New to this...but very scared

[Sadieschafer]

I am new hear and looking for some support, anything is appreciated!! I am currently having extreme weakness/stiffness in my legs and feet. I am also a extremely tired! Years ago doctors thought I may have MS, but was never confirmed. Now this happened. They are treating it as a relapse. I went to the dr and they gave me an oral dose of steroids a few days worth- but I have not seem improvements yet. Has anyone had this happen? Is there any hope? I also have the feeling that I need to have a bowel movement (embarrassing) but when I do have one, the feeling doesn't go away....so strange. Any thoughts on any of these things I would appreciate more than you know! Thank you!!

[jimeka]

Hi Sadie, hi and I hope you get the answers to your questions. Most of us on here have or do experience very heavy legs, mine often feel as though I am dragging 2 blocks of concrete around with me and it makes the balance worse. You will find someone on here can relate to what you are experiencing so just keep asking until you get an answer. We all try to help in any way we can, sorry but I don't know anything about medication or steroids, as I have PPMS so I am waiting for the new wonder drug to be available. Nice to meet you, blessings Jimeka

[Sadieschafer in reply to jimeka]

Thank you for responding! I appreciate the support!

[Fee09]

You are having something that ahve dealt with. The feeling is what we call the MS hug. You still feel tight and pressure from muscle tightness. I use laxatives when it happens even when I can go because it seems to make it feel better. Have you had a second opion on you original diagnosis or any other treatment?

[Sadieschafer in reply to Fee09]

Thank you- did it seem to last a long time? I guess I thought the ms hug was in the stomach area...

[Hidden in reply to Sadieschafer]

Me too , that was interesting that fee09 thought the hug was in the bowel area?? Mine is in the chest area...you learn something new everyday and I have had MS for over 40 years.

[Sadieschafer]

I have taken the steroids for 5 days. About 8 years ago I had double vision- they did do an MRI- but nothing conclusive. I have not taken any drugs for it thus far...

[Dpjinx]

This is a GREAT place for support. I haven't been here long but I do spend a lot of time here everyday just reading. My local MS support groups was not support really. We got together (4 of us) , eat brownies that one of the gals would make and then go home I belong to a quilt group that meets once a week and they are my support. Such great gals and friends. I too have problems with my legs and feet I recently started with a new therapist and she has me in a pool. I was Leary at first-afraid it would be too warm for me- it's a therapeutic pool-it was great Made me a little sore but felt great. Hope you find some answers here. I sure enjoy reading the posts, the replies. Hope you'll find some support here. You're not alone here Welcome

[dmaskal1]

Hello Sadieschafer, when I was diagnosed with progressive MS in 1987 the first thing they gave me was prednisone which helped greatly with my fatigue. But I was only prescribed enough for a few days. There were not any disease modifying drugs at the time so I was prescribed a dug similar to speed to help with the fatigue. Later my neurologist prescribed Copaxone which I took for several years. The I moved and found a neurologist specializing in the treatment of MS patients who prescribed Avonex which I took for several years. After my neurologist and I had been evaluating disease modifying therapies to treat my decreased cognitive abilities we decided Tysabri might do it. I've been receiving Tysabri infusions now for the past six years and I'm happy to say I believe it helps with my cognitive abilities and fatigue for a few weeks after infusion. In the fourth week after infusion the effects of Tysabri have worn off and I'm looking forward to my next infusion. So make sure you work with your MS-neurologist to find the disease modifying drug that's best for you.

During the time I was taking Copaxone or Avonex I developed double vision which can be a symptom of MS and my neuro-ophthalmologist corrected my double vision with prism glasses. Ever since I was diagnosed I have had bladder and bowel urgency problems which were corrected by drugs prescribed by my urologist. So you may encounter a new condition caused by the MS for which you may need to see another medical professional to which your MS-neurologist will refer you.

[Juleigh21 in reply to dmaskal1]

Hi dmaskal1! I've been on tysabri for a year now. I agree with you that the last week before an infusion is ROUGH. Glad to hear I'm not the only one!

[dmaskal1 in reply to Juleigh21]

Hi juleigh21, everyone in the infusion center here has experienced the same thing too. You are definitely not the only one.

[Hidden in reply to dmaskal1]

good, insightful advice

[dmaskal1 in reply to Hidden]

Thank you lindane!

[bavery207 in reply to dmaskal1]

@dmaskal1 I also have progressive MS and was told there were no meds for this. Do you find the ones you have tried really helped? When first dx I tried Rebif, but it messed up my blood work and we tried no others.

