In need of answers.. Relatable symptoms.. Anyone? Please. I'm desperate to find someone like me.

[Jcalderon95__]

All right I got diagnosed May 2016.. But I always knew I had something ever since I was 14 years old.. Any way my symptoms came back worse.i look down and get like electric shock feeling and I get muscle spasms that won't let me write or walk.. I get very stiff. My ms is in my spine . I have two big active lesions affecting my body. It's draining me.its affecting My marriage. My child.but husband is very supportive. He just likes to make fun of me and I hate it so bad .. And I my child because she's a baby and I can't carry her anymore due to my spasms and weakness .pleasr someone relate to me I want to know how you do it. And what kind of medication works for you please

[mayestas]

I am sorry for your distress, everybody is different. What medicines are you on I have you tried Baclofen

[Jcalderon95__ in reply to mayestas]

Tecfidera Gabapentin and tinzadine.. Only the Gabapentin seems to work

[Sukie427 in reply to Jcalderon95__]

The Tecfidera is a disease modifying therapy that helps to manage the disease by slowing down its progression. In other words, you hopefully won't develop any more lesions, or if you do, the process will be slowed. Tizanadine is a muscle relaxer--I take it for my neck or my SI joint as needed and it puts me to sleep immediately. The next day, I can barely move. Ask your doctor for something else, or try the CBD oil in small, increasing doses until you find the dose that's right for you. You need to get yourself into a position where you can manage your disease and then take charge of the rest of your life.

[heathera1 in reply to Jcalderon95__]

Gabapentin knocks me out! Dead to the world for at least 10 hours. Great that it does help you!

[jimeka]

Good morning, I only joined this site yesterday, I know what you are going through, I have RLS as well as ms and I too get the spasms but I have always put it down to the restless leg syndrome. People think they are helping you by making jokes about your condition but if the ms is affecting your state of mind, it feels as though they don't understand. What I have had to do is think how my condition affects the ones I love and now I am due to see a councillor to talk to someone completely out of the picture. Go to your doctor or your neurologist and ask if there is a medication that you can take with your baby. I hope that you can find the medical help you need. Cheers Jimeka

[Fancy1959]

Jcalderon95

Hi, I'm Fancy1959 and it

[Navynana4]

As for your spasms, Baclofen works well for spasticity. Surprised your dr. Hasn't prescribed that. That seems to be the go-to drug among us MSers. See if that will help!! God bless you!

[Jcalderon95__ in reply to Navynana4]

Well I'm on Gabapentin tinzadine and tecfidera nothing is really working besides Gabapentin .

[Royjr]

When I was diagnoses in 2003 I was having the same symptom of when I bend my neck i was getting a mild shock like feeling. After the MRI showed active lesions in spine and brain I was immediately put on 4 day steroid treatment to reduce the inflammation. My symptoms went away and that was the start of my journey with RR MS. I had active lesions in upper spine which caused the feeling in my neck and some in other areas of the spine which was causing gait and vertigo issues. Since then I learned and started eating better to control inflammation in my body along with exercise. I started with Avonex and now on Tysabri. My neurologist told me if the lesions are in the spine area it will effect my lower body and arms (stiffness and weakness) and if it's in the brain area it will effect my vision, cognitive and etc. Good luck to you and you're not alone.

[Jcalderon95__ in reply to Royjr]

Wow. So much in common.. I had trouble walking and vertigo when I was 14.. And your first symptoms is what I'm dealing with now .

[Fancy1959]

Oooppppsssss.....

Jcalderon95, I sent the previous post prematurely! Please talk to your neurologist. If you don't like what's happening to you try finding a different neurologist by asking around for Health Resources or talking to other patients in your area. I started out on Rebiff when I was originally diagnosed in 2013. My MS quickly progressed and was involving my eyes and optic nerves. My neurolgist immediately put me on steroids to stop the attack and switched my therapy to Tysabri. When Tecfidera became approved I was switched over to it. . One and a half years into my tecfidera therapy started to notice an increase in my disability. I had a bunch of new active lesions many scattered across my spine similar to yours. Boy aren't those fun. We can share combat stories about spinal leisons at a later date. I am still currently on Tysabrit and I am waiting for some promising new therapies to be approved early next year.

You need to sit your husband down and have a heart to heart talk with him about making fun of your problems. Somehow I don't really think that he is being very supportive of you when he makes fun of you. My husband gets angry with me when I can't do simple things that I used to. Remember they are both very scared of what is happening to us. And I think many men are simply not good at being nurturers. Have you done any physical therapy? It can really help to strengthen your muscles. Once you connect and work with a good PT get your husband to come along to physical therapy session with you. Your PT can become a good advocate for you. Just make sure you ask them if they would be willing to talk to him. Don't surprise them by bringing your husband along unannounced so to speak.

