new awaiting diagnosis

[fleecy]

Hi Everyone.... Sorry about the long post

I am new but have been going through the numerous posts here. I have so many questions that I don't know where to start. I do not have an official diagnosis but have a suspected one. I am sure you probably get tired of answering questions but I am scared and do not know who else to ask. I have read alot about als on the internet. I am caught between a MS, als and Severe pernicious anemia. The Doctor tells me it is definately neuromuscular. This is the worst part of anything waiting for tests then waiting for results.

My doctor is always talking about progression. So I I guess I will ask questions about this as I am unsure what he is refering to. I will give ou a bit of a history. In 2004 I started experiencing difficulty swallowing, I could not swallow liquids or things of soft consistency, pudding, water, saliva, or yogart. This was investigated with no narrowing or stricture, they were stumped. This went away, to resurface at a later date, I also experienced trouble with my voice, slurring words for 2 days then stopped, shaky voice when I talked but this also went away. I was having extreme fatigue and pain in my right upper arm also. It would be OK when I woke but the more I used it the more it fatigued until I could hardly lift it. I also started dropping things. You would be sure you had them then you would drop them. My arm gets somewhat better if I don't use it but fatigues if I do.

In Dec 2004 I was also experiencing some fatigue in my right leg that would also seem to come and go depending on how much I used it. I started having muscle fasciculations in my right arm that started one day and did not stop for two days then they moved to my diaphram and rib cage, I now experience them everywhere. I have noticed then recently in my hands with these twitches literally moving my thumbs. Midway 2005, I started experiencing weakness in my left leg, this stayed about 6 months with a slight foot drop, and then to my left arm recently, where I find it hard to hold a book to read, my arm fatigues. I have alos experienced fatigue in my jaw while chewing and my neck where my head feels like it weighs 100 lbs and my neck cannot support it. My breathing is also affected, although my pulmonary test just documented some diaphramic weakness. I have numerous other little symptoms that accompany this and will not get into this. I find most of these symptoms get better with rest but never go away completely, but the more I use them the more they fatigue.

I also experience spacisity and muscle cramps, and have some pathologicla reflexes, positive babinski, brisk reflex of the knee, positive rhomburg, diminished vibratory sensation, and have had some flaccid muscles. I also lost over 45 lbs but am regaining the weight. I have fallen.

My first question is... When doctors are talking about progression, I do not understand if they mean progression of one limb, or progression as in affecting numerous areas. Like mine going from my right arm to my right leg, to my left leg then arm, neck and mouth. Is this what they are talking about?

My Second Question is do you feel somewhat better in the early stages, my symptoms never go away but I can fatigue them to a point where they are unusuable. I can still walk, drive, although sometimes it is difficult to hold the clutch in my car down, the fatigue hits my thigh muscles and makes it difficult to hold and my right arm will fatigue when I shift gears on long drives.

Recently I went to the hospital ER because both my legs tightened up and I could not go up or down stairs, It was extremely painful and I was having a hard time getting up from a sitting position, or sitting down. Does this happen with this disease. I have experiences cramping in my toes, feet calves thighs and right arm but this was the first time I had experiences anything like this. I was treated with IV solumedral. Has anyone ever had this treatment with ALS?

I am confused scared and it has taken over my life. Nothing seems to get done fast enough. I would appreciate any insight that you could give me on this disease progression.

Thanks a bunch and take care

 

[ltr]

Your story sounds quite familiar. Many of the symptoms you describe is how my symptoms have been, and I think others who are undiagnosed on the forum as well. I am really sorry you are suffering these symptoms and I know that awaiting test results and diagnosis is horrible. The first thing that comes to mind to me when I read your post was myasthenia gravis. Please read the symptoms I copied from the website below. Though you only mentioned SOME of them, you don't have to have them all and they sound a lot like what you describe. If you agree, please visit the website and take it to your doc. I am very sure others will be posting to help you with your questions. Have you visited a neuromuscular clinic? That would be your best bet. I do not have als, but symptoms like yours. From what I understand, als is unremitting. The muscles never regain their strength. So, in my opinion, you do not have als, but everyone is different. Good luck. Leslie

http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/31055.html

* Muscles that become progressively weaker with prolonged use
* Muscle weakness that seems better in the morning or after resting and worse after activity or at the end of the day
* Drooping eyelids
* Blurred or double vision
* A change in facial expressions, such as a smile that looks more like a grimace
* Jaw muscles that tire easily, such as when chewing gum or meat
* Difficulty swallowing
* Slurred or impaired speech
* Weakness in arms, legs, fingers, hands or neck
* Shortness of breath

 

[Meg1]

You need to be seen at an ALS center and I would be careful about taking advice/opinions from people about ALS who do not have ALS. Presentations can vary greatly and even general neurologists don't see enough of the disease to reliably diagnose it. No one who hasn't examined you can give you an informed opinion about your specific case.

