Possible Misdiagnosis

[joseybee]

I have a good friend that was diagnosed with ALS in the srping of 2000 at the age of 47. It is almost 5 years since this diagnosis and we are wondering if it may have been a misdiagnosis. He seems not to have much of a change within that time. There has been a big weight loss, sometimes trembling of the hands. Some medications he has taken are Prednison and Tizanadine. Is it posssible this could be something else and not ALS.

[CCF-Neuro-M.D.-CS]

Without more clinical information and the basis for your friends diagnosis, I cannot comment on whether this was a misdiagnosis or not

Some types of ALS can be quite slow in progression eg Progressive Lateral Sclerosis. I do not know if this was your friends diagnosis or not

If he/she is in doubt, maybe you could seek a seconds opinion. If you are in the cleveland area, the Cleveland Clinic ALS Center could do that for them (Dr. Erik Prioro)

Good luck

[MYJOY2]

Hi, I just read your question and I am wondering about my spouse who has twitching in his neck, body, head and shoulders constantly every day.  Some days the twitching is worse if he has just sat down.  He was exposed to some dioxins years ago and now has migraine headaches, loss of coordination and drops things a lot.  He has never been diagnosed with a nerve disorder yet.  Could it be neuromuscular problems? I appreciate any comments. Thanks

[stenik]

16 moths ago i had a full hystarectomy due to internal bleeding which caused gangrene.I had tha gangrene removed 6x9x2 and 9x4x2 were the sizes..and felt so much better at the time.For the last 6months i have felt the same pain and had a little bleeding.I have spoke to my gp as i am concernd that the disease is back.My gp said this would be impossible i do not agree with this.can you please give me your advise.......urgently.
             Kind regards
              stenik

[kwag]

Trust your instincts.  If you think there is a problem then by all means get it checked out.

[Sparksfmly]

I am not a doctor but sometimes feel like one because of all the things I have had to study about for my son.  He is seven years old and has a major delay in all areas of learning and motor skills.  First thought to teachers,family and even his primary doctor was ADHD.  We were sent to a psychologist for evaluation.  She noticed he was shaking in his hands and arms so she did a few tests such as "hold your arms out straight infront of you."  He was trimbling in his arms. "now spread your fingers apart."  His fingers began to trimble as well.  She did some other tests with him and told me " HES GOT TREMORS."  She also stated that my son did not show enough signs of attention disorder but he is hyperactive which could be caused from the Neurological problem asscosiated with the tremor.  To me, I thought he was just nervous or frustrated, I never thought of a neurological disorder.  Along with the trimbling of the hands and not being able to sit still at all he also had a lot of head aches and his head twitches when he is in a relaxed state like before he falls asleep.  We have been through several diagnosis.  He finaly had a MRI done last week after fighting all of this for YEARS.  His MRI showed discoloration of the myelin.  That statement gave me more research.  Along with it I received a diferential diagnosis (first posiable reason why this is this way) of Leukodystrophy.  While looking into Leukodystrophy it had a lot of related symptoms to ALS, Multiple Sclerosis and parkinsons disease.  Miagrains are considered neurological too.  so far I havebroke it down to the myelin for my son ( after 5 doctors and 5 diagnosis) Your myelin is your nerves protection. Easy way to discribe it: take an electric cord, the inside of the cord is wiring to transport electricity from the outlet to the lamp (your nerves) and the coating on the outside is to keep the curent going in the correct direction and to insulate the wires so you dont lose power (myelin is the outside coating of your nerve and does the same thing) if your dog chews the cord then the electricty can shot out of that hole and cause the lamp to flicker or at times not even work. My son can be thinking "keep your hands still" but because of the hole in the myelin, it never fully makes it to its destination so his hand is still shaking.  I have not figured out if this is also causing his vomiting (which he has now learned to control) but I am guessing it does.  I would suggest a full MRI be done if it hasnt already.  If your doctor doesnt feel it important than find another doctor.  I learned this the hard way and my son suffered becuase of it. This has taken me almost the seven years to get to this point and we are still not done.  We have more blood work and UA's to take to see if hes missing chemicals that support the myelins growth.  Then it will be on to find the right medication and theropy treatment.  I hope this helps someone so they will not have to go through the years and arguments with doctors that i have had to go through. sometimes it take a second third and fourth opinion to finaly get the answer.