2008
Messages
98
Reason
Loved one DX
Diagnosis
11/2008
Country
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BC
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Did they just try the Ivig treatment once?

Did the weakness in the beginning come on suddenly or was it gradual?

Hang in there,

So far they decided to just try the IVIG once. It was 3 weeks prior to her last EMG. They felt that even if Micheline couldn't feel the difference they could see the results in her EMG. Obviously by the results it had no affect. She has no reflex response in knees and down. As far as her weakness from the time she started to complain to me about it till it was visibly noticeable was only a few weeks. Every month brings a new set of challenges. Luckily upper body strength is good at this point other than her new cramping in her thumbs and soreness from having to exert herself to get up from sitting with my help.
 

Micheline

Active member
Joined
Sep 23, 2008
Messages
80
Reason
PALS
Diagnosis
11/2008
Country
CA
State
British Columbia
City
Campbell River
My EMG Results...
Extensor Digitorum Brevis: Fibs=3+,+wave= 3+, MUAP= abent, Pattern=absent, Effort=none
Tibialis Anterior: Fibs=2+, +Wave=2+, MUAP=norm, Pattern=reduced, effort=full
Gastrocnemius Medial Head: Fibs=1+, =Waves 2+, MUAP=Norm, Pattern=reduced, Effort=moderate (all the other spaces are normal, or blank on my EMG)

I am not sure what the Motor Nerve Conduction? Let me know
The "Interpretation and Conclusion" is as follows...mixed acute demyelinating and axonal degenerating motor neuropathy. In a nut shell, he was not sure what was wrong.

I did called my New Neuro. for the results of my biopsy. Not in yet...Does anyone know why the biopsy, what they are looking for? What they are ruling out? I am stuck in limbo for a year!
 

planningguy

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Micheline,

Hopefully you will get some more information on your EMG findings.

As far as the biopsy is concerned, although I don't know all of the different things that can be revealed during a biopsy, it is often used to try to pinpont the reason behind muscle weakness. Muscle biospsies can help doctors discover if the problem is a myopathy (problem with the muscle tissue) or neuropathy (problem with the nervous system communicating with the muscle).

Take care,

Robert
 

livenowgrievelater

New member
Joined
Oct 8, 2008
Messages
3
Reason
PALS
Diagnosis
10/2008
Country
US
State
TX
City
Coppell
Help

Hi:

My mom was just diagnosed with ALS and we are coping now. It is not easy and I feel for any and all that have had to deal with this disease. God Bless all of you.

My current question resolves around disability. Her doctor told her she was eligable for disability right now and should go on it. That said, she is working and has good insurance. I do not know or understand what the process is for this side of things. My mom is not a wealthy person. She and dad are lower middle class with no retirement funds other the Social Security.

She is still working today and that keeps her salary at the highest she will ever see.

So what are we looking at? Does she need to go on disability now? Does that effect her insurance? I was thinking that she would keep her insurance and also get disability thus offsetting any major financial burden to her and the family. I just do not know.

Any help on this would be greatly appreciated.

Thanks and God Bless
 

rose

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Joined
Mar 29, 2008
Messages
2,879
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DX MND
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Maryland
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Anytown
livenowgrievelater

I can't give you a full answer, but from my perspective, I sabotaged myself financially by working less and less (and less!) rather than jut going out on disability. This is not in reference to Social Security though, but the long term disability I purchased through my benefits package at work. My plan will pay 60% of my last 12 months income startng at 5 months after leaving work.

My last year at work, however, I worked very little, just enough to stay on the active list as an employee (flight attendant) and had run out of sick time long before. I don't think the difference of a year one way or the other would have made that much of a difference with what I will receive with Social Security, but for my LTD, it made a huge negative impact.

Other things to consider: I felt a LOT better physically when I made the decision to go out of work. Emotionally it has taken some adjustment, and I'm still not fully accepting of my choice.

If your mom is having issues with fatigue (I was) then its probably better to make the move sooner rather than later. But, again, there is the "work ethic" that is instilled in us, and hard to give up, I still have a problem resting just because I'm tired, even though I've been advised to by my doctors, just because I feel like I need to be doing something. Probably this is common to people when they retire. The adjustment has not been easy for me, but my physical health is better for it.

I know you'd stated that your mom only had her SS for retirement, so I don't know that she has any form of disability insurance. Will she be eligible for short term (state insurance) did her employer pay into that? Another factor I ran into (and again I"m just posting this for others that might read this) is that I can't get to my 401K funds. And if anyone has found a way to do it, please let me know. The government has strict rules concerning what is considered to be a hardship withdrawal, and I guess just not having income does not qualify! One has to be in danger of foreclosure, a childs tuition, unpaid medical bills etc. I just hate that the money is in there, and I'm losing more and more due to the economy, but I can't get to it!

I don't know if this is of much help to you, If she's happier working than not, and fatigue (read: exhaustion) is not a major factor, she may very well be happier and better off working. But if she doesn't enjoy her job, or is having trouble keeping up, then by all means encourage her to take that step. There are so many on this forum that have posted how much better they, or their PALS felt after giving up going to work.

take care, :smile:
 
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