Ever Heard of Going to the Doc too Soon?

[suzannj]

Hi Everybody,
So I posted a few weeks ago that an ALS Specialist cleared me, and pretty much said that he has no idea what I have...but it's not ALS. If he "had to put a label on it I'd say BFS". (Had a "clean" EMG & NCV, MRI and bloodwork was all good) I was happy of course, and have really, truly tried to believe him . . .but I have to say I just don't / can't because of the way my body feels. I am right back to where I was (worry wise) before I saw him.

The question of "too soon" is haunting me. Has anyone heard of, or had personal experience of going to the doctor too early (in that the symptoms just were not advanced enough to be recognized as ALS)? Even right now the arch of my r foot is cramped, my r.calf has been twitching almost non-stop all day today, and intense fatigue (weakness?) in that same area is now ever present. I wish I knew how many people, if any, have been told "it's not ALS" . . . and then it really was.

(My fasciculations started about 4 months ago, followed a few weeks later with cramping of my feet and r. lower leg. If anyone remembers, I had recently started feeling weakness / great fatigue in that same part of my r.leg . . . .but it seemed to disappear for past 2 weeks or so. It's now back, and the "twitching" which is still happening everywhere I have a muslce (even my lips and scalp!) is now predominently in my r.lower leg. I'm also still experiencing myclonic-type jerks once or twice a day, and that cramping feel is also in my hands...but weird enough only on the outer edges.)

Sorry to be one of the "back again and worried" posters . . . I've held off posting this for almost a week trying to convince myself everything is okay, but I feel my gut is telling me it's just not.

Thanks,
Suzann

 

[sdsyd]

Hi Suzann!

Sorry you are struggling right now.
Not to scare you, but My Dr. told me just last week that more often than you think a few months down the line things just "take off". My husband has been trying to help me re-direct my frustration toward the Dr's into the thought process of- a lot of things are easily missed, the body is very complex, and it is often hard to tell one disorder from the next. Unfortunately- sometimes things do have to be literally staring them in the face. I have learned about about ALS through this forum and one thing I see is that Dr's don't just hand this Dx out. They need to be entirely CONVINCED before confirming it because it is a MONSTER with no cure. Alot of the other disorders are managable, treatable, remitting and even cured. In the meantime, we just have to wait and hope and help each other out.

Take care-

Cindy

 

[awieleba]

HI Suzann

I have thought this sooo often! I went very quickly, within a few months of my symptoms and weeks of twitching. You sound alot like me with your symptoms, I have and can relate to every single one. I had a clean emg and 'essential normal' muscle biopsy. The biopsy did show 'scattered atrophic fibers' but not group ones. (in my opinion, atrophy in my muscle is not good) and other than brisk reflexed my exam is normal. My nuero (an als spec) told me no als. Meanwhile, my weakness improves. It is not clinical but weakness from what I know and the PT said that I am very weak in places that are strange--ie. my hands and feet.

I am suppose to go back for a 6 month re-emg. I have decided not to go.

**** I asked my nuero if I came to soon and if I would get als in the next 2 yrs, she said no, I would not. She said she couldnt tell me about 10 yrs from now...I asked her if she has ever had a person who presented like me and then went to develope als, she said no.

I dont know what to believe. I feel that I am getting worse and not better. I dont know anymore. I just thank God that I dont have diagnosed. I am thank full that I can get around, I dont know what will happen to me or what i have or what it will be, I am sick of worrying and crying and dont do it anymore! can I get an amen!

I wish the best for you.

 

[planningguy]

Suzann,

I think that it's wonderful that a specialist cleared you. I hope it was a big weight off your mind. Keep in mind two things: 1) Stress can make symptoms worse, and 2) You can always go back to the Dr. if symptoms progress.

I apologize for not recalling your other posts, but did the specialist recommend any type of follow up or next course of action? You might want to go back over your medical records and see if the easy ones (vitamin deficiency etc.) had been ruled out.