[dmaskal1 in reply to bavery207]

bravery2017 I don't think either Copaxone or Avonex did anything, bad or good, for me. Only Tysabri has helped me, but as I said it only helped for the first three weeks after infusion. The fourth week I become more fatigued and experience more brain fog. So after the court week I know I'm ready for another infusion. Neither Copaxone or Avonex cleared the brain fog or relieved the fatigue for me.

[angelite]

Hi Sadie,

I can relate to your leg issues. I do get extreme weakness in relapse, followed by a return of my 'normal' stiffness as I begin to recover. I often get the pressure of feeling like I need to urinate but don't really need to. Please don't panic - this is not the finished product and I am confident you will see some improvement. In the meantime, try to relax and only do the necessary things. If you are tired, sleep. Sleep promotes healing.

Try using chairs in bathroom for necessary personal care and kitchen for whatever washing up/cooking you need to do - it saves on leg power and energy and is safer if you are struggling. You might want to consider a cane or even two to help support your legs as you walk. Do you have anyone else at home to help you ? I'm so sorry this has happened but please know we will all do our best to help you through this. Angela x

[CalfeeChick CommunityAmbassador]

You have come to the right place. We've all gone through many of the same symptoms and fears. Me personally, I'm just 6 1/2 months into having MS. I had two rounds of oral steroids when I first went numb. They reduced the intensity of the symptoms. I also have bowel problems. I get some relief by taking fiber supplements and stool softeners at night. Excuse my language, I call it "butt labor. " because that's how it feels.

Don't hesitate to ask questions, there are many great people here with a wealth of knowledge and experience. Hope you can find some comfort here knowing we're all having one symptom or another 24 hours of the day. Lynn

[Juleigh21]

Welcome Sadie! Usually when I relapse my pain turns to complete numbness and my legs feel like I'm trying to move tree trunks. Oral steroids never work for me when I'm having a serious relapse. 3 to 5 days of solumedrol usually does the trick. I hate it but I acknowledge that it works. Good luck Sadie!

[Sadieschafer in reply to Juleigh21]

I had the IV years ago when I had optic nueritis, but it was not offered this time- just the oral...so far it has not helped - 4 days in

[erash in reply to Juleigh21]

Sadieschafer i was also thinking u might do better with INTRAVENOUS Solumedrol

Hope u feel better!

[Hidden in reply to Juleigh21]

Solumedrol/with taper really helped me so much over the years for my numerous MS relapses. One time I went numb and paralyzed from the breast tips down (scary and shocking), they put me in the hospital with Solumedrol drip and I was moving the very next day-hooray, that made a believer out of me. One neurologist told me that it is very important to act rapidly with Solumedrol to prevent the massive scar tissue of a relapse-but there are so many 'ideas' out there, who knows? I highly recommend the MS ABC-T Drugs for all of the new MSers.

[dmaskal1 in reply to Hidden]

What are the MS ABC-T Drugs lindance?

[Sadieschafer in reply to Hidden]

Can I ask how long it was before you felt semi- normal again?

[WAshingtongirl]

Hi Sadieschafer , it sounds as though you are being treated for an MS relapse without the formal diagnosis. Am I right? I see that starlight5 already asked about MRIs. And she (I hope I got that right) also mentioned a neuro specializing in MS. I can't agree more.

If you feel the oral steroids are not working, call your doctor back. You may need solumedrol. And I hope further testing is done. If your current doctor doesn't mention planning to do so, I would look for another neurologist.

If you have MS, it can affect your bowels. But other things can too. (I've had an enterocele and rectocele and they can cause pressure and problems with bowel evacuation.) Did you mention the bowel issue to your doctor? Even though my neuro has diagnosed me with neurogenic bladder/bowels, she still wanted a gastroenterologist to make sure I didn't have a bowel blockage prior to starting me on new treatment to help with my chronic constipation.

I hope your doctor is able to answer all of your questions and address your concerns. It took 9 years for me to be diagnosed, two years after that to be undiagnosed, then diagnosed again at a MS Clinic, where I was told I'd had it all along. So I have a real heart for those of you still waiting to find out if it is or isn't MS.

I hope you feel better soon, and that you get your questions answered. 💕

[Hidden in reply to WAshingtongirl]

It took them, the doctors-since MRI use was in infancy, close to 8 years to give me an MS diagnosis. The doctors, back then, thought it was a death sentence and were very reluctant to tell their patients. Well, they were wrong, I have lived over 40 years with MS, raised 4 healthy children to adulthood, have 11 grandchildren, and owned and operated a successful business for 25 years. Just saying.

[WAshingtongirl in reply to Hidden]

Hidden , your post is an encouragement to all those with a new diagnosis or still in limbo. You are a veteran! I've lived with it for 25yrs and also feel very fortunate.

