New, but unfortunately not the right place

[fleecy]

I am sure every one of you people that has a diagnosis of ALS has probably gone through the anexiety, fear, hope that it is something else, or through the long diagnostic process, that can take years depending on the rate of progression, and the symptoms that are presented to your Doctor. Because of this diagnostic process and where you live, the availability of specialists and your own financial resources, will probably determine the speed at which one does get diagonsed.

Research clearly states that approx 50 % of motor neurons have got to be damaged, before signs of muscle atrophy appear, which is a big clinical diagnostic symptom, this may takes years to appear in some people.It also states that this disease process has been ongoing in the body for years prior to clinical symptoms appearing. I am sure you must agree 2-5 years is a long time to be waiting in limbo to see what happens. There is certainly atipical presentations of this disease also that makes this disease hard to diagnose.

For some people the symptoms are vague, I believe many Doctors would put off evening mentioning this disease until something concrete comes along, aswe all know some people have normal emg's but still get diagnosed while others that show some denervation, may have to take a watch and wait attitude.

I am a new member here trying to understand the process of progression of this disease as I carry two diagnosis but continue to have atipical symptoms that are both subjective and objective in their presentation. The possibility of ALS was brought up by my Doctor about a month ago. I searched looking for a forum that might be able to answer some questions regarding this disease process and with so many members, I thought it would be a very good place to come to have questions answered as many of you have already gone through this process.

I find it unfortunate and a little discerning that my first posting here was answered by 2 members only, and then seemed to veer off the track, away from what the origional intent of my post, which was to get some idea of what to expect, and what the presentation of this disease is like since it manifests itself different in everyone. I was alsolooking for a support network from knowledgable people and maybe some friendship as we may share a common entitity.

If you take the attitude that you have to be diagnosed with ALS to participate in this forum then you are excluding the vast knowledge base and sharing of information that we would hope you would freely exchange with people that I sure go through the same overwhelming fear, and uncertainity that you all probably went through prior to your own experiences and diagnosis.

If you are unwilling to share this information because someons has not been diagnosed yet, then maybe you should clearly state that this is a forum for confirmed ALS diagnosis only.

I know there are lots of ALS forums out their, and maybe anotherone will be a little more informative and welcoming. I will continue to read the posts, to gain information as I await a diagnosis at an ALS speciality clinic, which is not until August.

I will thank the two people that posted to my inquiry about the progression of this disease. It is helpful and I appreciate the time that you took to reply.

 

[Beebe]

For fleecy

Hi fleecy, You really have found the right forum. When I joined over a year ago I found so much comfort here , there are many caring people here. I think what 's happening is there are so many new people and a lot of the posts are similiar even though they are from different people. As you are reading the posts put in a response too. Also, a lot of the Pals are up most of the night, so early morning posts are rare. We care and we are all in this together. My Best to you, Beebe

 

[liz]

Donna -

I think there's a big difference between people who are in the process of being diagnosed with ALS by their physicians and those where a diagnosis has clearly been ruled out. The latter is like somebody who's not an alcoholic attending closed AA meetings.

It sounds like your physician has discussed the possibility of an MND with you, so it makes sense to me that you would be here looking for information. Keep in mind all of us PALS went through the diagnostic phase so we understand that process very well.

Liz

 

[Omar]

Hey Fleecy,

I do agree with you that some symptoms started years before the signs of muscle atrophy appear. I even think that ALS is in a way related to some psychological problems. I don't know
but so far it is still a very weird and mysterious disease and I guess it is good that Psychologists do collaborate with The ALS Neurologists to find out some clues about the disease. So far you have ALS or you are still in the process of being diagnosed?
As for getting replies in here, even though lots of members are registered few are really keeping updating the forum and I guess it is because of the lots of ups and downs ALS patients have, Sometimes I feel much better forgetting about the disease so I stop reading and thinking about it and I try to live as if I am not sick and sometimes I feel much lonely so I log on to the forum to breath.