Boy, I am sorry I threw so much information at you all at once. Remember information is our friend and our most trusted weapon in our fight against this monster, MS. Remember we are here to talk to and we have big shoulders with moisture wicking material on them to cry on. Haha.Together we are stronger. Together we can beat this monster. Remember when MS knocks you down get back up. Fight on MS Warrior, fight on! Fancy1959. ☺💪😀

[Jcalderon95__ in reply to Fancy1959]

Thanks you. And it's true husband gets frustrated when it takes me 30 min to do something that normally would take one. I see he isn't the only one.

[Fancy1959 in reply to Fancy1959]

Jcalderon95, it's Fancy1959 back. I had another thought about one of the major concerns you shared with us, holding your baby. Remember, sometimes we have to think outside the box to help compensate the physical disability that MS shoves down our throats. When my boys were babies I often used front baby carriers that literally strapped the baby up against your chest. If it is fit correctly and carefully the baby is very secure. Have you thought about trying one of these? It would allow you to bond with your baby without you worrying about your muscle spasms. Go to a 2nd hand baby store and get one cheap to try out. Just make your setting when you start out. If need be, also get yourself a wheelchair and hold your baby in it. Second hand chairs aren't all that expensive. Whatever you do, do NOT give up bonding with your baby. Fight for that right of Motherhood, despite your MS. This is spoken from the heart of one mother to another. Together we are stronger! Fight your MS with every trick we can come up with. Fight on MS Warrior! Fight on! We are close if you need us.

[Kj9681]

I can relate. The electric shock thing was my 1st symptom almost 15 yrs ago...so they say. I, too, believe I've had symptoms since about age 14. I'll be 35 next week and living with MS just plain stinks at times. Right now, for spasms, in Cali they prescribed me MJ...it works! I'm in VA now...so... Anyhow, I'm taking Rituximab 2x/yr, and Ampyra daily. Vit D once a week, and my diet is strick. That stiff feeling (I call it the robot) was also only relieved by MJ. Montell has a lot right! Pay attention to what's going on...I'm an RN, and the "stigma" is ludacious! I stretch a lot and endure. The writing, been there too! Imagine having to paper chart...ugh! Listen, you'll get through it. Unfortunately, you have to find your own way with MS. We each have millions of nerves which is why everyone experiences a different pathway. Fight!! Practice with a doll if need be! Don't allow MS to take that precious child out of your arms much longer! It's your body! Not sure if you believe in God however, He makes me win!! MS can't have me!! Never give up!!

[Jcalderon95__ in reply to Kj9681]

Thank you so so much.

[Kj9681]

Also, baclofen relaxed me so much I was unable to walk, Avonex, Betaseron, and Tecfidera didn't stop my lesions from muliflying. Too many to count now. Because of God, I'm on my feet fighting to stay on them. I hope this helps!

[Juleigh21]

Good morning. My MS is mostly in my spine too. I also get that electric feeling in both of my legs when I look down and stiffness and spasms in my back, rt arm, and legs. I take Gabapentin when the electric feeling gets real bad and Baclofen for the spasms. Tysabri is my DMT. I think you need to have a talk with you doc and ask for more help. Good luck to you!

[Jcalderon95__ in reply to Juleigh21]

I'm on tecfidera and I feel like it's not doing anything because my symptoms seems to only get worse.. And tysabri in scared to have injections so often.. But thank you so much

[ajtiny]

I have been on Tysabri for about five years now. I also take Neurontin (nerve pain) and baclofen (muscle spasms). Before I started Tysabri, I was using a cane or walker, but now I am able to walk without a device. It's not a big deal once you get used to it. It's an IV drip one hour every 28 days. Everyone is different and will obviously react different to any medication.

[marcie20]

Hello I was diagnosed with ms right after I had my son in 1991, my first symptom was optic-neuritis and the tingling when I put my head down. I took Rebif for 3 years then switched to Gilenya my mri has always shown lesions on the spine and brain but there has been no new activity in lesions for 5 years. As far as spasms I take Baclofen and occasionally take CBD tincture drops. The National MS Society is a fantastic resource that can give you further ideas and can also put you in touch with support groups or individuals in your area. I worked with them in their peer support program talking to people on the phone, who were newly diagnosed or having problems.

[Nickygong]

I had this prob before after a very serious ms attack. My left eye went blind and won't be able to walk. After hospitalised, I recovered fully but got that very serious headache like electric shot or someone punch me hard that won't allow me sleep or work properly for two months ... I was feeling very depressed and panadol did not work for me. Finally my dr gave me lyrica 75mg and Deanxit that put me into sleep ... and that solved my issue finally

[Sukie427]

I am so sorry for you. There are many posts on this site about how significant others try to be understanding but they just don't get it, mine included. You are not alone in that regard, but you need to sit down and talk to him about the way he is treating you. Take him to your dr. appts. with you and let him hear the dr. explain what you're going through. While he probably won't ever completely understand, he should at least react positively to you and not do things to upset you, and you need to communicate that to him. I was fortunate that my children were already grown when I got diagnosed. It's hard enough not being able to carry and chase after my granddaughter; I can't even imagine what it must be like not to be able to hold your own child! Have you spoken to your health care team to see whether there are some assistive devices out there that could maybe help you with this? My daughter-in-law wears something that we used to call a Snuggli but she calls a Toula. She straps it to herself and puts the baby in it and she doesn't have to use her arms to carry the baby.

