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Bfloyd

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Joined
Apr 8, 2012
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20
Reason
Learn about ALS
Country
US
State
Wa
City
Richland
Good morning, After being sent to a second nuro dr (nuro muscular) He did a quick once over and said your fine. Mind you since the first nuro and second really don't get that a size 14 to a 10 in a couple months is not fine. But looking at me I look pretty good. I called the office a few days later basically saying I'm not happy with the appt and felt I was not being heard. The nurse said he felt confident in his dianosis and I could come back if wanted. My other nuro Dr tho thought he would be doing a muscle biopsy and he didn't feel nessicary.

I do believe that they are correct in the no ALS diagnosis. It seems pretty clear that no weakness no als. I'm wondering if you have any thoughts about the following. I do know there are many many diseases that can be simple or complex that can cause these symptoms.

Test results back and normal are EMG (full body), blood work, full spine and brain mri normal, passed office routine nuro testing. I am grateful for that.

Symtoms as of today: Spasms and twitching you can see just watching my body.
Skin crawling to point of hair on arms standing up
Lip twitches when smile
Have lost a large amount of muscle and or fat to point of that anorexic look.
Chest muscles concave, feel like nothing holding my bones together and breast have fallen a few inches and changed shape.
Breathing has changed, I"m assuming from loss of chest muscle but don't like to self diagnosis.
My biggest change is my neck started spasming like a large pulse and my neck lost a lot of muscle and when contracted looks like I"m a size 0 in the neck.


I"m a pretty solid woman and have never been skinny but when my clothes are falling off, bra won't fit because there's not fat on my ribs it's a big change. If I was trying to diet I'd understand.

I have learned from 10 years of chronic pain the worst you can do if goggle and assume the worst. This is the first time I've been very concerned. My family Dr is concerned also as she knows what I looked like a few months ago but the 2 nuro's don't seem to be .

She wants to send me to the U of Wa, they think I"m fine.

Do you just keep searching and pushing till you get at least some sort of explanation or is this normal with nuro symtoms. I'm getting tired physically and mentally from this trying to figure it out. I've had tinnitus for years and that makes me weary enough. I can deal with chronic pain, there's alot you can do to help that.

Ted you had said no weakness no als, and I get that. If I"m going to live with non stop spasm and loss of muscle than it would be nice to know how and why it happen so quick in 6 months.

I feel like I've been dismissed a bit by the last nuro dr. I feel sometimes when they see you on chronic pain meds , had back surgery and anti depressant it's all in your head.

We have looked into some of the symtoms of using long term medication but my family Dr does not see that as the issue.

I've seen some have suffered for years before a correct diagnosis wither it be MS, ALS and many others.

I really don't know where to go from here. It's a 4 month wait to university since this will now offically be a third opinion.

I appreciate your thoughts . Bobbi Jo
 
One other quick question, since my drs are bickering back and forth and getting back into one is next to impossible has anyone gone to ER and said I'm not leaving till I get at least some help
 
Bobbi Jo I have read through your posts since you joined the forum. The most obvious thing that jumps forward is BFS. I realize that you have lost a lot of weight which is concerning, but also with the amount of worrying that you have been doing weight loss is something that easily occurs. I think all you can do at this point is trust the neuro. The only other thing is that you had some sort of virus that triggered the BFS and your other symptoms, and you are currently still experiencing post viral symptoms. That is almost impossible to nail down for doctors. Good nutrition, good probiotics, moderate exercise all help. Best of luck.
Laurel
 
To keep weight on you must eat high calorie high fat foods. I have to make a concious effort to keep my weight. You should too. If you aren't satisfied and feel dismissed ask your PCP to refer you to another neurologist to figure out what getting you. It's clearly not ALS with your clean EMGs and no clinical weakness. Good luck! I hope it's something treatable!
 
I would not do that. I know you don't want to hear this but health anxiety can cause everything you have described. You ask how I know? Been there done that.

Your symptoms are closer to the ones I dealt with than ALS.
 