Omar

 

[sweetpea]

Hi Fleecy - I've been a part of this forum for about 6 months (?), due to the fact that my husband, 56 years old, has been diagnosed with Bulbar Onset ALS. It was a LONG road to that diagnosis. First, we started to see "odd" behavior: leaving lights on, leaving car doors open in January (We live in Michigan = brrr), forgetting to shave, etc. He's always been meticulous in all those things, (it's me who's the forgetful one, usually because I'm doing too many things at once !).

We started with an internist; then neurology; dr. insisted it was not als; I did insist, because hubby was acting the same way his dad did. And we thought it could be Alzheimer disease; And we saw a psychologist; then a neuropsychologist, which led us finally to believe it was in fact ALS. We also saw a psychiatrist, referral by neurologist #1, as he thought all this was Schizo-Affective Disorder.

Then we changed to Neurologist #2, who had doctored hubby's dad, and said that there was slight to mild indication that he was mirroring exactly what dad did - dementia was also a part of that factor as well. Symptoms sort of started July of 2003, or before that; by March 2006 we had a definate diagnosis of ALS. Hubby got more tests that I can begin to remember, including a PET scan that is only done 1 place in our state, and was very costly. We had it done - the University assured us there were grant monies if our Blue Cross would not pay. The test showed NO abnormalities. Other tests showed normal, yet he was changing daily, before our eyes. I did think I saw odd ways that he held his hands, probably in 2002, and wondered about it then. Even in his face, he was different. And I even began to think it was marital problems.

I'm sorry we have to "meet" this way; sadly, diagnosis takes time. I believe the most helpful test was by the neuropsychologist, ruling out the Alzheimer disease. We live in rural Michigan, so doctors and services are not great, but each doctor shows a genuine interest in our case, which is comforting. And we even considered Mayo Clinic.

As the caregiver, I try to read alot of the posts here, seeing if/where my hubby may be similar. It is a very helpful forum. We must not keep silent on this - the more all of us communicate, the greater the forum becomes - we can truly become "family". I, too, was expecting "tons" of answers, and got a few. Yet, keep in mind, sometimes it is very emotionally painful to share - I am a caregiver, so I see it - I don't know what it is like to fear the test results - but I am willing to share my viewpoint of what I saw with hubby with anyone - hoping that it will help in some way.

You will be in our thoughts as you travel this difficult path. Keep in touch

hugs to you,
sweetpea

 

[Frizzel]

Took 11 years

Fleecy,

My diagnosis of Primary Lateral Sclerosis took 11 years to finally get a diagnosis. Now because the progression is moving much more quickly I am being reevaluated for ALS. Either way, even though I've lost my natural ability to walk and use my left hand, life must go on. I still have to work 30 hours a week or more. Omar is right, sometimes we want to just get away from the reality of this disease and still the reality that we need to connect with each other and 'breathe' is just as vital to our sanity.

Having been a cancer survivor as well, I KNOW the difference as Liz stated between 'may have cancer' and being diagnosed 'I've got cancer'. The ground falling out from under us with the diagnosis of having a MND knocked the wind out of me and our family. I also believe I must keep breathing in life until I no longer can.

Go to which ever forum suits you personally. We can't have high expectations of each other here because those of us who are tyring to just 'live' may just need to know there are others we are getting to know are there when we need to vent. We care about each other here AND I can only speak for myself...the only one I can make sure I'm taking care of is myself and my family.

All the best in your journey~

Frizzel

 

[brooksea]

OK

this has got to stop!

people come here to seek shelter from the storm. we do not need insensitive boobs ruining it for people that THINK they are looking death in the eye. please can we have some sort of decorum?

i myself have found the posts of particular PALs to be offensive, but that has not deterred me, as i would just as soon spit in your eye as to let my husband suffer without knowing what to expect, how to comfort him, how to live with this disease. i find the majority of people here very helpful and informative!

PLEASE DO NOT LET ONE OR TWO POSTERS KEEP YOU AWAY. YOU'VE GOT TO BE TUFF!