[CalfeeChick CommunityAmbassador in reply to WAshingtongirl]

You are pretty special yourself Tutu!

[CalfeeChick CommunityAmbassador in reply to Hidden]

Wow, lindance, you are an inspiration to me. I'm glad you posted that. I believe I'm in my first ever relapse and I certainly needed the lift your post gave me!

[Shantami in reply to Hidden]

Love your reply!!

[Sadieschafer in reply to Hidden]

Thank you for the positive thoughts! I have two little boys, and all I want is to care for them

[Jesmcd2 CommunityAmbassador]

Hi Sadieschafer l can't say much more than what this Wonderful Group of People have already said, besides my own hello.😊

I would suggest you give the Prednisone a couple of days to kick in, BUT IM NOT A DR!! If it's all still bothering you, call your Neurologists. Don't wait. The Drs are there for US. Not the other way around.☺

What testing are they doing for your DX? I will be dx'ed 2 yrs in Mar. I say as l try not to be sick. It's gonna be a rough one for me😞

I hope you feel better soon!! And please feel free to jump in at anytime!😊

~Helpfull Hint~ If you put an @ in front of the person who your addressing they will get a notice from you. IE.... @ jesmcd2 * With No Spaces*

Jes🌠

[Sadieschafer in reply to Jesmcd2]

Thank you- my doctor wasn't really listening when I said it wasn't working after a week. I came into the ER last night, and the neurologist here started solumedrol. Hoping for some results. Thank you

[Hidden]

Try (though I know it is difficult) not to let fear get hold of you. Keep working with your doctor whom I assume is a Neurologist (MS specialist is best) to rule out MS or other possible diseases/disorders. Document your symptoms, I know some may seem insignificant but write them down, they could all be parts to the puzzle to the 'knowledgeable eye' of a medical diagnostician. And yes I have had all of your symptoms, sorry to say, but I had 5 days of IV steroids and then the pill form taper. Hugs and keep the faith, you will get through this, whatever it is.

[Dpjinx]

Greatest support Found here.

[CalfeeChick CommunityAmbassador]

Hi, I was just re-reading all these posts and it never fails to fascinate me how many of us have alike symptoms and then opposite symptoms. I have had the bowel problems since I went numb last summer. So I am learning allot! I thought the MS Hug was something in the rib areas. I went numb in the right back ribcage and within days it worked itself around to the right front of my ribcage. It incompasses my right side from ribs to lower abdomen. It has never left, just worsens at night when I try to rest, then feels like my ribs and lung want to collapse. I call it my MS Bear Hug.

[Fancy1959]

Sadieschafer, it's Fancy1959 Welcoming you to this awesome chat room. You have found a safe place to come Sadie to voice your concerns, ask questions, and talk to someone who truly understands what you are going through. At one point or another every single person diagnosed with MS has been scared to death whether they want to admit to it or not. This chat room is full of the kindest, most caring, and compassionate people I have ever met.

MS leads each of us down a slightly different winding path full of potholes and detours. Although our paths are different they parallel one another and we tend to have similar issues and symptoms along the way. That is why the members of this chat room have unique qualifications to understand what other people with MS are going through.

Sadie there is always hope to conquer this monster we call MS. We are at a point in the history of MS were never before have there been such a huge influx of new therapiès being developod. Once we can figure out what causes MS, we can cure it. Researchers are getting closer and closer to finding out that cause. Hopefully sometime this spring, I believe the approval date has been pushed back to the end of March, there is a new therapy coming that is actually showing signs of regrowing mylin. When that happens we will have a huge breakthrough in MS and it can actually be looked upon as a game changer for so many of us.

We're really givng you a lot of information quick so to the last question for you. Are you happy with your neurologist? Does he or she takes the time to explain and answer all your questions in a way that you can understand. Does your neurologist listen to your worries and concerns instead of rushing in and out of your visit and leaving half your questions untouched. If the answered yes to any of these perhaps it's time to look for a different neurologist.

Please remember we are only a post away if you need.us. We are here to listen and to help whenever we can. Take care of yourself and don't overdo it right now untill you get everything settled with your neurologist. In the meantime why don't you pull up the post I wrote that's titled "MS things to avoid." It will help you and give you insights into the traps that MS will throw in your path when you are newly diagnosed for you to stumble over. In the meantime I would like you to remember that together we are stronger! Grab hold of our hands and hang on and we'll make sure you don't fall behind or get lost. After all from here on out Sadie you are part of our extended family!

[Sadieschafer in reply to Fancy1959]

Thank you so much for the support! My neurologist is ok I think, but my primary care I'm a little apprehensive about. Just frustrating..