Hey Everyone
Hey Everyone
I am 34 and I was diagnosed with MS in April. I have already tried Solumedrol and intravenous treatments for three days straight which was tough. The first day was horrible they dripped the steroid for a full hour and the side effects hit me like a pile of bricks. The disgusting metallic taste in my mouth was terrible. I also experienced the dizziness. That first night I couldn't sleep a wink and to make matters work I had terrible cramping in my muscles. I started to do some reading and learned that I could ask them to drip it slower, which helped a lot. I had them drip it for 90 minutes instead of the hour and that helped with the dizziness. I also took a bad full of sucking candies and that helped with the taste. After that first 3 days of Solumedrol the specialist said that it would cover me for 6-8 weeks. I only felt relief from my symptoms for like a month- that's it. Then she started me on Tysabri which I thought would be the best end-all treatment for me. I figured once a month in the hospital wouldn't be so bad. So I got all of my JC virus bloodwork done and it turns out that I was negative initially so we started the treatment. I did that for like 3 months and then we found out that it was raising my liver enzymes so they took me off of it and had me on once a month treatments of Solumedrol for just the one day. So this month I started to experience terrible pain in my legs, a heaviness and a pain from my butt right down the leg to my heel. I spoke to the specialist about it and she sent me for a 3 day treatment of steroids. It sucks. I gotta admit that after only having MS for 9 months- I'm so tired of it already. The first night of steroids, I felt the pain in my legs- I hated that. Its tough to run around a two year old with pain like that- not to mention drive. It really is frustrating to not be able to have your normal routine. It makes me so upset to have to change my plans and find other ways to try to get stuff done with they huge impairment. The second day, I came home and felt so tired. Just so completely drained. I didn't want to eat anything because the taste in mouth was so gross. It feels like you are sucking on quarters all night. It took forever to get it back. Then the last day I went, I dragged myself there and attempted to eat from the meal tray they gave me, but after the first 20 mins of the drip - I was done with that too. I tried to take some motrin for the muscle aches and for the sleeplessness, but nothing seems to help. I took 2 Tylenol PMs too and I only slept until 2 am. Its so frustrating. I gotta say that I never imagined it being so difficult. Since its not an illness that anyone can see its like a lot of people seem to act like I'm being overdramatic or making it up. There are good days and there are bad days. There are days when I wake up feeling normal and then there are days when I wake up with 20% left on my battery- I wake up tired and I go to bed drained. Working a full time job and having a house to run has proven very difficult. I definitely needed to turn to a blog and read what others are going through. I need the support.
Re: Hey Everyone
Hi,
They have really hit you hard up front with medications. It's worth reading a basic note on Solumedrol - https://www.drugs.com/pro/solu-medrol.html . It is not a harmless medication. Read the sections on precautions and drug interactions.
If you have underlying infections or you take medications or have conditions that don't go well with that treatment you will feel awful.
Adding other medications may not be as good as just backing off everything all together. After the initial treatment ended they should have just stepped back and observed what happened. it doesn't sound as though that is what they did.
I have been down this path of being medicated too aggressively and the the only answer is to demand they take you off everything as the current treatment is making you worse. Then you get a chance to rebase without your metabolism being shoved all over the place. You need a proper plan and it sounds like you may be overmedicated. If you try this and you feel better then ask the people here what their experiences are and continue to read extensively before you add something.
There are plenty of people willing to help and share experiences but I don't like whats happening to you right now.
Regards,
They have really hit you hard up front with medications. It's worth reading a basic note on Solumedrol - https://www.drugs.com/pro/solu-medrol.html . It is not a harmless medication. Read the sections on precautions and drug interactions.
If you have underlying infections or you take medications or have conditions that don't go well with that treatment you will feel awful.
Adding other medications may not be as good as just backing off everything all together. After the initial treatment ended they should have just stepped back and observed what happened. it doesn't sound as though that is what they did.
I have been down this path of being medicated too aggressively and the the only answer is to demand they take you off everything as the current treatment is making you worse. Then you get a chance to rebase without your metabolism being shoved all over the place. You need a proper plan and it sounds like you may be overmedicated. If you try this and you feel better then ask the people here what their experiences are and continue to read extensively before you add something.
There are plenty of people willing to help and share experiences but I don't like whats happening to you right now.
Regards,
Last edited by Scott1 on Sun Nov 20, 2016 12:01 pm, edited 1 time in total.
Re: Hey Everyone
Hi Family Elder
I wish there was a quick way to deal with this and stay as mobile and as functional as I have. I feel like I'm quickly going down hill. I never felt so helpless before. Then they throw all of this medical info at you and expect you to pick and make a decision. I definitely didn't want to be on injections. She said that they work great, but I am not a fan of injecting myself.
The whole process is overwhelming and when you youtube something like this it always makes me more scared. The amount of time it takes up in adjusting physically to all of the side effects of each drug in conjunction with the mood swings and the fluctuation in energy, depression and fatigue are enormous.
