My neuro vist & biopsy result

[wright]

I respect your point of view, Jamie. I didn't respond to your post to debate you . . . but rather . . . to support you.

Another reason I responded to you, is because I'm sure after your comment about "eventually being diagnosed with ALS" . . . every nervous, undiagnosed person on this forum went to your old posts to see what your symptoms are. They then probably compared their symptoms to your symptoms . . . and got scared that they will eventually be diagnosed with ALS.

Here's an analogy for those of you that did that . . . and for those of you trying to self-diagnose yourself.

Let's say I am talking to someone and next to me sits an animal . . . an animal they can't see. I start to describe the animal . . . and in their mind . . . they feel they already know what the animal is I'm about to describe to them: and let's just say they think I'm about to describe a horse.

So I start by saying this animal has four legs . . . a tail . . . a nose . . . two eyes . . . two ears that sit on top of its head . . . yellow, crooked teeth . . . etc., etc.

They listen and are now 100% convinced that the animal I just described is indeed a horse. Well guess what: it was a Chihuahua that was sitting next to me.

If they would have just gone in with an open mind and know that many, many, many, many different animals have four legs, a tail, a nose, two eyes, two ears, etc. . . . their perception of what I was describing would have been very different.

Bottom line: don't assume you know what you have, just because you have a few symptoms of ALS . . . and just because you know how to spell "google" and "ALS." So many things mimic this disease. Look at the whole picture before you decide you have this or any other disease. Listen to your neuro's because they know more than you.

Neuro's aren't neuro's until they go through 4 years of college . . . then 4 years of medical school (which is pure hell) . . . then 3 years of residency (which is also, pure hell) and usually more because most do a fellowship. If you knew the amount of studying they had to do and the time they had to put in to be a neuro, you would more than likely listen to them when they say: "You don't have ALS." Are there some neuro's that aren't very good? Yes . . . but for the most part . . . they are . . . especially those that specialize.

I hope that helps at least a few of you on here.

 

[KANSASTOM]

Wright, you know us pretty well, as soon as I read it I went to see what his original symptoms were.

 

[rose]

Re: the lyme disease discussion on another thread (didn't want to completely hijack Lydia's post!)

April, my doctor told me that one can have had a tick bite and never know it, so if you had any sort of insect bite that had that all so important bullseye pattern around it, that is a huge indicator towards it having been a tick bite. The business of the tick remaining on the skin isn't "hogwash" but its certainly not an absolute either.

Some antibiotics are ineffective for treating Lyme disease, such as (if I remember) erythromycin. (sp?) I don't know what meds you were on for your infection, but you can't count that they would have been what you needed to combat a tick borne infection.

I saw Oily's reply to you as well, but have not gone over to the pls board to search for her post about it, but what she said in her reply to you is what I was told my my doctor, in that the test for Lyme is not as reliable as one would hope, and repeating it would make a lot of sense for you. Just given that you live in the area that you do would be reason, without you even having had an insect bite that you could remember.

I know your hubby said no doctors for 6 months, but it still, IMHO would be prudent to get another look at the lyme, sooner rather than later. (you can tell him I said so, LOL)

(()))))

 

[rose]

I respect your point of view, Jamie. I didn't respond to your post to debate you . . . but rather . . . to support you.

Another reason I responded to you, is because I'm sure after your comment about "eventually being diagnosed with ALS" . . . every nervous, undiagnosed person on this forum went to your old posts to see what your symptoms are. They then probably compared their symptoms to your symptoms . . . and got scared that they will eventually be diagnosed with ALS.

Here's an analogy for those of you that did that . . . and for those of you trying to self-diagnose yourself.

Let's say I am talking to someone and next to me sits an animal . . . an animal they can't see. I start to describe the animal . . . and in their mind . . . they feel they already know what the animal is I'm about to describe to them: and let's just say they think I'm about to describe a horse.

So I start by saying this animal has four legs . . . a tail . . . a nose . . . two eyes . . . two ears that sit on top of its head . . . yellow, crooked teeth . . . etc., etc.

They listen and are now 100% convinced that the animal I just described is indeed a horse. Well guess what: it was a Chihuahua that was sitting next to me.

If they would have just gone in with an open mind and know that many, many, many, many different animals have four legs, a tail, a nose, two eyes, two ears, etc. . . . their perception of what I was describing would have been very different.

Bottom line: don't assume you know what you have, just because you have a few symptoms of ALS . . . and just because you know how to spell "google" and "ALS." So many things mimic this disease. Look at the whole picture before you decide you have this or any other disease. Listen to your neuro's because they know more than you.

Neuro's aren't neuro's until they go through 4 years of college . . . then 4 years of medical school (which is pure hell) . . . then 3 years of residency (which is also, pure hell) and usually more because most do a fellowship. If you knew the amount of studying they had to do and the time they had to put in to be a neuro, you would more than likely listen to them when they say: "You don't have ALS." Are there some neuro's that aren't very good? Yes . . . but for the most part . . . they are . . . especially those that specialize.

I hope that helps at least a few of you on here.

Just to throw my two cents in. My daughter called me a week or so ago, and said that she was scratching her leg because it itched while she was getting ready for work, and when she looked at it more closely, there was this rash (that she sent me a picture via text message ~ gotta love cell phones)

So anyway, this rash is not raised up, and she'd already put some hydra cortisone cream on it before calling me, and it didn't itch any longer. She wanted me to look it up online, because she "seriously doubted" she could have scratched it hard enough to make blood blisters under the skin.

