Confused

[yesterdog]

Hello all. so... I have been going to an MS clinic at a University for over a year and yesterday I was seen by the head of the dept. He told me I probably do not have MS after all but that my symptoms are getting worse but my brain lesions are not.So he thinks the lesions are from old migraines and the symptoms are not related to them. He has referred me to the ALS clinic and ordered an EMG/NCS. After reading lots of posts on this sight I am 99% sure I do NOT have ALS. I am a tiny bit worried because he did refer me to see the ALS team. So I have had a zillion blood tests to rule out everything under the sun,all neg. I had a normal spinal tap, but ended up in the hospital for 4 days because I had terrible muscle spasms they could not interrupt. I was in agony. But my symptoms don't sound like ALS. I am stiff in my legs , arms and trunk especially in the morning, but it gets better throughout the day. I have weakness in my arms and legs (more on my left side). I walk funny. Mostly because my heel hurts but also sometimes I am stiff. Sometimes people think I am drunk. I have terrible plantar facsitis and cannot bear weight on my right heel. I sleep differently now. I sleep on my side but now I have to prop up the shoulder on the top or it squishes down and it makes it a little hard to breath. I am getting clumsy with my left hand and my PCP said it looks like I have a very small amount of muscle wasting between my thumb and first finger. My neuro doesn't see it. He says a tiny bit of wasting on the pinky side of my hand. I have noticed that my hands look old but really can't pinpoint why and cannot see what they see. I am SOB in the mornings only or if I am trying to put on my shoes. I have a toe that twitches. Just one toe. It has been twitching for 6 months. No other twitching at all.In fact at first it twitched all the time but now much much less. But it is slow. It feels like a string on the bottom of my foot is pulling it down. My foot looks fine. I have hyperactive lower extremity reflexes on some visits and hypo on others. I have neg babinski. I have positive whatever it is when they tap your middle finger and your first finger moves toward your thumb but only on the right side. The worse thing is that I have pitting edema in both legs, and edema in my arms and abdomen that no one can explain. My heart is fine and I walk all the time. The thing is I work every day. Sometimes I have to lift my leg by pulling on the pant leg to climb the stairs, but other days I do not. Most days are very good! Some days are not. But if this were ALS wouldn't I be sicker? Wouldn't I be sick every day? Also I have very bad joint pain and that doesn't fit. The other weird thing is that this mostly started on one day. I was fine. Watching West Wing reruns before bed and had a feeling that something was terribly wrong.Then my head and tongue went numb. I went to the ER and almost died from hypokalemia and hypomagnesemia that took 4 days to get back to normal. That is when it all started. Anyway I am getting tired of all the doctor visits and all the money spent with no answers. My thinking is maybe this isn't a neuro thing after all. Maybe I should see another kind of doctor and not go to the ALS clinic at all. Any thoughts? Also you all are so brave. Thank you for taking time to read this.

 

[Atsugi]

Your thinking seems sound to me.

I hesitate to contradict a doctor who has actually examined you, but based on what you've written, I'm not thinking ALS. The EMG will give a big clue what's going on, so keep your appointment with the ALS clinic.

A lot of what you wrote has nothing to do with ALS. ALS is a rare disease in of the Voluntary Nervous System that controls your voluntary muscles. When a motor nerve is destroyed, its corresponding muscle can never move again, it lays limp and useless, paralyzed.

I wouldn't worry about ALS while you're waiting. Expect them to rule out ALS with the EMG.

Your GP doctor is trained to follow health investigations wherever they go. She'll decide which specialty to use next.

 

[yesterdog]

Thank you so much. I won't worry then.