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buschclub

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Joined
Dec 1, 2008
Messages
16
Diagnosis
12/2008
Country
US
State
nc
City
charlotte
hello and good day i have been suffering from progressive muscle weakness of the limbs and bulbar muscle's i have been through a gammet of test the last 2 years spinal tap mri's muscle biospy 6 emg's everyone mumbled motor neuron disease or anterior horn cell disease i was recently sent for another emg with dr. jeffery rothstein at john hopkins university one of the top als doctors in the nation who delivered a diagnosis of possible als and said a definte diagnosis could be made in 6 months after follow up emg if symptoms continue and emg is positive again. i have diffuse muscle atrophy increased reflexes in both ankles right arm and knee and bilateral hoffman's sign plus hyperactive jaw jaerk reflex the emg's have been getting slowly worse and always read chronic motor neuron disease or polyradiclopathy or motor neuropathy the two latter ruled out by nerve condution and mri i was wondering how fast or slow some of your diagnosis may have been i am a 29 year old white male and i think my age has allowed me a slower progression coulped with being young has made my diagnosis slower. should i accept this as a diagnosis or what i don'nt know what to do i can;nt tell people i have als without a definate diagnosis but i yearn to give my family some answers thanks and i look forward to your comments. his assement reads as follows
mr. mccary id a 29 year-old man with progressive arm and leg weakness, as well as dysarthia,dysphagia,and dyspnea. on exam he has muscle atrophy in the limbs, mild diffuse muscle weakness,and hyperreflexia. he may possible have amyotrophic lateral scerosis. less likly explanations onclude polyradiculopathy,motor neurophy or myopathy
 

ktmj

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Dixie
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Redneck
Wow friend, it would be impossible for any of us to comment better than a John Hopkins neurologist, but you have found a great group of otherwise helpful people.

It sounds like you have run the wringer of neurologists like many of us, but if you have not heard ALS from anyone else a second opinion would be in order.

There are a couple of pretty educated people on here that might pick up on something else in your report and respond.

Just want to welcome you - everyone here is here for a reason they don't necessarily want to be here for, but most are extremely helpful.

Best wishes.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
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PALS
Diagnosis
05/2008
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US
State
California
City
Los Angeles
Hi, Busch ... I'm sorry you have this hanging over your head. I hope it will turn out to be one of the less threatening conditions.

I think you can tell people ... at least your family members ... that you have a possible diagnosed of ALS, but that the neurologists are continuing to test you for several months to rule out other conditions. That will at least get everybody praying for you, and that's always a help!

I hate to see young people get this ... I sure hope it's something else.

Hang in there. The waiting's the worse part.
 

buschclub

Member
Joined
Dec 1, 2008
Messages
16
Diagnosis
12/2008
Country
US
State
nc
City
charlotte
possible als

hello and thanks for the comments i was diagnosed with possible als from local neurologist amoung others and sent for second opinion at john hopkins and i trust rothsteins judgement i have feared that i had als for almost two years when fasciculalations and atrophy became clear just to share some of my story it all started in 2005 when i had a fever of unknown orgin for 6 months and was admitted to hospital and treated but the fatigue never went away so they thought and told me i had chronic fatique syndrome but soon in 2006 weaknees and slight atrophy followed at this time als was'nt even a word i knew i was sent for infectious disease work up went through the whole lyme disease thing also sent for gatrointeroligst work up very extensive but weakness atrophy and fasciculations became worse along with muscle tightness in the legs then the neurological work up started in 2006 also which was abnormal from the start and kept on getting worse long story short the next one and a half years was spent doing muscle biospy 4 mri's spinal tap 6 emg's many blood test for sensimotor neuropathy etc all the things that can mimic als the reason i am posting a bit of my story is that i thought i was the only one with such a drawn out diagnosis but as i read post here i see i was wrong. any way being stuck in the middle as i am with possible als is hard because i don'nt want to own als until i have to but at the same time i know i need to start owning something to start the process of accepting. i have much love for all affected by als weather i turn out to have it or not is to be determined i will let you folks know about my diagnosis when i get a definate answer on repeat emg in 4 months. ps i have been offered ruizole but i have not taken the drug yet. the cost is to high i feel for all here who want to take this the only drug approved by the fda for als and can not afford it.
thanks
 

lovelily

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Hello bushclub!

Sorry for this possible diagnoses, and all that you have been through. Don't feel that you have to wait 4 more months, if you feel like you need support in the mean time. The folks here are very compassionate, and have a wealth of information to share.

They are also very good humored, when you need it most!
 

tmasters

Senior member
Joined
Feb 19, 2008
Messages
531
Reason
PALS
Diagnosis
08/2008
Country
US
State
California
City
Anaheim
Hi buschclub,

I know exactly what you're going through as far as the diagnosis limbo though it sounds like you've been at it much longer than me.