This girl is far from being a worrier, she didn't think it was any dire condition, she just didn't know what it was and doesn't currently have health insurance, and was running late for work.

So..... I start googling it, and guess what pops up? Menningitis. That's right, a "medical emergency" Every single site stated that a rash like this was a medical emergency, and to rush to a doctor or hospital immediately. The various sites even gave a test one could to to see if it was the pupura rash ~ press a clear drinking glass to it, and if the spots lightened, they weren't the dreaded type rash (but in time they could be so check again later if they lightened up the first time) . So, at my suggestion, she presses a water glass on her leg, and the spots don't lighten.

I was so sure (being a mom and all) that she didn't have meningitis or another horrible condition, and with her having no health insurance, she certainly wasn't in a hurry to go to the ER to find out.

I reasoned that the area had to have itched at one point, or she wouldn't have looked at it, nor would have scratched it, so I told her I thought she was fine, but if she got a headache to call me back right away. (and she was fine, that was the end of it)

But, my point is that this internet that can be such a source of good information, but it doesn't also give us a medical degree in the process.

 

[awieleba]

HI Rose,

everytime I read your posts they have such a calming effect on me!

But, I know i dont have lymes, I will ask my GP to run the test at Ignex and test for heavy metal, blah-blah.
I feel as Jamiet posted, in my heart I know that eventually I will get some sort of MND result. I dont presume to know what it will be, but my health is on the decline. I am going to do all the thereapies etc. but I will live my life and love my life. I just think that is polyanna to think that my muscle will come back and all the symptoms will go away and next month I will be playing tennis and doing pilates at the gym......

I am not being morbid, I am actually thankfull that whatever I have is on the slow progresser side. I pray for 10 more yrs.

I am most thankful for this forum and the abilty to vent and talk about this here. I am no longer talking to family about this and my hubby is on a need to know basis.

Thank you all for your support,

NOW, lets get my thread up to 7 pages like's Roberts!

april

 

[wright]

Once again, April, I ask: what on earth are you basing your dire, self-diagnosis on?

Are you under the impression that MND is the only disease that progresses?

Absolutely nothing so far . . . not one test . . . has indicated you have MND . . . and yet . . . you still say you have it. Your neuro says flat out, you don't have it. Do you honestly think you know more than your neuro?

The only thing I can think of, is your internet searches that somehow lead you to this conclusion. When we teach the nursing students and medical students, we make it a point to tell them to stay off of the internet, because of the MISINFORMATION and INCOMPLETE INFORMATION there is.

 

[Zaphoon]

What A Thread!

Wow!

I have certainly learned a lot by reading the comments on this thread! Well done Wright! Make the neuros prove it is ALS vice the other way around. At the clinic I went to, the doctors there were very aware of those who have already diagnosed themselves via the google thing. The neuros referred to these folks as "another guy that has the script down".

To the newbies:

If you have an upcoming appointment with a neurologist, and, it is your very first appointment, go in to it stupid, not scripted. Do not use words like fasciculations or spasticity. Tell them what you are actually experiencing in non-medical terms and let them figure it all out. I think this will help your relationship with those who specialize in their trade.

Thanks to all of you who contribute so much to this forum.

Zaphoon

 

[BethU]

If you have an upcoming appointment with a neurologist, and, it is your very first appointment, go in to it stupid, not scripted. Do not use words like fasciculations or spasticity. Tell them what you are actually experiencing in non-medical terms and let them figure it all out. I think this will help your relationship with those who specialize in their trade.Zaphoon

Good advice. At my first visit to UCLA Clinic, the neuro told me about things I might be needing in the future, including a cough assist gizmo.

Second visit last week, I saw a different neuro, and asked about the cough assist thing, and he said, "Wow, that's really getting around the Internet now, isn't it?" I decided not to get offended cause it takes too much energy. Also, I do seem to spend half my life on the Internet, so he wasn't far off. Also he had a twinkle in his eye, and a neuro with a sense of humor is to be treasured. Also, he was kinda good looking.

Best experience with a neuro v. internet: When Neuro #2 diagnosed me with Progressive Supranuclear Palsy, I asked him to spell it because I would be looking it up, and he went to his computer and printed out the URLs of a few websites for me to check out.
He gave me the print outs and said "You can trust the information on these sites."

I thought that showed class.

BethU

 

[awieleba]

thanks wright for your comments.

I guess I am playing both sides of the fence, If I do eventually get a mnd diagnosed, then I am mentally prepared. If I dont then GREAT!

On a side note, I asked my specialist (whom is an asst professor of nuerology-thats for you Wright) if she has seen someone with symptoms and clinical findings with test results to go on and develop als a year from now. She said 'no, never'. That is just her expierence, and I do have some doubts about it. She seemed quite confident that in the next 2yrs I wont get als....we will see...we will pray!

Wright....ps....I was in nursing school before I went into sales and then stayed in sales, but I would of been a professors nightmare, huh?

and I still think that its flat out not normal to loose the bulk of your muscle tone seemingly all over your body in a few short months. I have baggy hands and boney feet! It does seem though, that there are a few of us with the same things that happen and cant get a diagnosed. Maybe we have something similiar. I am getting to that point where I will stop searching and start accepting.....