Best of luck,

Robert

 

[Zaphoon]

Susann,

The frustrating thing about muscular diseases/disorders is the amount of time it takes to come to a definitive diagnosed. I would like to know if ANYONE was diagnosed with ALS shortly after exhibiting symptoms. I doubt it. Due to its fatal nature, doctors want to be absolutely certain of the diagnosed before they deliver it.

My experience has been similar but my clinic neuro is seeing me again in December after having seen me in July. This gives me time to get better (or worse) and time has a tendency to bring with it, clarity.

I read this in a book on ALS: "EMG changes may antedate clinical weakness and atrophy suggesting that symptom accrual is a function of the balance between denervation and reinnervation in a region after initiation of the disease process."

It seems to me that the picture is always changing for the neuros. At first, there is not enough of the picture to even begin guessing what the true nature of the beast is. Just look at what people have posted on this forum regarding symptoms. An endless sea of possibilities! With ALS, which comes first, the weakness, fascics, spasticity, arms, legs, fingers, toes... Its all moot because there is no set pattern.

The best thing that could happen for people needing a diagnosed is for someone to come up with a simple swab or "pee in the cup" kind of test. Well, you get what I mean.

The bottome line - for now, the neuros just have to dig and test, dig and test until they are certain the only thing left to tag the picture with is.... ALS. Kind of sad...

Zaphoon

 

[Sammantha]

Suzann, many of us are in that boat................. I was going to doctor's because i was constantly sick and had swollen lymph nodes, but at the same time i had muscle spasms and baclofen helped. I also had something my surgeon thought sounded like a neuralgia.... I had no clue, then i started losing muscle. My surgeon notices it right away since i had been seeing him for so long. He called it muscle wasting. He immediately sent me to University hospital's to test for vasculitis or autoimmune disorders. The Rheumatology and immunology clinic went from doing tests for that stuff to breaking out neurological tools. Then they sent me right on the long path of neurology. Meanwhile i was like hello, why do i have bronchitis, laryngitis, sinus pain, strep throat, stiff joints, FATIGUE yadda yadda......... At that point the muscle stuff was last on my mind.... I never thought that the pain in my jaw was my muscles, i had teeth pulled I had my sinuses checked everything! Then when the other side of my face started in, i knew it had to be muscle. Now my face looks completely different, even family member point it out. When i had muscle spasms in my pelvic and back area, my doc thought it was a kidney stone and when that was ruled out, i just put up with the pain. When a neurological muscle disorder was the only thing it could be my neurologists want it to be something else. I went the backwards way, i had everything ruled out before i started going to a neuro. When i had an abnormal EMG suggestive of ALS my reflexes were fine. Now i have had normal EMG's but my reflexes were brisk, and now i have clonus and the babinski response..... Needless to say my neuro really wants to let me go and say i dont have ALS or any neurological thing going on but as long as i present with signs/symptoms he has to keep seeing me. Most neurologist's that deal with ALS i think get some kind of comfort that when it does happen people are up in years and had longer lives. Not that it is not as devastating, but imagine telling people like you or i that we are going to die in the prime of our lives. So we wait....... I pray for a miracle that i get better everyday, and believe in prayer.

 

[chris_uk]

Well this thread has completly blown my mind! i was going to pay to see a specialist about my constant twitching in cavles and cramps, but i have only had them 2 weeks, should i hold off? i mean if i am told i am ok, after reading this thread i would still have MAJOR doubts !

Wright what do you make of all this? can you go to Doctors too quickly?

Chris

 

[suzannj]

Thanks everyone for giving me your thoughts on this. I was just walking my son in his wagon, and my foot cramp was so bad and my r.lower leg feeling so.....is it weak? Fatigue? I don't know, but in any event I had to rest. And then of course I cried. Anyway -

April - Why have you decided to skip your 6 month emg? I also sent you a PM when you get a chance.