Laurel was spot on. That would have been my answer too. And if you're not happy (which you aren't), get that third opinion. But I would definitely take ALS out of the picture. Read the newest stickie by Alyoop, it may help. You also need to trust the doc tor. Trust is the key. As for going to the ER, that won't make a difference. The ER is to be used for emergencies and you're not in that situation. The most you might get is a prescription for anxiety meds. Neurologists don't frequent the ER's otherwise they would have to spend 24 7 there.

Open your mind to a new possibility. Good luck,
 
Sorry to hear that you're even deeper in limboland, Bfloyd. According to the ALSA National website, there is an ALSA certified Center of Excellence at the following:

Virginia Mason Medical Center Neurology Department
An ALS Association Certified Center of Excellence
1100 9th Avenue
P.O. Box 900, X7-NEU
Seattle, WA 98111
Medical Director - Michael Elliot, MD and Julie Hodapp, MD
Phone: 206-341-0420
Fax: 206-625-7240

The U of W clinic appears to be affiliated with MDA.

Next closest ALS centers I can find are in Portland -- an ALSA Center and an MDA center.

The only other recommendation that I can give you is to join the a b o u t B F S dot c o m forum and ask for neuro recommendations in your area from those folks. Not to mention that there are some very knowledgeable and supportive folks over there as well.

And, for the record, I don't think you have ALS either. But you do need a neuro who's a bit more compassionate and doesn't blow off a quick and large weight loss, knowing full well that BFS sufferers tend to be hypervigilant about that sort of thing.
 
Thank you do much. Yes I'm not even sure if going to the university is needed. The BFS is what seems to be the consensus. What I'm and family dr not so happy about is its not been explained and I would think there could be some sort of way to slow the atrophy and stop the spasm in calf. I will be curious if that is the final diagnosis how they can treat it if any ... It's amazing how something like these symptoms hit out of blue and don't stop. I will be making more effort in my food and eat even when I don't feel like it. Will be good to learn about BFS. Thank you
 
Y'all did notice this part of the post, didn't you?

I do believe that they are correct in the no ALS diagnosis. It seems pretty clear that no weakness no als. I'm wondering if you have any thoughts about the following. I do know there are many many diseases that can be simple or complex that can cause these symptoms.

She agrees with us -- no ALS. What she doesn't know is what she has and her current neuros are blowing her off with regard to getting a more specific answer.

Does anybody know a good neurologist in the area that might be easier for Bfloyd to work with?
 
Having had a long-term relationship with my GP prior to becoming ill has helped save my sanity multiple times over the last year. It's great that you have a positive relationship with yours. It's an invaluable asset.

I'm not in the U.S., but I can't imagine going to the ER will result in much other than a long wait and a frustrating exam. The one thing I've decided makes a difference is time. So, the several months until the University appointment might be a good thing. My opinion is to keep meeting with your GP regularly to monitor any changes. If things get worse or become debilitating, I'd hope it would result in a more prompt appointment and maybe a clearer set of presenting symptoms for evaluation.

Good luck.
 
Just to go in a different direction.
I would talk to my GP about my weight loss and what might be causing it. It is dramatic an larger people ( like me) do not just dump weight suddenly for no reason.

It's not necessarily a good idea to blame it on a neurological illness, just because you have some very minor neurological symptoms.

The weight loss could be caused by other sinister things such as cancer, that you might be missing. I lost a lot of weight last year ( intentionally) and I looked like I had atrophy everywhere. I saw dents and dips, which turned out to be ME. Just had too much fat covering it to notice, so with my UMN issues, it looked like LMN spread. It wasn't

You need a full work up, and not from a neurologist.
 
S lives in Washington State. She may know.

And Tr, when did you get a Southern D r a w l ?
 
Who will you be seeing at UW Bfloyd? This is also where I recieve care. They are a outstanding group of drs there. What you can do is call them back and ask to be put on the cancelation list. I to got in there for the first time this way. The First dr I seen there was dr Samii, I love that guy! After two years of going to drs and they diagnosing me with everything but what I had, Dr Samii Knew within half hour I had MND. He didn't know which type but he got to MND quickly. He is not even a neuro, only movement disorder specialist. Skip the ER, doesn't work, tried it about 7 or 8 times. Good luck to you

Betty
 
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