My Visit To ALS Clinic

[mac53]

Hi Everyone,

I first posted a few months ago. I went to the ALS Clinic in Indinapolis and saw the chief Nero and his assistant and a med. student. They did a complete work up and said I didn't have ALS. They scheudled a EMG and the Doctor performing the test was suppose to be the best in the Midwest. He said the test was clean and I did not have ALS. However, I'm still experiencing a lot of muscle twitches and my hand feels stiff and numb, some weakness in my left thumb and my right foot is stiff and feels numb. Just looking for some advise. They believe this is something from a virus that I had in Oct. 06. They want me to come back in July.

Thanks for your replies.

Mac

[tabney]

Mac,

Praise be to God that you don't have ALS. What a wonderful blessing. Have you discussed any other possible dx with your neuro? There are so many disorders with your symptoms. Discuss possibilities with your neuro and try not to read too much into what you are experiencing until you have a dx. I will keep you in my thoughts and prayers.

Toni

[mac53]

No,

I haven't discussed much with them. He just said he thinks it's from a virus. I get concerend with the continual twitches and stiffness. My hand swells and gets very stiff and my foot is very stiff and I have occasonal twitches all over. This started with numbness in my foot after a flu like virus that lasted for several weeks. So, I'm not sure what to think? Thanks for your help.

Mac

[ltr]

Hi Mac,

I'm really happy for you. It must be quite a relief. Have you ever had a consultation with a rheumatologist? Sometimes they can think of some funky tests to run, especially after a virus has caused problems. They also are better at diagnosing any autoimmune diseases. I know how you feel with the continued symptoms and no answers, it's really frustrating. If the neuro's don't see something obvious and what they feel to be devastating, then the workup is pretty much dropped. Keep trying and hopefully you will find some relief. Leslie

[Jamiet]

get tested 4 lyme. send your blood
2 igenex labs. go online and get the shipping ins.

you need thecompletr ly,e..6050 panel.

look up symptoms on lyme disease. its a possibility , esp due 2 the flu like illness . u will be amazed.

good luck

[ltr]

Jamie,

Have you heard back from the lab yet? How are you and your symptoms doing? Hope things are going well for you. Leslie

[mac53]

Hi,

They tested me for lyme and several arthritic diseases.. all came back negative. I'm expericning stiffenss in hands and right foot. Numbness in thumb and my jaws have ached. On occassion I get a nasal sound when I speak. Two ALS clinic nero. said I did not have ALS. But these symptoms keep coming. Sometimes I feel normal during the day.. Very stiff when I wake up and hands fall asleep at night. Then I get stiff during the day. Thanks for your help

[CindyM]

Hi Steve. It is unnerving not to know what is going on. Trust me, I know! I think a lot of diseases involving both nerves and muscles cannot be easily diagnosed. Sometimes they can only tell something if and when the symptoms get worse. But our symptoms, yours and mine, that is, are relatively mild considering so I for one am holding on to that. PS. Shoudn't you be out getting measured for a tux or something? Aren't you the guy with a family wedding this month? :-P Cindy

[ltr]

Have you ever looked at Isaac's syndrome? I am not trying to diagnose you, just give you some ideas to look at. I suffer stiffness, twitching, weakness, cramping--all but the weakness are worse at rest. Jamie mentioned it to me and then the neuro talked about with me, maybe it's something to mention at your next visit. Good luck. Leslie


http://www.ninds.nih.gov/disorders/isaacs_syndrome/isaacs_syndrome.htm

[mac53]

I haven't looked into Issac syndrome. I will look it up! It has been very frustrating. I don't get muscle twitches all the time during the day. Just random and in different spots. Cindy, that BIG day is approaching in fact it is this Saturday when my beloved daughter changes her name forever. Thank you so much for asking. I'm keeping a positive attitude with all that has gone on in my body for my own sanity and for the sake of my family! Blessings on all of you!!! Mac