Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Do any of you have your worst symptoms within a couple hours of waking? The thing that has me still worried about early MS is this. It seems as if everyone has worsening symptoms by the end of the day. It seems my ivig worked, so now I'm in pretty good shape, but of course ivig is only temporary. Before I got it, however, my speech was way worse in the morning. Any ideas? I wasn't positive for antibodies but had improvement with mestinon and ivig.
You might want to read about Mestinon in the Links Group. The easiest explanation for the slurred speech at one hour is that the time right after you take your medication is the time the medication blood levels are lowest. Absorption time and half life depend on a number of things, personal metabolism, dose, and how you take it being important. In general it is poorly absorbed and each of us usually has to find the best way to manage the dose with our activity and the activity of our MG. It is also one of those drugs sensitive to storage conditions. b.
Mary.
With any day I get worse as the day goes on and added activity will exacerbate that if I don't take extra pyridostigmine. If I were doing the day described I would need more meds plus rest periods interspersed.
Remember walking is a repetitive movement and walking along depletes those muscles. Resting at intervals helps as does making sure you have enough meds on board. It takes a while to get a feel for how to do this so some gentle experimenting works. This is not a med that you can just leave at the same level regaurdless of time of day or activity. Everyone is a bit different in how they respond. I think right now I need more in the evenings as I am still having double vision and change in gait.
You also mentioned you may have some morning weakness. My doctor gave me the ER to fill in the gaps so I take it at 7 am and 7 pm and add in the slower acting as needed.
You had a really full and busy day! Marie
Joe
I didn't like the timespan.
I believe if you take it during the night or about an hour before you wake up ....you will be ok. If I were you I would take before bed and every 3 hours if you can if you wake up. I would never set an alarm to take it. I am convinced that will help.
With my own condition, I travel between two straits...one being the illness itself...the other being the medication side effects. As a result, I have to stay a bit on the sick side with the full knowledge that a dose of Dostinex will have me back to some form of homeostasis in under two hours. You kind view your medication from a steady-state standpoint, but know that it can also kick in during a crisis.
Oftentimes, however; you can second guess if you have too much illness and not enough medication and vice-versa. My meds have a 5 day half-life and you don't want to have to fight psychotic depression for two or more days if you get a huge spike of medication.
My medication varies from manufacturer to manufacturer as well. My docs look at me like I'm crazy (which is probably true), but there are differences.
I usually feel pretty good in the mornings...but, I have huge hot flashes late afternoon that can last 2 to 13 hours...depending upon how much stress I've been under.
Sorry to go so long on this post...
Or, yes, it could just be because the disease affects us all so differently. :) I hope you're feeling better soon.
As far as my bad mornings go, I now take my timespan at 10pm and then start the Mestinon 60mg at 6am and then every 4 hours thru 6pm. This has brought my mornings from terrible to not to bad. Maybe this will last.