I can tell you a little about ALS symptoms in general (since I have it) and differences between ALS and MG (since that was my last differential). Cramping, spasticity, pathological reflexes, positive babinski and pain are not symptoms of MG. Pain is not a typical symptom of ALS although some PALS experience it. In the early stages, ALS symptoms do wax and wane. Other muscles compensate for weakened ones and we learn to accommodate our weak muscles. It's not unusual to speak clearly one day and slur words another. Some days it might be possible to maneuver a difficult button and some days in won't. In general, though, given the passage of enough time (and that period varies from person to person), the disease is progressive.

To answer your questions..

Progression can refer to increasing weakness or disability in one limb or area as well as to movement of the weakness from one area to another. Some people prefer to call it "regression" which is more descriptive of what happens, IMO, but perhaps confusing to some.

Your second question about variability of symptoms is, I think, answered in the previous paragraph.

Solumedrol is not used to treat ALS.

As far as determining what you have, an ALS clinic is the best place to go to evaluate you for ALS mimics, as well as for ALS itself. Such a clinic will do the proper testing which should include, at a minimum an EMG, SFEMG and MRI to rule out (or in) other disorders which have similar symptoms. Keep us posted.

Good luck.

 

[ltr]

Well, Fleecy, I guess that says it all. Disregard my entire post because apparently, according to Dr. Meg I was completely wrong and she always makes sure she tells posters in such a rude and inconsiderate manner. Actually, better yet, maybe a moderator can come on and delete my advice and opinions completely. You won Meg--are you keeping track of how many people you have gotten rid of? Do you do a cheer every time you get one more person not to come back? You should have been kicked off this forum a long time ago, but instead you have been allowed to get rid of really nice people who actually need the kindness from strangers. Looks like I'm the next one since JenniLee, so mark it down, I wouldn't want you to forget.

 

[fleecy]

Leslie

Hi Leslie,

I am sorry to have caused you some discomfort. I like you am undiagnosed by they are leaning towards als AS I have had many tests done over the past two years. I have experienced some muscle wasting especially in my tongue along with fasciculations in my tongue. they tell me not many neuromuscular diseases will cause this. I really appreciated your input, as we all hope that this will be anything except ALS. Please do not allow someone else to upset you as we are all entitled to our own opinions and beliefs. I want to thank you for your input. I did go to the site and check it out but I believe it was already ruled out. I feel a little uncomfortable, being new here and seem to have started something.

Please, don't allow other people to discourage you as we all need the help and support, ideas, research, different perspectives and anything else you would like to contribute to people in need of hope and frienship.

Thanks for listening and responding to me.

Donna

 

[CindyM]

Thank you Annmarie for a reasoned and considerate response. I, too, hope Leslie doesn't go away and I hope fleecy feels welcome. I also have to say that I think Meg's technical information is apreciated by those who need detailed scientific facts. We have a lot of members like Al and Quadbliss and MT and a host of others who can explain how to cope and what to expect. Occasionally someone wants detailed medical facts, and when they do I am always glad to see Meg's answer.

The question, Meg, is how you view this board. There is a school of thought that says only the person walking in a particuar set of shoes can understand a given issue. Myself, I am fron the school of thought that we are all humans, trying to do the best we can.

Cindy

 

[liz]

Donna -

You did not start anything. This "bad blood" predates your joining the forum. I'm sorry you were made to feel uncomfortable by others' posts and I hope that everybody involved can take a good long look at how their behavior effects newcomers. You definitely do not owe anybody an apology.

That said, welcome to the forum. I hope that you will find it informative and supportive.