Cindy & April - So I read what Cindy's neuro said about a few months passing and then things really "taking off" and felt completely sick to my stomach, and then next read what April's said (since our symptoms seems to be so similar), and felt good. I hate how it seems too many doctors have too many differing opinions and how ALS is seemingly so different in everyone, and mostly that there is no 'real' test for it! And to think when this all started, in my ignorance I told my husband I was just going to call my doctor and get the blood test for ALS and get it over with . . . little did I know!

Robert - It was a weight off my mind, but only for a few days. Somehow I thought that magically once he said "no als" that the symptoms would disappear. Needless to say they did not. As for follow-up, he only said that he wanted to see me in 3 months to check in. I don't have a copy of my medical records as far this goes, but my sister has her Phd in nutrition so I guess I should get a copy and ask her to take a look right?

Sammantha - I'm glad that you too have not heard that you have ALS, but it stinks to be in medical "limbo" too. It really struck me when you wrote about being in the prime of our lives. It's so true. Every single night I hope that this will go away and that I'll wake up in the morning "all better" and this disgusting nightmare will end. I just want to let this go and get back to my 'real life' before this all started . . . .and then like today, I wake up, stretch and. . . . pop, pop, pop....the twitching starts immediately and when I put my feet on the floor my right foot is sore from cramping. I HATE THIS!

Chris - I'm sorry that my thread has you so freaked out. I don't know what to say . . .

Wright - Have you read this? What are your thoughts on this subject?

Thanks,
Suzann

 

[suzannj]

Oh yeah and one more thing for April: AMEN!

 

[wright]

I suppose that if I could look into the future and I knew I was going to have prostate cancer when I am 80 . . . and I checked now . . . it would be too early.

Here's the deal:

If anyone has symptoms consistent with lower motor neuron death . . . and they get a thorough EMG along with a thorough clinical exam . . . and it is all clean, then they do not have ALS. END . . . OF . . . STORY! If someone does indeed have lower motor neuron death causing their symptoms, it will show-up on an EMG. END . . . OF . . . STORY! EMG's have the ability to find subclinical signs . . . meaning . . . you don't know you have them . . . but the EMG does.

For those who see people post on here that say they have had clean EMG's that later were diagnosed with ALS: they had upper motor neuron problems or uppper motor neuron dominant ALS or pseudobulbar palsy . . . and then later on had lower motor neuron death, which the EMG could finally detect. Upper motor neuron death cannot be detected with an EMG. Those symptoms are diagnosed clinically.

Upper motor neuron problems are: brisk reflexes at a rating of at least 4+ . . . clonus . . . Hoffman . . . Babinski . . . jaw jerk . . . stiffness . . . spasticity . . . weakness due in large part to the stiffness and spasticity.

Even if you have all of the upper motor neuron symptoms and lower motor neuron findings on an EMG . . . it still doesn't mean you have ALS.

If a neuro evaluates you and does so thoroughly . . . and tells you that you don't have ALS . . . PLEASE BELIEVE THEM. They know a hell of a lot more than anyone on here about neurological diseases. If you don't trust them, then get a second opinion.

It just amazes me how so many insist they have ALS when there is no evidence they do. There are so many people on here that would love to be in your shoes. Be thankful you are so lucky and move-on with your lives.

Take your "near-death" experience and do something positive with it. Donate to ALS research. Write your congressman. Donate your time to ALS causes (educate others, volunteer, be an advocate, etc.).

Those are my thoughts.

 

[Zaphoon]

Wright,

You answered a question I had about stiffness and spasticity seemingly causing weakness. Thanks!

Zaphoon

 

[Zaphoon]

Allow Me To Clarify Something

I agree, 100% that if you are showing symptoms that mirror LMN involvement but have a clean EMG, the symptoms are not caused by ALS.

The EMG can change in ALS when the disease progresses. At least, this is my understanding. People diagnosed with PLS are monitored via EMG's for 3-5 years to make sure there has been no progression to ALS. This has been stated many times on this forum.

