Update with Disability, Medications & Coming off Rebif Effects
 

This update is I found out Monday that Social Security wants me to have a mental exam. I was suppose to receive an answer I thought regarding their decision but instead I have to take a mental exam by their doctor...on Sept 17th! So another 2 months now will have to go by waiting! August 19th is soon approaching though - thats the date I get to finally go to an MS Center! I'm happy about that - I've been waiting for 2 months now almost.

Its been 2 weeks I think for me coming off of Rebif. I haven't felt the hug for a while which is good, but I'm still getting dizzy, my body feeling heavy, double vision is now starting to happen a lot more plus it starts to happen when I'm not in a moving vehicle. My mother says that my speech is a lot more slurred and slowed, as with my concentration. It's like I have to constantly be doing something too - like when I sit in my chair, I'm constantly typing on the computer. When I'm up, I can't stop walking in circles lol...I think too much. Plus I've been having insomnia really bad lately - like now its almost 3am..

Ok now, I wanted to tell all of you all the medication that I'm currently on, what dosage they are at as well, both OTC and prescription. Note, when I list these, I will tell you what the directions on the bottle says...

Over the Counter:
-Equate Acetaminophen 500mg gelcaps (2 every 6 hours)
-Equate Naproxen Sodium 220mg liquid capsules (1 capsule every 8-12 hours)
-Dollar General Ibuprofen 220mg coated tablets (1 every 4-6 hours)
-Equate Nighttime Sleep Aid Diphenhydramine HCI 25mg mini-caplets (2 caplets at bedtime)

Prescription:
-Clonazepam (Klonopin) .0.5mg tablets (1-2 at bedtime)
-Sertraline (Zoloft) 50mg (1 every morning)
-Estazolam (Prosom) 2mg (1 at bedtime)
-Baclofen 10mg (1 every 3-4 hours)
-Promethazine (Phenergan) 25mg (1 every 4-6 hours)
-Ibuprofen (Motrin) 600mg (1 every 8 hours as needed)

I do not take all of these every day. The ones I take everyday are Baclofen, Zoloft, Estazolam at bedtime along with maybe the Equate Sleep Aid but even those don't work sometimes.

The question I have regarding Baclofen - 10mg is a very small dose IMO from what I researched. I've saw where people take 120mg a day prescribed! I admit, I've taken more than 10mg at once, most I've ever taken at once is 50mg. Sometimes if I can't sleep I take 2 Estazolam pills, one at bedtime, then another one if I still can't sleep - and even that doesn't help sometimes.

Some weird symptoms that have been going on lately are hearing things - like music such as classical or bluegrass lol - then I've even heard my own grandmother/brother arguing in the middle of the night - so I get up, and they are both sleeping! Weird I tell you!! Plus I've had weird dreams, but they seem so real. I use to have bad nightmares when I was married, but the dreams I have now are not bad dreams, they are just weird dreams that seem so much real.

I don't take klonopin anymore, I've just had it for a while, like since March or April. I've used it once or twice in the last 2 weeks but not sure if it worked.

Phenergen is used for nausea, which sometimes I take it and some tums after I eat if I feel bloated.

Another thing is that sometimes my heart either feels like its beating too fast, or too slow, which both makes me feel nauseous. Most of the time, it feels that my blood is flowing so slow through my body.

My forearms and thighs are the parts that feel this way. Like right now my forearms hurt in the muscles. I feel lightheaded and think I'm ready for bed now. I feel really weird, but wanted to write this. I feel nauseous right now tbh, along with dizzy. I've taken almost 90mg of baclofen today, along with estazolam 2mg, one phenergen, and 150mg of zoloft (1 this morning, and 2 tonight at the same time). I almost feel like I want to throw up - only thing I've had to eat was some shrimp, gummy worms - pringles - pie lol and cereal. Which I always keep a cup of water with me at all times.

Also I've noticed when I close my eyes, if I tighten the pressure, I feel like air inside my ears or something like that - thats the best way to describe it.


I guess thats all for now - cuz I don't feel so good right, I feel sick to my stomach :(

Oh Sky! Can we count down our days together until our MS appt? I've never been so excited to get to the docs. Weird.

I smoke pot for my nausea, it works wonders, but I don't think you're in one of those states that has a med mj law. I take exactly the same amount of zoloft, it helps with the morning nausea. Maybe a little more will help? I was really surprised when my doc suggested that and it worked.

My guess is that's a lot of OCT stuff, ibuprofen really upsets my stomach. I can't take it more than every once in a while, usually for an "other" kind of pain (like if I hit my head or smashed a finger). But you say you don't take it all the time.

A lot of the meds you are taking cause sleepiness and nausea. Based on what you took last night, I am sure your stomach was upset! :eek: I still think seeing a GI doctor is a good idea for you as the upset stomach may not be related to the medications or MS. Please check with your pharmacist, who should be part of your medical team, and talk to them about some of the medications you are taking and the combination of medicines you are taking.

As for the mental exam for SSDI, if I remember correctly, many of us had to have that exam done. It's simple tests that determine things like anxiety, depression, and cognitive issues. I did not do well on some of the cognitive tests and some I did just awful on. My results were consistent with others who have MS. It was very insightful to me to have it done.

Again, please review your medication list with your pharmacist. You may be doing more harm taking this combination.

I thought that 60 mg per day was the maximum dose per day for baclofen. I took 20 mg 3 times per day for a few years. I would have never taken 50 mg at one time. I would also guess that this mix of drugs is causing your tummy problems. You need to be careful or you could end up with ulcers and bleeding or other problems.

I am one of the many here that had the mental exam for SSD. The guy who did it was also the guy that my neuro had me make an app't for early on in my diagnosis and my insurance would not pay for it. So when I told him that, I thought he was mad enough he was going to get red in the face. He said that no one should ever be denied a test just because insurance woul not pay for it. So he scheduled a full mental exam instead of the mini mental exam that SSD was requiring. And as tkrik said it was very insightful. It helped me understand that some f the funny things that were going on in my MS life were real. There was a real reason for my hearing things not as the were being said but as I was percieving them, not able to find words or at least not able to speak them even though they were in my mind. It also helped my husband to understand me a little more. I will always be grateful for his genourosity

The mental exam revealed the areas where there were deficits so that I could get help in developing strategies to accomodate them. It helps a lot to know that and I only wish that I had been given the test sooner. I now have one done every 2 years or so.

Don't be overly concerned about the test being recommended. It is for your benefit and will allow you to get help in the areas that may be needed.

With love, Erika

That test will get SSD, sometimes faster, than your Neuro just
stating, that you have MS..