My MSAA Community

Steroid Treatment ~ No Change in Symptoms

Hi Everyone,

I was diagnosed w/MS on Jan 6th. On Jan 6-8 I attended my local hospital where I did steroid (methylprednisolone) treatment.

My symptoms (numbness/tingling/burning/weakness) in my arms/legs/torso have not improve at all. In fact, I feel as though some of my symptoms have worsened.

Would I have felt the benefits of the steroid treatment by now?

I am not on a treatment plan as yet b/c I am being referred to a different neurologist who specializes in MS.

These symptoms don't feel good at all and as I said, they seem to be getting worse. I don't know what to do or how to handle it. Will I ever have relief or is this a negative sign of what to come ... Ugh ...

Thank you,

Carrie

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Sorry to hear you're not feeling better yet Carrie😟. I always find that the IV steroids make me feel worse before making me feel better. Usually about 4-6 weeks after finishing the IVs, I notice a positive change. I'm sorry to hear about the diagnosis. I hope you can start a DMT soon. That's the key to slowing the progression if you have RRMS. Good luck!!! You'll get a lot of support here.

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Thank you Juleigh21 ... knowing that it could take 4-6 wks before the IV therapy kicks in, gives me some hope. What does DMT stand for? Appreciate your message!

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Disease modifying therapy. One of the 13 meds used to slow progression of MS.

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Thanks Juleigh21 ... other than IV therapy, are there oth drugs that have been successful helping w/the symptoms that people experience?

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Gabapentin helps with my sensory nerve pain (numbness, tingling, pins/needles etc.). Baclofen and Tizanidine help me with spasms and stiffness. Diazepam helps me when I get severe spasms in my back (MS hug). Carbamazepine helps my Trigeminal Neuralgia pain (severe spasms in the face). I've also had injections into my spine and head to control pain.

DMT- I started on Copaxone and then developed an allergy to it. Went to Tecfidera but it did not help me with my walking. Now I'm on Tysabri.

These are the meds that I have taken since this journey with MS started. There are many other meds that other MS patients use.

Carrie, ask your docs- including PCP- for relief. You shouldn't have to suffer! I'm thinking about you!

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Hi Daring_Greatly lm so sorry your not feeling any better 😞 When do you go see your new Neurologists? Have you had your spinal tap yet?

What's the difference between the methylprednisone steroids and the solumedrol? Does anyone know? erash my go to nurse💝🌠

I really hope that you feel better soon Carrie! We all know how scary this can be, as we have all been there one way or another. Do you have a good support system? Are you taking care of yourself?

Jes🌠

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Jesmcd2 both steroids. Mode of delivery (by mouth vs intravenous ) , potency and duration of action are the biggest difference. Solumedrol intravenous, more potent and longer duration. Methyl prednisone can be and is often by mouth.

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Thank you @erash see l know what Prednisone is, l just didn't know it had the "Methyl" in front of it. 😅 I have been on both ugh. Still have the IV pole, what are you supposed to do with that anyway?😕

How are you doing Daring_Greatly ? Any changes yet?

Jes🌠

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Jesmcd2,

Hat/clothes rack?

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Jesmcd2 IV pole uses: hanging plants, hat rack, macrame pole, wind chime support...

I'm sure I have one somewhere I will never remember in my garage 😉

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Awesome ideas!!! Love it erash and greaterexp ! HEY!! l can use it this summer for humming bird feeders!😁🌠!

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Jesmcd2 ...no changes, just feeling crappy ... I hope whatever treatment I start, makes me feel much better!

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Hi Jesmcd2 ... I have the spinal Tuesday morning. No appointment yet w/the new neurologist, I'm assuming he will want to see me after all the tests have been done.

I don't know anything about the steroids, this is all so new.

I do have a good support system and also feel I"m taking good care of myself, it's still rough though, this feeling unwell doesn't fit with my lifestyle :)

Thanks for the message Jes :)

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Carrie, I've had 2 lumbar punctures. Follow all the directions and you'll breeze right through. The LPs were the deciding factors in my MS diagnosis. Not sure why the MRIs weren't enough😡. Good Luck

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Daring_Greatly MS has its own lifestyle lm afraid. I wake up in the morning and make sure everything is still working, before l move anymore. Then, l see if it's a cane, or no cane day... It never ends, and always changes.

Good luck with your spinal tomorrow, l never had 1, but several people have an can give you hints about it.

