Have concerns. Please advise

[jerbear_13]

I have not been officially diagnosed with BFS as of yet but in my neuro notes, he chalks my symptoms up to anxiety.

In early January I had been dealing with a globus sensation in my throat for about a month when I began twiching all over my body after exercising one day in late February. I saw my doctor who took some blood and referred me to a neruologist. My blood tests came back showing that I was deficient in both vitamin D and B-12 so I began taking suppliments. When I went to the neurologist, he did a nerve conduction study and an EMG both came back normal. He then told me to start taking Vitamin D, Magnesium and calcium. Some days it helps better than others. He also told me to continue to work out because it is good for the muscles. Anyways, I then began having some trouble swallowing about a couple weeks ago nothing serious, just when I am relaxing. When I drink or eat it is totally fine. Went back to neruo, they did an MRI of my brainstem (While he assured me it wasn't ALS) the MRI came back normal, had a barrium swallow and that came back normal as well.

I was told to treat it as acid reflux even though there wasn't much evidence to suggest that. Now recently I have started to develope pain in both my calves. They aren't cramping or ultra flexed or anything. They work just fine and the muscle can relax but they ache so bad. I have tried literally everything. Magnesium, Tylenol, Ibuprofen, heat and cold, stretching (does help a little) tiger balm and so on. I went to the ER the other night because they hurt so bad. The ER did an ultra sound of my legs, tested my basic metabolic panel, CBC Auto Diff and CPK. Everything came back normal. My CPK was 106 out of 400. I am not sure what to do. Is this something anyone else experiences with BFS?

PLEASE give me some advice or anything that could help calm my nerves or pain. I am going to start a really healthy, organic and hypoallergenic diet today (I've read that helps some people) and I am supposed to be meeting with an ALS specialist in a few weeks to see if he thinks this is BFS (I am almost sure it is).

Should I be worried about ALS?

Jeff
23 yr male

 

[Nikki J]

No you should not. Stay on the bfs forum. Follow up as the physicians tell you

 

[jerbear_13]

I forgot to mention, there is some charley horseness going on in my legs but only when I stretch them in certain ways. Thank you for responding so fast. I hope to hear from more of you.

 

[MaxEidswick]

Jeff -- just see a doctor and come back when you have a reason to.

 

[jerbear_13]

I am going to see an ALS specialist in a couple weeks. I guess I am just looking for some reassurance.

 

[jerbear_13]

Misdiagnosis

How common is it for others to be diagnosed with another neuro problem such as BFS or BCFS when it is really ALS?

I am getting frustrated looking into certain diseases because something always pops up where someone was misdiagnosed. How awful! Does that mean there is no good way for a non-ALS diagnosis to be given correctly?

I am sorry. This is just so frustrating and unbelievable in this day and age with all of our medical advances.

I had twitching all over and a globus sensation for about a month when I had my EMG. The doctor said that he didn't even detect any fascilations. I then had a little trouble just swallowing regularly so they gave me an MRI and barium swallow. Clean again. Now painful legs and charley horses. I got my general care to give me a referral to an ALS specialist which I hope will happen soon.

Basically I am just getting really angry. If I get a benign diagnosis, how much can I believe that? I hear that BFS and BCFS are much more common but it seems like a lot of misdiagnosis is out there.

Please give me some advice.

Thanks,
Jeff
23 yr old male

 

[jerbear_13]

Re: Misdiagnosis

I don't intend to create panic. I could be very wrong. Just trying to look for answers

 

[GilWest]

Re: Misdiagnosis

There is a big difference between a little trouble swallowing. A clean EMG is a good thing. Worry when the EMG doc finishes the test and says, "Has anyone mentioned Lou Gehrig's disease to you?" Don't go finding trouble and that is all this disease is...trouble.

 

[GilWest]

Re: Misdiagnosis

Also, begin to worry about swallowing when you simply cannot eat anymore. The results of my mom's swallow test was, "It is actually dangerous for you to eat any more."

 

[jerbear_13]

Re: Misdiagnosis

I really appreciate the input. I am not trying to cause anger or frustration. I am simply very curious. I didn't know anything about neurology except it was the study of the nervous system, when this all started happening. All of this is overwhelming and new to me.

 

[Mediasmart]

You aren't trying to find help. You are just starved for attention. If you had ALS instead of hypochondria you might get some. But you don't and you are.

 

[Nikki J]

Please stick to one thread and to the do I have ALS section if you must post. I merged and moved your new thread. Still suggest you stay on the bfs forum

 

[Dusty7]

Globus sensation--can be caused by anxiety
Pain in the calves--pain is not a symptom of ALS
Clean EMG--it's not ALS
23 years old--very, very, very unlikely it's ALS
Rejecting and distrusting all doctors who tell you it's not ALS--anxiety, hypochondria, etc.

You do not have ALS.

 

[jerbear_13]

Again, I am really sorry for causing problems on here. I feel like I am making a lot of you angry when that is my intent. As far as wanting attention, I don't. I am just vey scared. Sorry to bother you all and thank you for the valueable input. I will leave the forum.

 

[jerbear_13]

*NOT my intent to make you angry