And since MS seems to be an illness that not many people completely understand. Complaining often doesn't help. People think that you make it up or that everything is an overexageration. My mom initially said that the more I read and try to educate myself on the topic- the more I would want to blame everything I have ever experienced on MS.
Have any idea how many years I had experienced the extreme sensitivity in my extremities. When everyone has on a sweater, I sleep with socks, leggings, sweaters and a jacket. The tip of my nose, my fingers and toes all freezing, and in the summer I have to wake up in the middle of the night just to jump into the shower and run super cold water on my feet just so I can sleep.
Never thought that it could be MS........
I wish there was a quick way to deal with this and stay as mobile and as functional as I have. I feel like I'm quickly going down hill. I never felt so helpless before. Then they throw all of this medical info at you and expect you to pick and make a decision. I definitely didn't want to be on injections. She said that they work great, but I am not a fan of injecting myself.
The whole process is overwhelming and when you youtube something like this it always makes me more scared. The amount of time it takes up in adjusting physically to all of the side effects of each drug in conjunction with the mood swings and the fluctuation in energy, depression and fatigue are enormous.
And since MS seems to be an illness that not many people completely understand. Complaining often doesn't help. People think that you make it up or that everything is an overexageration. My mom initially said that the more I read and try to educate myself on the topic- the more I would want to blame everything I have ever experienced on MS.
Have any idea how many years I had experienced the extreme sensitivity in my extremities. When everyone has on a sweater, I sleep with socks, leggings, sweaters and a jacket. The tip of my nose, my fingers and toes all freezing, and in the summer I have to wake up in the middle of the night just to jump into the shower and run super cold water on my feet just so I can sleep.
Never thought that it could be MS........
Re: Hey Everyone
Hello mia72797,
Quick? Unfortunately, MS requires patience on so many different levels. Staying mobile? I am very opinionated on this topic. Exercise is so important as well as maintaining your core body strength. When exercising with MS you will need to start out very slow and increase even slower.
When I was diagnosed I had lost the majority of my mobility, numb from the waist down and bilateral leg weakness (among many other symptoms) . My Neurologist told me the best thing I could do is walk. He saw my expression of shock and told me "I know you can barely walk but walking will help. I did what he recommended. I started out taking multiple walk around the inside of my home (that's all I could do at that point). Little by little I started adding more distance; halfway up the driveway and back then the entire distance of the driveway and back. From there I started to walk beyond my home. It took me a year to finally reach my maximum distance of 2 miles. I have always exercised although what I do for exercise changes. I currently use an Elliptical, weight train with a 4 station weight machine and exercises I have learned from working with Physical Therapists. This process is not easy or quick but well worth it. In the past I used a treadmill and Bands (Yoga, Therabands).
Exercise can help with some MS symptoms such as pain, spasticity, mobility, and fatigue.
There are different ways to treat this disease; exercise as I explained above, symptom management medications, Disease Modifying Drugs (DMDs) and a healthy diet. Steroids are used for exacerbations (relapse, attack, flare-up) and not for symptom management. Steroids will not change anything about your journey with MS, steroids might resolve an exacerbation sooner but they might not. Many times steroids are a temporary solution to an ongoing problem. Steroids are not always necessary as an exacerbation can resolve without steroids.
As Scott1 mentioned, steroids are not harmless. Steroids do come with short term as well as long term side effects.
I wish there was a quick way to deal with this and stay as mobile and as functional as I have
Quick? Unfortunately, MS requires patience on so many different levels. Staying mobile? I am very opinionated on this topic. Exercise is so important as well as maintaining your core body strength. When exercising with MS you will need to start out very slow and increase even slower.
When I was diagnosed I had lost the majority of my mobility, numb from the waist down and bilateral leg weakness (among many other symptoms) . My Neurologist told me the best thing I could do is walk. He saw my expression of shock and told me "I know you can barely walk but walking will help. I did what he recommended. I started out taking multiple walk around the inside of my home (that's all I could do at that point). Little by little I started adding more distance; halfway up the driveway and back then the entire distance of the driveway and back. From there I started to walk beyond my home. It took me a year to finally reach my maximum distance of 2 miles. I have always exercised although what I do for exercise changes. I currently use an Elliptical, weight train with a 4 station weight machine and exercises I have learned from working with Physical Therapists. This process is not easy or quick but well worth it. In the past I used a treadmill and Bands (Yoga, Therabands).
Exercise can help with some MS symptoms such as pain, spasticity, mobility, and fatigue.
There are different ways to treat this disease; exercise as I explained above, symptom management medications, Disease Modifying Drugs (DMDs) and a healthy diet. Steroids are used for exacerbations (relapse, attack, flare-up) and not for symptom management. Steroids will not change anything about your journey with MS, steroids might resolve an exacerbation sooner but they might not. Many times steroids are a temporary solution to an ongoing problem. Steroids are not always necessary as an exacerbation can resolve without steroids.
