This is something all of those who have or know someone with Multiple Sclerosis need to pay close attention to!! Well Drs treat MS patients all the time like its nothing with a potentially dangerous drug, steroids. That’s about the only thing they do use on us MSers when we have flare ups!! Whether it be a bout of optic neuritis, or our legs go numb, or our speech gets slurred or anything thats causing a spell. That’s the first thing drs do, Probably because they don’t know of anything else, or do they??!!! They treat us with 3 or 5 days of IV courses of solumedrol, AKA steroids!!!! and there’s no telling how many or how few of these it will take to cause us to develop in Cushings Syndrome ????I was told by one Doctor that, it would take a huge amount of Steroids to cause this. They were treating me with 1000 milligrams of solumedrol every month because I couldn’t take any of the injectables, and then with every flare or every thing that happened with my MS they would give me more steroids. WELL I found out the hard way , that it doesn’t take a huge amount of steroids to cause this painful disease caused Cushings disease/Syndrome. Which I now have as well. Its called exogeneous Cushings disease. Take a little time and look this up. I am so wrecked now from this, and, can not be treated by steroids anymore either. So I have no idea what will happen upon my next flare. I look and feel miserable. I also developed DVT Deep vein thrombosis, aka Blood clot. So that lead to taking coumadin and weekly blood draws through my port till we can get the blood levels right. It was always inconsistent numbers for some reason. So after another DVT scan, it looks as though the Blood Clot is gone, but I am told by the Oncologist as long as I have the port, I will remain on blood thinners. I went up to the Mayo clinic in Jacksonville and after months ot overnight trips and dozens of tests run, we finally get a few answers, but not to what I thought in my mind would have happened. I was told, yes I had Cushings Syndrome which was caused from the excessive Solumedrol. There was nothing we could do about it besides stay away from Steroids, and it will eventually get out of my system, but will comeback if I have to take steroids again. (Remember, that is how they treat MS Flare ups) I either have to go through this again, or just wait out the Flare up and wait for it to run it’s course. And as far as treatment for my MS, there is nothing else they can do besides treat the symptoms as they occur. I was hoping that when I went up there, they would have a miraculous cure and would make all of this go away.. Not~ Please, please warn others about how this can happen to them from too many of these 3 day IV solumedrol treatments as well. Drs use this like candy to treat our MS, and the resulting Cushings is miserable! . and there’s no telling how many or how few of these it will take to cause us to develop Cushings disease???? Someone HAS to make it known…. Ive got to get to Montel!! LOL I know I may be guinea pig on this, but it needs to be known what may end up happening to so many Msers in the long run? Not only the pain and aggravation of Ms, but I wouldn’t wish Cushings on anyone. Its as you can see an ever changing disease. I found that out just from rubbing hydrocortizone on my hands for a few days when I had a rash… dumb idea.. Hey, idiotic me didn’t even think it was a steroid!! I found out different the next morning. If you use steroids at all, look up Cushings Syndrome, it’s worth your time. I cant get the photos to line up like I wanted to, but I think you can figure out that they are backwards chronologically. You can see how quickly these changes occurred. One Dr. thought I was just putting on weight and needed to exercise. He couldn’t explain the hump on my back or extreme puffyness of my face, the blueish lines on my back and chest, or lastly the pain.. I so many times can just look at someone and tell if they have Cushings. I do not understand why there is so little information on this out in the world. Yet, if you go online, there is tons of info on it. I wonder how many people that have illnesses like asthma or Rheumatoid Arthritis and being treated with Steroids now have this Cushings Syndrome complicating things. I am sure there are people walking around who have it and have all the symptoms, but Dr’s are leading them to believe it is all in their head. I sincerely hope this article just might help someone.
I received this post some time ago and thought it explained what my symptoms felt like pretty good. I took the liberty to tweak it just a bit to make it fit me a little more personally.
When we say we can’t do something because we don’t feel well, put yourself in our shoes by using the examples of our symptoms below—
What You Can do To Understand Painful Heavy Legs… Apply tightly 20 lb ankle weights and 15 lb thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?
Painful Feet… Put equal or unequal amounts of small pebbles in each shoe then take a walk.
Loss of Feeling in Hands and/or Arms… Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful, stab yourself in the arm.
Loss of Feeling in Feet and/or Legs… Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk.