Best wishes,

Liz

 

[Sunshine]

Leslie,

I agree with you. There are many people on this site that have not been diagnosed either way yet. It seems that it can take many years to be diagnosed with some people. Are they supposed to just sit back and not ask questions or give advice from their experience? People are only giving suggestions. We are here to help people not insult them. Yes, the people who have been diagnose can give better advise but everyone is different. Those who have been diagnosed more than likely had to wait a long time to get that diagnosis. Sometimes it take just a kind word to get a person through the day. Some people don't have family or friends to talk to about this. This is their only support system. If people don't have something supportive to say just don't say it at all. So Leslie, others need you and would like for you to stay. God Bless. Sunshine

 

[Jamiet]

Fleecy,

What you state is pretty concerning for ALS. You should get to a clinic soon. Your story is alot like mine and i'm undiag, but attend the clinic in June and are abou 99% sure, it will be diagnosed day.

There are differernt things that work for different people. My friend is a LPN for the ALS assn. Her daughether has had it for 7 years.

Whats worked for here, was IVIG (yes, that's what you mentioned), minocycline (it's in the final phase of trials and fixin to be approved) and of course, antioxidants and a few other things i don't know of.

There are lots of wonderful people here that will help, answer your questions, please ask. I like answering....so keep me busy.....lol

Take care

rgds,

jamie

 

[patricia1]

not posting for a while

I too stopped posting I find people want to ask questions but when you answer them the way they dont want to hear they get all upset I only said what I experienced aand if it scares you I am sorry, You have to walk the walk to talk the talk and half the people here are very sick and the other half think they are sick,and some dont have anything else to do, THIS IS A TERRIBLE DISEASE. and if you cant take what we say then you shouldnt be here. I rather read the post and keep my remarls to myself to avoid upsetting anyone Pat:evil:

 

[joelc]

I also took a sabatical from posting. I needed time to focus on something else other than this disease. I got so busy I did not have time to think about anything, including this disease. We each deal with things differently, some research, some deny, some get angry, some cry, etc. That is what makes this forum so great - there is someone that fits each coping mechanism there is.
We need each other and need different perspectives on this disease. It is healthy!
What we don`t need are personal attacks or overly sensitive people that get upset if someone has a differing experience, or opinion.
Sometimes we read something and take it personally- I am guilty of doing this myself. But if we step back for a minute and re-read....it might not be a personal attack at all and turn out to be helpful information.

Let`s love and support one another, and enjoy our diversity! We really need everyone to stay here and keep posting! Please find the strength and forgiveness to do this.

My 2 cents, for what it`s worth.

 

[Meg1]

Cindy --

Please read the previous two posts from PALS. They make the point I have been making to you in PM's. The nervous nellies who don't even have ALS, who pass out incorrect information as if they're the oracle of Delphi and are constantly having their feelings hurt are running off the people who this form is supposed to be there to help. I know I'm not the only poster who's been telling you this. Someone needs to let the worried well know that there are other forums for them and this is a forum for people with ALS.

 

[CindyM]

Hi Meg- I've sent you a PM on this issue. BTW I like the factual information you gave last night on the value of medical studies. I appreciate your analytical turn of mind. Enjoy your day, Cindy

 

[nspoc]

Hi everyone-

I think this thread has moved a little from Fleecy's question - but I do not know where else to put my comment - so here goes.

Meg1 seems very angry at the worried well. At first I wondered about that myself. Then I saw the post from terrified Chad Bowman asking for support and help - he also had not been diagnosed, but was in the process at Mayo. The next thing I knew he had died. As I understand it - he never made it back from Mayo.

I understand that a very few people have no chance of having ALS - but they are still worried that despite the evidence it might be true. Their terror is real. I know they could take their problems elsewhere - but my compassion extends to them, as well.

As for Meg1 - I really appreciate her scientific and data-based approach. I really find it cuts to the chase - and is very helpful to me. I am very sorry that the frightened people are so upsetting to her - I feel both compassion for them, and also a connection to Meg1 - in fact I really feel I rely on her!

After Chad - I will never again assume that someone's fright is out of proportion. I am haunted by his fear, moved by his kindness, and very sad for his mother and fiancee. I have been changed by the experience of encountering him.

I hope people will not leave this forum - I believe Meg1 has her right to express pain as well - and she seems very distressed by people who might take advantage of the compassion of PALS. I can see her point. But pain is pain, and I have time for these people, too.

My advice - let Meg1 be her scientific, contributing self, and accept her feelings.

At the same time- let those who are so inclined comfort the terrified - it hurts no one.

In a public forum like this we all have to seek out that which speaks to us - and screen out the annoying. I have found tremendous value here, and growth. One of the valuable people has been Meg1.

Best to everyone - Beth

 

[brooksea]

BETH

are you a Tibetan monk? that was well said. thank you.
cj