As Scott1 mentioned, steroids are not harmless. Steroids do come with short term as well as long term side effects.
Re: Hey Everyone
thanks for the quick response, I will try to have more patience...
Re: Hey Everyone
Hi,
Those problems with temperature are most likely to do with how well your blood vessels dilate. There are a number of ways to deal with that but until you have sorted out your current issues I am unlikely to suggest anything except diet as you don't need to compound the effects of your medication by just adding more things to it.
I would be going to your prescribing physician and telling her that her that the medication is making you feel worse and getting her advice on how to come of it. Don't swap straight away to something else just get a chance to see what being on nothing at all for a month feels like.
Regards,
Those problems with temperature are most likely to do with how well your blood vessels dilate. There are a number of ways to deal with that but until you have sorted out your current issues I am unlikely to suggest anything except diet as you don't need to compound the effects of your medication by just adding more things to it.
I would be going to your prescribing physician and telling her that her that the medication is making you feel worse and getting her advice on how to come of it. Don't swap straight away to something else just get a chance to see what being on nothing at all for a month feels like.
Regards,
-
lyndacarol
- Family Elder
- Posts: 3394
- Joined: Thu Dec 22, 2005 3:00 pm
- Contact:
Re: Hey Everyone
Welcome to ThisIsMS, mia72797.mia72797 wrote:I am 34 and I was diagnosed with MS in April. I have already tried Solumedrol and intravenous treatments for three days straight which was tough. The first day was horrible they dripped the steroid for a full hour and the side effects hit me like a pile of bricks. The disgusting metallic taste in my mouth was terrible. I also experienced the dizziness. That first night I couldn't sleep a wink and to make matters work I had terrible cramping in my muscles. I started to do some reading and learned that I could ask them to drip it slower, which helped a lot. I had them drip it for 90 minutes instead of the hour and that helped with the dizziness. I also took a bad full of sucking candies and that helped with the taste. After that first 3 days of Solumedrol the specialist said that it would cover me for 6-8 weeks. I only felt relief from my symptoms for like a month- that's it. Then she started me on Tysabri which I thought would be the best end-all treatment for me. I figured once a month in the hospital wouldn't be so bad. So I got all of my JC virus bloodwork done and it turns out that I was negative initially so we started the treatment. I did that for like 3 months and then we found out that it was raising my liver enzymes so they took me off of it and had me on once a month treatments of Solumedrol for just the one day. So this month I started to experience terrible pain in my legs, a heaviness and a pain from my butt right down the leg to my heel. I spoke to the specialist about it and she sent me for a 3 day treatment of steroids. It sucks. I gotta admit that after only having MS for 9 months- I'm so tired of it already. The first night of steroids, I felt the pain in my legs- I hated that. Its tough to run around a two year old with pain like that- not to mention drive. It really is frustrating to not be able to have your normal routine. It makes me so upset to have to change my plans and find other ways to try to get stuff done with they huge impairment. The second day, I came home and felt so tired. Just so completely drained. I didn't want to eat anything because the taste in mouth was so gross. It feels like you are sucking on quarters all night. It took forever to get it back. Then the last day I went, I dragged myself there and attempted to eat from the meal tray they gave me, but after the first 20 mins of the drip - I was done with that too. I tried to take some motrin for the muscle aches and for the sleeplessness, but nothing seems to help. I took 2 Tylenol PMs too and I only slept until 2 am. Its so frustrating. I gotta say that I never imagined it being so difficult. Since its not an illness that anyone can see its like a lot of people seem to act like I'm being overdramatic or making it up. There are good days and there are bad days. There are days when I wake up feeling normal and then there are days when I wake up with 20% left on my battery- I wake up tired and I go to bed drained. Working a full time job and having a house to run has proven very difficult. I definitely needed to turn to a blog and read what others are going through. I need the support.
I am curious to know about the process that led to your diagnosis of MS in April. From the onset of your symptoms, how long did it take for your doctors to decide that you had MS? What testing was done? Did you have blood tests for possible nutrient deficiencies? Vitamin D, B12, magnesium, zinc? These are often very low in people with MS.
If you did not have a vitamin D blood test called "25-Hydroxy D," ask your GP or family doctor to order one now (and ask for your own copy of the test results). Will you share the test results with us?
Vitamin D expert Dr. Michael Holick (Boston University) has said, "if you are on antiseizure medication, or on glucocorticoids, you're going to need more vitamin D because glucocorticoids and antiseizure medication increase the catabolism of 25-hydroxy vitamin D." Solu-Medrol is a glucocorticoid. And, by the way, high-dose use of steroids or long-term use of steroids can lead to diabetes.
Vitamin D deficiency can lead to all the same symptoms found with MS – according to GrassrootsHealth (http://www.grassrootshealth.net), serum vitamin D level should be at least 40-60 ng/mL.