Jes🌠

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Hello Carrie, hope you feel better soon. I really don't know about getting methylprednisone, I always was put on Solumedrol and I felt better after being on it for four days. The steroids reduce the inflammation in the body which helps bring the body back to normal. Hope this reply helps.

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I am in the same boat....same type of symptoms. I was on solumedrol for about 4 days, and haven't really seen much improvement. I'm hoping for some soon!

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Sadieschafer ... I'm sorry you're in the same boat. How have you been feeling? Carrie

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I am doing ok, just was hoping to be better by now. Still have numbness and weakness in both legs, feet, etc.

was sent home from hospital 5 days ago....and was hoping the steroids would kick in more than they have. I feel like I'm just getting semi used to it and not really seeing improvements.

How is all with you? Hopefully good :)

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When I came out of remission this past Feb 2015 for the 1st time I did the IV but then afterwards I started taking Tecfidera. Hopefully U can see the new neuro so they can get u started on something

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Carrie, I think everyone reacts differently to steroids at different points of their disease. I have had relapses where they helped tremendously,usually about four days after finishing. I thought that was my "norm". But I have been in a wicked relapse since August, begged, literally begged my neuro, he told me they wouldn't help me. He finally gave me oral and he was right and I had to eat crow and apologize. So my point is...give it time, hopefully you will feel a positive change, but remember everyone reacts differently depending on what their body is doing. Praying all the best for you. With love, Kelly

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Amore55 ... thank you for your message. Have you been successful in finding a med that helps with your symptoms? Carrie

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Carrie, I am in between neuros right now. I see my present one on February 14. My new one can't get me in until April or may. I hope the appointment on the 14th will bring me some results. How are you feeling? Let me know, I truly care and hope for the best for you. 😊 Hope we can stay in touch, it's fun to get to know more people. With love, Kelly xx

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Amore55 ...Thank you for your thoughts. I hope that your app't brings you some positive results. I'm not feeling well. I have significant numbness/weakness in my arms & legs. I'm not on any meds at the moment. I did the IV therapy Jan 6, 7 & 8 but the steroid treatment hasn't improved my symptoms. I'm wondering if this is my "baseline." I really don't know a lot, this is a steep learning curve for me. Curious if I'll ever feel "better" again ... Thanks Kelly, I would like to stay in touch for sure! Please let me know what you find out & how you're doing! Carrie

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Carrie, it sounds like we are kind of in the same boat. When I spoke to my neuro a couple of weeks ago, she told me to stop hoping my relapse would gt better. She said she thinks I have probably moved to secondary ms and as you said this is just my new baseline I guess I will find out more on the 14th. I'm so sorry that you feel so lousy. Do you work or are you on disability? And are you planning on getting on a med? I was on Tysabri for six years, but the PML risk got too great and had to get off it. I tried Copaxone, but it made me sicker than I already am. So like you I'm off all meds for now. When do you see your neuro again? Is he/she good? I will be praying that you feel better, and I don't just say that. I truly will pray for you morning and night. I'm not super religious or anything, but I KNOW that God answers our prayers. Let me know how you feel tomorrow if you want.😆Love, Kelly xx

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I have the same symptoms today I did after my second MS set of symptoms 2013 from my waist down to my feet. I didn't do the steroid treatment and didn't start MS medicine for a year waited until my body reset . Started on treatment 2015 and stopped one year later 2016. All symptoms are still the same point as the were after things settled down without Ms meds or symptom meds,

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Here is some helpful information on steroids;

"Steroids speed the healing of a relapse, but they don’t create healing that wouldn’t have occurred otherwise," Fox says. So you’ll recover just as much -- or as little -- without the steroids as you would with them.

Take care of yourself during a flare-up. "If it feels like you need more sleep, get more sleep," Fox says. But don't remain completely still. While the flare may limit your activities, you can -- and should -- still go about your daily business as much as possible. Maintain a healthy lifestyle, and pay attention to the signals your body is sending.

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hello I'm so sorry you feel so bad I was in such a mess until my doctor started my betaseron. now I'm back walking and feeling so much better. I had a flare up two weeks ago went and got steroids it helped me I went and got more yesterday I feel so much better. I'm praying you get treatment soon and for some relief I don't know if your woman of faith but it helps me cause I know God is gonna fix it don't how or when but he said to be true to his word and I am I live on faith I get weak sometimes but he still keep right on blessing me. I'm praying for you.

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