First time I heard "suspected ALS" was in January 2008 and I received my diagnosis the next August. In the mean time, I told my family and friends that it was just that: suspected ALS, and that other things are being ruled out. Sometimes I really just needed to unload that off my chest. Holding it inside was too much.

That was a horrible time. Especially those first 2 weeks in January. I feel for you and I really hope you don't have this.

In my case I would try to pin the doc down on what else he suspects, and what tests he needs to rule it out.

Keep the faith,
Tom
 

jodeeszakacs

Member
Joined
Dec 7, 2008
Messages
11
Diagnosis
06/2008
Country
US
State
ny
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oneida
I have an 8 year old with the same issues. We have also been awaiting a diagnosis for a couple of years now. I have taken him to Johns Hopkins also where I was told that it was most likely a VERY rare form of ALS. I was told there is no treatment and no cure so not to dwell on the "name" of his upper and lower motor neuron disease. I sympathesize with your pain. You are in my prayers.
 

lydia

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Jan 25, 2007
Messages
677
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buschclub,

I am sorry to hear what you are going through and will pray it turns out to be something else. I see you said you are having a repeat EMG in 4 months; what happened on the earlier ones?

Lydia
 

buschclub

Member
Joined
Dec 1, 2008
Messages
16
Diagnosis
12/2008
Country
US
State
nc
City
charlotte
early emg's

hello and thanks for hte question my earlier emgs say the fist 2 showed fasciculations and mild neurogenic wave form ex. polyphasia reduced reqruitment and increased duration of muaps no fibs or positive shrp waves at this point. my neuro exam has always been postive for als but in the early stages the emg was suggestive but was missing positive sharp waves and fibs the last 2 i have dine showed wide spread denervation and renervation ex polyphasia reduced reqruitment and increased duration plus fasciculations fibs and positive sharp waves in many muscles tested so as they explain this process to me like this the emg alone suggest als first as most likley and then polyradiclopathy or motor neuropathy i know polyradiclopathy would mean multiple sites of neve damage in atleat 2 different area's of the spine which in my case mri of spine is normal except for mild deg. disc disease as far as motor neuropathy goes i have had all blood testing that can be done to rule these out and as my neurologist explains the reason for the waiting peroid is he need a follow up emg to specify diagnosis many may ask why you have had many but neurologist on trust their emg's so dr rothstein at hopkins has only done 1 emg and he says for definitive diagnosis a repeat emg must follow to ensure progression and rate..
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Man, that's hard to read. Can you help us out and use a period and a capital once in a while?

AL.
 

buschclub

Member
Joined
Dec 1, 2008
Messages
16
Diagnosis
12/2008
Country
US
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nc
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charlotte
capt. al

hello sir and thanks for your interest in my post sory for the bad grammer i have some cognitive problems which is called ftld along with my moter neuron damage sorry for the inconvenience.
 

buschclub

Member
Joined
Dec 1, 2008
Messages
16
Diagnosis
12/2008
Country
US
State
nc
City
charlotte
als

hello its been nice visiting your forums but i never thought a senior member would make such a post i do have many cognitive problems as a result of my moter neuron disease and in stead of a post like please include some peroids or capital letters i would hope you would'nt judge me or my intent to provide an accurate story of my picture sorry this can'nt be done with out capital letters or peroids i am just a 29 year old young man married to a wonderful wife who has been stricken with a diagnosis of possible als which has caused me much fear hence why i joined this site but anyway thanks for everyone's time.
robert
 

wheeler641

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Oct 19, 2008
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indiana
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dyer
I do not Al had any intent on hurting your feelings, I have not been a member for long, but Al is a sweet, compassionate man. and would never do anything to hurt a members feelings, from the posts I have read he looks after the members like they are his own family.
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
I too read that as just a comment, a suggestion and perhaps a subtle way of trying to calm you down, rather than a negative remark. I understand that 'stream of consciousness' way of writing does tend to surface up when one is extremely scared or upset, and wishes to pour out one's feeling and thoughts. D
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
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uk
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uk
hi robert

firstly,al would not have meant anything bad by his comment.
i too have cognitive problems and bad co ordination ,typing is hard,i do manage with one hand better and i dont bother with capitals.

my heart goes out to you,i could feel your desperation and fear in your post.
i was 31yrs when i started with mnd,it is a big shock i know to be so young and active then find yourself with such a disabling desease.
untill you get a definate diagnosed try to keep some hope,with your age and slow progression if it turns out to be als you have a chance of many many more years with your wife,plus the hope of a cure in the future.
please tell your family everything so they can give you the support you need.
please stay with the forum also,we can help with support and info.
we are all here for you when ever you need us.
godbless:)
 
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