Need help!

[alswife?]

Hi,
My husband- 45 years old has been having symptoms since the end of summer. Cramping in muscles- legs, hands, and arms. Pain in all extremities(especially hands). He has had muscle loss in legs, arms, chest, and neck (very noticeable to us both). He has been having fasiculations in calfs and upper thigh muscles. He has had trouble with mucus in his throat- constant throat clearing (mostly after eating). They treated him with anti-acid medications and that seemed to make it worse- he discontinued them. Family practitioner isn't sure what is going on- ordered MRI- it came back good. Sent us to neuro and he gave my husband a 3 min. standard neuro exam and then stated that my husband is a healthy young man and that all symptoms are in his head and that he doesn't have als. My husband asked, why the fasiculations- he stated that he was not having fasiculations and he would have them in his tongue if it was als and no where else. My husband then asked about the loss of muscle mass and the neuro told him that he hasn't lost muscle mass- again it is all in his head. This neuro had never before examined my husband- how does get off telling him that he hasn't lost muscle mass? We are now waiting to talk to the family prac. three unanswered calls- nurse states that dr is still looking at the chart and deciding a course of action. We have had this dr for 16 years- always been very please with him, his thoroughness, his promptness with responses. This is all very frustrating. We have altered diet by going all organic. Husband had several amalgam fillings (8-10) switched out within the last year by a dentist that didn't use all the precautions that we have since learned about. Still has several root canals. Also, he is a P.E. teacher. He is outside on the field with children 5 days a week up to 6 hours a day. I am concerned with the thought of pesticides sprayed on the grass. We have read many things on line and are just worried sick. My husband is sure it is als based on his symptoms. I am hoping and praying constantly that he is wrong. If anyone has any suggestions for doctors, tests, diet, supplements, anything I would greatly appreciate it. Thanks, Billie

 

[paula B]

Hi Billie

Hi Billie,
Wow sorry to hear about the problems your having.
About the only thing i can suggest is maybe go get a second opinion.
I am sure others on here will give you better advise so just hang in there.

PaulaB

 

[Meg1]

Your husband needs to be seen at an ALS center. Neither his family practioner nor a general neurologist is qualified to evaluate a patient for ALS and you are wasting your time with them. Get your doc to refer you to an ALSA-approved ALS center.

And no one knows what causes ALS and there is no known treatment. Eating organic food, removing amalgam fillings and avoiding pesticides may make you both feel better but they won't ward off ALS or treat the disease.

 

[Al]

Hi Billie. First of all the Neuro is totally wrong saying that he wouldn't have fasciculations anywhere else and only in his tongue. Most people on this site have fasciculations and not all of them , me included do not have them in our tongues. As for the muscle wasting has your GP noticed the muscle loss or does your husband not see him often enough that he would notice? I would be telling my family doctor that I insist on a consult by a Clinic or at least a Neuro experienced in ALS. I was my GP's first ALS patient and my Neuro's. They have to learn somewhere but not at my expense. AL.

 

[alswife?]

AL,
Thanks for responding to my message. Do you think my husband's symptoms sound like als? We are praying that it is something else (something less life threatening), but my husband has done lots of research and says that this is the only thing that all of his symptoms line up with exactly- pain in legs, feet, arms, and lately his neck; fasiculations in calfs, burning sensation in foot that travels up his leg, waking up with cramped fingers, lots of mucus in his throat that he has trouble clearing, and of course the loss of muscle mass ( I see this in his legs, arms, chest, and even in his neck!). I'm scared! Billie

 

[CindyM]

Hi Billie. I am sorry for all the trouble you are having. My best to you and your family. It is very hard to be optimistic while waiting for a DX but if at all possible you and your husband must seek the advice of doctors who know and understand this disease and then wait patiently while they run all the tests and rule out other possibilities. Al is right, physicians outside a specialized clinic have not seen enough patients with ALS to have the experience to make informed desicisions. I worried at first, as most people do when facing an uncertain future. It helped me to realize that this disease will come-or not- regardless of how much I fret about it. So I plan for the worst and hope for the best.

 

[Al]

Hi Billie. There are a couple of other variants of ALS that your husband could have as well as a couple of other things. There are what they call benign fasciculations that the fasic's could be. The pain is not a usual symptom of ALS unless you strain the muscles. The muscle loss could be explained by other things. I'd try to get into an ALS Clinic and try not to worry until then. It's not easy but you have to do it to preserve your sanity. AL.

 

[alswife?]

Al or anyone else,

What other diseases or illnesses can have some of the same or similar symptoms as als? I read about Kennedy's disease for the first time the other day after reading about it on this site. It seems as though my husband's symptoms might look like that. I don't know. Any information from anyone out there would be greatly appreciated.
Thanks, Billie

 

[Al]

Multi focal Motor Neuropathy comes to mind. Lymme disease, Progressive Muscular Atrophy just to name a few. There are lots of diseases and some of the prognosis are nowhere near as bad as ALS. Trust the clinic and wait for the tests to be in. AL. How long has the muscle mass been getting smaller that you could notice it?

 

[alswife?]

AL, I would say that I have noticed the muscle mass getting smaller in the last six weeks or so. Billie

 

[Al]

Sorry to ask so many questions but how much smaller?. Fast loss is not usually a symptom of ALS in the extremities.

 

[Lindoglvr]

What an idiot neurologist! Unfortunately, there are some out there. Your husband needs a thorough neuro work up. Find another neuro. His examination should include a thorough neuro exam in the office, along with blood testing for things like Lyme's, lupus, etc, and evoked potentials and a EMG would be in order as well....as well as MRI. There are several diseases that have similar symptoms. Also, with several of the diseases, they don't present the same way, everyone is individualized in their symtpoms, how fast they progress etc.

Find another qualified neurologist, doesn't necessarily need to be an ALS center at this point, unless you get that diagnosis. The above testing should be performed though. I hope this will be beneficial to you.

Linda