Also, has your doctor tested you for NMO (neuromyelitis optica)? Most of my lesions are in my spinal cord, and there is one in the brain stem that causes my mobility issues. I am on Tecfidera as a disease modifying treatment, but for your symptoms of nerve pain and tremors have you tried Lyrica or Cymbalta? Cymbalta is also an anti-depressant. If you live in a state that has legal medical cannabis, ask your healthcare provider about that, because it does wonders for the tremors and spasticity of the muscles. If not, try CBD oil, which you can purchase on-line and which is legal in every state, and/or Marinol, which is legal in most states. There is also a medication called Amantadine for the fatigue; my husband takes it as he suffers from fatigue due to a stroke.

Just from my own experience, it sounds like you and your husband could benefit from some conjoint therapy with a psychologist or clinical social worker or licensed mental health counselor, and you could do with individual therapy so that you can learn to deal with your disease and teach your husband how to give you the support that you need. You might also want to speak to your daughter's pediatrician about how to care for her with your disease, or if you can afford it get some help in the house. Do you have any relatives, such as a sister, who would be willing to help you? It really sounds as if you seed to first get to a good neurologist who specializes in MS to get your disease under as much control as possible. Healthy diet and steady exercise also will help. I know that the fatigue is terrible, but even a little bit of movement of your muscles is better than nothing. There is nothing better than a good support system. On-line support is great, but you can contact the National MS Society to find a live MS support group in your area, or maybe your health care provider can refer you to one.

You are trying to put your arms around an elephant and that is very hard. Take one thing at a time, and the first step is to get your disease under control as much as you can, then get your support system together, and your husband is obviously the main guy. So you're going to have to get him to man up on this one and be there for you. With all that in place, you can concentrate on the most important thing in your life--your daughter.

Good luck to you. My thoughts and prayers are with you.

[DavidinKnoxville]

Hello jcalderon,

It's wonderful to see all the responses you've had to an awful situation. I'm sorry that you are hurting on so many different levels.

Your MS seems to be a bit different from mine. One of the lessons, I've learned is that everybody's MS is different with similar themes and issues.

Reading your post a couple of times, it seems to me that your relationship with your husband and your child are the concerns you can work on. I've found it crucially important to address the emotional and spiritual (not necessarily religious) parts of my disease process. I would encourage you to find someone to talk to that is professional. This did me a world of good as family and friends can only go with you so far.

Unfortunately, I've seen that those we love and love us are not always the most supportive. In part, they are scared and they did not plan on what is happening like you didn't. But that doesn't mean you should take hurtful, neglect or abusive behavior. A good, objective coach would be helpful. I see a counselor/coach once a week who helps me. He's as much a part of my healthcare team as the doctor. Maybe more so.

Also take a look at your stress and distress levels. MS is aggravated by stress and distress.

Best wishes to you and it is good to see a whole community here to support you.

David

[cloudbear]

what your having is spasisity i think i spelled that wrong try cbd you dont get high from it and it helps antiinflamitory effects

[HeidiK]

Hi, I haven't posted much or replied to many posts here because I haven't been formerly diagnosed with M.S. or anything else for that matter and feel "under qualified" to comment. I'm seeing a Neurologist on October 1st because I have many symptoms and an MRI in April showed lesions in my brain.

I currently take Baclofen and Gabapentin for nerve pain and spasticity. Whilst they help take the edge off, they don't relieve these symptoms completely. Most of the time it feels like I've swallowed a mobile/cell phone due to the vibrations internally and I also have the electric shock feelings in my toes and up my legs.

I'm trying to stay positive but to be honest, I'm scared!

Wishing you relief.

[Taylorsmom]

Hi Jcalderon95__ , I'm so sorry to hear all that you're going through. I too was recently diagnosed (March 8, 2017) but felt like I've had this since I was around that age as well. For so many years, the only person who understood how I was feeling (tingling, numbness, pain) was my mother who had MS. I too have the electric shock feeling when I put my head down, my neurologist explained that the lesion on my spine is causing that issue. The lesion on my brain is causing my tingling and numbness. I have many lesions on my brain but they aren't active but that proves that I have had MS for many years. I will keep you and your family in my prayers. I know it's easier said than done but please try to stay as upbeat as you can because to my understanding, stress, sadness, etc. doesn't help the body of an MS patient. This community is a really nice place to come for support, to vent, etc. so whenever/if ever you want to talk about anything, come talk to us!