The quote I have above regarding EMG changes antedating weakness and atrophy refers to reflecting those changes from a previous EMG, obviously. I did not mean to convey that an initial clean EMG doesn't mean anything. It does. No ALS! The only way ALS wouldn't be ruled out would be if the diagnosed is PLS. After 5 years and no LMN involvement, forget about ALS.

I do not have ALS and doubt I will be diagnosed with any motor neuron disease. Odds are in my favor and if you've not been diagnosed yet, yours too!

Wright, I am convinced again and again that a clean EMG = no ALS. I'll leave the UMN stuff for the docs to figure out and ODDS are, it won't wind up being PLS in most cases.

I'm more in favor of a neuropathy or bulging disk or something.

Zaphoon

 

[CindyM]

This topic is on-point for a conversation I had with my pulmonary doc today. He was asking why I was not able to complete the cardio-pulmonary test he did last week and I told him my legs had stopped working. (This test involves a bicycle.)

So then we had a long conversation wherein he made the observation that with some neuromuscular diseases you have to wait until they present themselves more fully developed before you can tell which disease it is.

Like April, I've given up on wishing for better health, or an explanation of what is wrong. Someday I may get better. Someday I may know why I fail these tests.

I told my Doc we will run whatever tests they think may be able to nail this thing down. But after we've exhausted the tests, I am only going to monitor my breathing. (That sounds kind of important to me. ) And I only want to monitor it yearly, unless my chest muscles announce otherwise. He agreed, and we have a plan. So the next thing is to re-do the blood work for MG, a pulmonary "sniff test" for diaphragm paralysis, and then me and my bi-Pap will be ok for a year.
Cindy

 

[brendapals]

Cindy-

Good for you! It certainly sounds like you have all of your ducks in a row. A nurse I work with today asked me how I managed to do all of my running with our boys, go to school 1 day a week, and work 4 days a week, and I simply told her ..........."VERY WELL".

You will most definitely have a great year!
Never give up,
Never let up,
Never lose faith,
brenda

 

[suzannj]

First I'd like to say that I'm glad I posted this thread afterall, because it has certainly sparked interest, and great informative dialog. Second, Brenda: You are an amazing woman. I have to say after I read your post, I sat back for a second and literally said out loud "You f-in' rock" (as teenager-dude as that remark sounds....it was my first reaction! ) Grandpa Al, if you're reading this, this string may be a "sticky" post-it candidate for this area of the Forums! And . . . last but not least.....Wright -

Once again I was SO hoping that you would reply, and am thankful that you did. I am actually going to print your message, hang it on my wall, and read it every single day. You must get frustrated with continually reading new posts from people like me who are worrying themselves sick (no pun intended) and in your opinion....for no good reason. In my case, (and without belaboring the point with too many details), so many against-statistical-probability 'bad things' have happend to me, that when this latest health issue started (and now continues) I'm sure is part of the reason I am having such a hard time believing my neurologist that this is just BFS. You said in another person's thread (paraphrasing here) essentially to stay off the internet because there is so much mis and/or half information out there. And I, (I'm sure like many, many others), read and read and read everything I can get my hands-on . . . which in this day and age is 99% garnered directly from Google searches, etc. It's information overload, and when you're so scared, you just keep reading and then all of the different views start to get a bit jumbled together. Combine that with all of the bizarre seemingly ALS-related "symptoms" happening every minute of the day.....and waalaa you get someone like me! LOL

So, thank you again. I will try my very best to take your opinion (and my doctor's) to heart and believe the BFS diagnosis. I went over to the BFS version of the Forums, and sure enough it is filled with people having symptoms just like mine.....and many conversations surrounding "this is not ALS".

You seemed a little aggravated, and I can assure you I've already set myself on a path of trying to do some good with this diagnosis / whole experience. Any allottment I have per year for charity donations will now all go to ALS research (sorry SPCA!), I'm already volunteering with ALS Guardian Angels, my prayers now always include PALS and finding a cure.

Sorry for the novel of reply. I hope everyone is having a peaceful night,
Suzann