 

[nspoc]

Hi Fleecy -

Welcome! I am sorry you are going through this agony of your symptoms and not knowing what you have. I saw your post and did not answer because I see the progression as so variable. I just don't feel qualified to comment.

Bur here goes from my experience with Pat, the person in my care.

Terrible sweating on exertion over 10 years ago - then in 2001 inability to stand on toes of left foor. Within a year - tripping and weakness in left leg. Back surgery in 2003 - more progression to weakness in the right side. Diagnosed with NMD in Oct. 2004, ALS in December 2004. Still walking (poorly) and driving until late 2005. Now cannot turn over in bed, completely wheelchair bound, hands have become clumsy and atrophied, weakness in trunk, 34% forced vital capacity. She has been on Bi-Pap for 1 year, at night and when lying flat.

Talks and eats well, although has a just -in-case feeding tube. Gets breathless if talks too much, voice still sounds normal.

Her attitude is amazing, she participates in helping local political candidates, interacts with our neighbors and family, goes to parties ocasionally, and has a vibrant outlook on life.

She tires easily, naps in the afternoon, and sleeps about 12 hours at night.

Little to no Bulbar symptoms - yet she requires nearly total care. I dress and bathe her, position her in bed, put her on a commode with an overhead lift, have installed a Savaria Lift to get her to the second floor of the house - she cannot even manage a stair chairlift. She drives her power wheelchair great! Has little or not pain, no swelling of her extremities (or rarely). She is a whiz at the computer, although her hands are becoming clumsy.

She is 64 y/o now, but seems like 34 - very youthful and energetic mind.

My take is that her breathing will give out before total paralysis sets in. We are planning on a vent when that is needed.

She lived alone, but came to live with me in Chicago (from California) when she began falling. We began acquiring assistive devices mostly before she needed them, but some arrived barely in time - such as her wheel chair. Order that early, get the best one you can (I recommend Permobil) - and order early - it takes forever to get it.

No one's progress on this board seems "average." People have carried on rather well for over a dozen years, and I know of one that was tragically only about six moths.

The progress is incredibly variable - and can plateau. I can see why you did not get many satisfactory answers - I just figured everyone here was so much more knowledgable than I am.

What I have learned on this board is tremendous resources for equipment, some advice on top notch specialists in different regions of the country - and usually tremendous compassion.

For my part - have learned my lesson - and will acknowledge people and their requests. I apologize to you - I just felt others had so much more to offer.

Please hang in there with us - We will travel this journey with you - and you will have a chance to learn and to teach some of us - just as I have learned from you today.

I, personally, hope to hear from you soon.

Beth

 

[Frizzel]

Fleecy

I hope you will learn that we all see, feel and experience life and our own struggles differently with whatever we're going through. Good discussion. I also hope you can glean from this forum as a support as well. Welcome...

 

[Peg B]

Another Place?

Hi Fleecy,

I was diagnosed with ALS Oct 31, 2006. Second opinion U of M says may be Multifocal Motor Neurapathy (MMN). So since that is treatable, I am being treated for that (IVIG X 2 a month. (A lot of people on this forum start with that DX) I cannot write well due to weakness in hand in general and atrophy in baby finger. I cannot move it to the left or straighted it. I can type better since treatment, but use voice recognition for most things (more than a paragraph or two). My EMG was abnormal for 3 limbs and I have one borderline conductive block. You said atrophy does not come until later and is definte for ALS. but the docs still are not sure. So the bottom line from them is to keep going with treatment and see which symptoms show up when to determine DX. Fine with me at this point.- One day at a time really does mean something to me now. I have begun voice lessons and piano lessons for exercise and church choir and because I have time as I am not working anymore. LTD and 36 years done for retirement.

However, back to this forum. I read it everyday but do not post everyday. A lot of things I cannot speak to and I began to find differences for me. I searched a lot for MMN information. It is even rarer than ALS - 5000 cases in US. My cousin has PLS and there are 500 cases in US and Canada to the best of my knowledge. (removed link to inappropriate forum - sorry)

I found it very helpful. Consider yourself prayed for and thought of. Best Wishes, Peg