TN (Trigeminal Neuralgia). ..Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw, preferably daily.
Uncontrollable Itching… Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
Tingling… Stick your finger in an electrical socket – preferably wet.
Tight Banded Feeling… Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day.
Shots… Fill one of our spare needles with saline solution and give yourself a shot every time we do our shot.
Side Effects From the Shot… Bang your head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink. mE PERSONALLY, NO LONGER TAKE THE SHOTS. Tried them all and they made things worse. So Dr’s have me on a “wait and see basis” How would you like living like that? We don’t know when it will happen, we cant stop it, so we will deal with it when it comes…
Trouble Lifting Arms… Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house. Add Cushings on top, then even drying your hair with the towel or drying off after the shower exahsts you.
Spasticity… Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
Poor Hearing/Buzzing in Ears…Put a bee in each ear and then put a plug in each one…bzzzzzzzzzzzzzzzzzz , or get the woosh woosh, pattern over and over in your head.
Balance and Walking Problems… Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now try and walk.
Urgently Needing to Pee… We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you. Oh and carry change of clothes and wear what feels like a mini diaper 24/7 too, see how sexy you feel. (Boy, is THIS one extremely true!)
Bizarre and Inexplicable Sensations… Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day.
Pins and Needles… Stab yourself repeatedly with needles all over your body or better yet….Get a large tattoo.
Dizziness (Vertigo)… Get on a gently rocking boat all day and all night and take several walks around the deck.
Fatigue… Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel.
Bowel Problems… Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.
Burning Feeling… Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course. Usually on your feet.
Intention Tremor… Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky?
Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’s)… Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in. Right smack between your shoulder blades. Get zapped even reaching over to unlock the door on the inside of the car.
Vision Problems (Optic Neuritis)… Smear vaseline on glasses and then wear them to read the newspaper.
Memory Issues… Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things. This is the worst, drive, forget where your going, or where your at.. Scarey feeling.
Foot Drop… Wear one swim fin and take about a 1/2 mile walk.
Depression… Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one of the animals and when you come back the next day you come in while they are putting her/him asleep.
Fear… Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day.
Swallowing… Try swallowing the hottest chili pepper you can find.
Heat Intolerance or Feeling Hot When it’s Really Not… You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms – welcome to our world.
And Finally… After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer. Or just lock yourself away in a room, and no one knows your gone.
Because ” You don’t look sick” we get all sorts of funny looks if we park in the Blue parking spaces. Or hear about a magic type of vitamin someone found on the Internet because cousin so n so used to be so bad off they were in a wheel chair, now they are running marathons. Or come up with some special way of eating by cutting out, any foods that are white, red, sweet or processed. Because someone always knows someone who “used” to have MS but now they seem like they are cured.
Yes this is a slightly exaggerated look at how some of us feel, with a little humour thrown in. The truth of the matter is there are no cookie cutter symptoms that everyone either has or doesnt have. And just because we have one group of symptoms today, that doesnt mean they will be exactly the same tommorrow, or even in the next few hours. These are all dependant upon where our lesions or scars IE: Multiple Scarosis (sclerosis) are loacted at and whether or not they are flaring up at the time. Each individual has to experiment through trial and error what works or does not work for you. Don’t just sit around and wait to be “fixed”. No,I am not saying we can cure ourselves. But, what I am saying, is that you cannot just settle with it. You find ways of making things easier on you, realize what aggrivates things and stay away from them. Don’t just assume that because something either did or did not work for someone else, doesn’t mean it won’t work for you. It takes time to realize what it is your body is doing, and learn to find ways to work along with it. For me, cognative skills are a real challenge for me. Many times I set off to drive somewhere I have been a hundred times, only to find myself either lost or pulled off on the side of the road trying remember where in the heck I was going. Multi tasking, of that I can just forget. One thing at a time and that has to be done by keeping lists everywhere or by using a Palm Pilot. (My kids called that Mama’s Brain) I can’t tell you how many things get started or at least thought about , then pushed aside only to take on something else that never gets completed either. Luckily, I have a very patient and understanding Family. Although, I will say my Daughter tried numerous times to pull one over on my by saying that she had either already “told” me or “asked” to do something and that I just forgot about it. “I did tell you Mom, you know how your MS makes you forget sometimes”… Man oh Man did that make me hot. I can laugh at it now, but surely did not find it amusing at the time.