Spacidity Question/Poll for everyone.....

[Fancy1959]

Hello everybody, it's Fancy1959. A few weeks ago I had a spasticity attack that was unlike any I've had in the past. I went to my monthly visit with my alternative medicine D.O. today and he was very concerned when I explained the attack to him. He encouraged me to speak to everyone to see if anyone else has experienced anything like what I did. Of course I explained that everybody's MS was unique and different than everybody elses and he said that he understood that but he still asked me to check in with you all.

Long story short I got up to go to bathroom in the middle of the night and my right leg decided it didn't belong to my body, it was in extreme pain and felt as if I'd run a marathon with itby itself. This spasticity attacked only my right side and actually made me curl over toward the right. If I didn't have my Walker right there I would have fallen. It took me a minute but I got straightened up and went to the bathroom with my leg's thigh hurting worse than it ever had before. As I finished up washing my hands and drying them I was hit by a second wave of spasticity. It again was extremely intense and extremely painful and hit only my right side. Only this time in the bathroom I had nothing to grab hold of as I curled over to the right, so it knocked me down hard. I bet you my leg hurt for the next couple hours bad and even was beside itself and extremely sore the next few days.

After speaking to the MS nurse coordinator at my neurologist office she told me that if I experienced that type of spasticity attack again I needed to come in and see them right away. My question to everyone is has anyone ever had their muscluar spasticity attack only one side of your body and attack is so hard that it literally knocked You Down? On a scale of 1 to 10, I would have rated the pain in my leg to be around an 8. It was extremely debilitating. And this coming from a woman who handles pain very very well. I actually had all 3 of my sons natural and have broken bones and have lived to tell tall stories about it.

I look forward to your responses. Thanks for sharing your experiences. Fancy1959.

[CalfeeChick CommunityAmbassador]

Wow, you are truly a Warrior. Sorry that you are experiencing this. I've not had that happen. Have had times when I get up in middle of the night and my legs are weak.

[Fancy1959 in reply to CalfeeChick]

Thanks CalfeeChick. I really don't feel like a warrior most times, I actually feel like I'm too pigheaded and onery to lay down and roll over and let this monster beat me!

[Raingrrl]

Hi Fancy1959 ...that sounds horrible and scary! I've not experienced anything like that even when I get up in the middle of the night. The spasticity I experience is only when I get too cold. It makes me feel like my muscles are 'frozen' and that if I move my limbs too far, the muscles will tear. Movement becomes really painful but it all goes away as soon as I get warmer.

[Fancy1959 in reply to Raingrrl]

Raingrrl, I understand what you're saying. My muscle in my right thigh is still bothering me and it feels almost as if I pulled it or torn it.😥

[agapepilgrim]

Fancy1959

[agapepilgrim]

Fancy1959

[Fancy1959 in reply to agapepilgrim]

Agapepilgrim, I got your reply on my email. I don't know why you had trouble linking in but thanks for taking the time for touching base with me. You are very special and thanks again. Fancy1959.

[Miriade]

Hi Fancy 1959. Guess what, you are not alone. The explanation of your huge strong spasm that happened and repeated (like a wave), in a specific muscle group and so strong that you almost fell, happened to me and more than one time. My first time was before I started treatment for MS, I did not know what was going on but it was strong waves, that were not common muscle spasm, I named similar like a woman in labor. It was huge, super strong spasm, like if I have tetanus, but was coming back in strong waves. Even completely quiet it was coming back , and after I went to a Physician DO who gave to me for the first time Flexeril and 2other muscle relax, I had to be in bed for 2 days. Any moviment was activating the spasm waves, not so strong under muscle relax and other medications for sedation. Now I figure out that I was in a flare up or big brain/nervous inflammation that caused to me in my right side muscle thoracic spine all thoracic spine part. I did not have the diagnostic of MS until one year later with MRI.

And after I had started Tecfidera I still had again, 6 months later, but not so miserable strong like woman in labor, and I guess is worse than kidney stone pain either. The conclusion, the comands comes from the brain, not electrolytes, water, magnesium deficience,etc. Talk with your Neurologist.(until I have my MS under control I had this kind of strong muscle spasm in waves in 3 episodes very far from each other, without even reason to start, not even doing any physical activity when started.

[Fancy1959 in reply to Miriade]

Miriade it's Fancy1959. Thanks for the reply. It's good to know that others have experienced similar, consuming spasms, but having said these extreme spasms on you or anyone else. I could not myself compare my muscle spasms to the labor pains that I experienced with my three sons. My labor pains where consuming but they focused on a specific area around the middle of my body with the sole purpose expelling the infant inside of me.

The muscle spasms that hit me consumed my entire right side and make me curl up into a ball and would not let go for several minutes. It was like my side connected by strings and someone pulled the string so tight I could not even attempt to straighten up or make my leg work. The main point of comparison between labor pains and this muscle spasm pain was the severity of both were extremely intense and painful beyond belief. So I totally agree with you there that they both were extremely painful. Once again I don't wish this on you or me or anyone else but thanks for letting me know I'm not alone in having these intense muscle spasms.

[erash]

Fancy1959 that must have been scary! I've only had isolated spasms in my left foot and left face. Face contorted every few seconds so bad that I finally took 10mg of valium to stop it (fell asleep 💤).

Curious. What would your neuro do "right away" for you?

[Miriade in reply to erash]

When I already had a regular Neurologist, he just could gave to me the specific anti spasm medication and anti inflammatory for I take, because I was already taking 240 mg of Tecfidera and it was showing improvement with my no stop headache before Tecfidera. Tecfidera is a very good DMT and works inside the brain,very good anti anti inflammatory and made disappear and stopping my brain atrophy comparing to the next MRI year later and no more spasms. He could only give to me symptoms medications, no heat to relax, no cold to relax, no massage to relax, no gel or local products to relax, reduce or making dissaper the spasm.

[Fancy1959 in reply to Miriade]

Miriade, it's Fancy1959. Unfortunately I had to stop taking Tecfidera as it stopped controlling my MS. I have to admit while I was on it it seems that I had less issues with my muscle spasms. I also still use ice or heat on specific muscles to reduce muscle pain and tightness. Old school I know but it works for me.

[Miriade in reply to Fancy1959]

Hi Fancy1959, Tecfidera has too many side effects, but it was great until I could not control all side effects like nauseas, flush, stomach indigestion, little down also. I had to stop because of lowering my white blood cells too much. I also prefer Old School treatments. I have many options of heat pad including a big infra red light that I use to hang little far to take my light therapy anti inflamatory. Its work also. I lay down in my bed and use timer for 15minutes ,control spasms around my spine. I tried cold therapy but for me only related to feeling pain, not spasm. Those strong ones came in very far interval, few months apart. Glad to hear working ice and heat. I also had tried the Tens electric pulse to neutralize my super huge spasm ,did not work eitther. Nowadays I use Baclofen 10mg only every other day. I asked my Neuro to prescribe Diclofenac oral 50mg and works well in between for pain and spasm.

Thank tou for your reply.Its good to know it was solved.

[Fancy1959 in reply to erash]

Erash, it's Fancy1959. I do take baclofen for my muscle spasms I cannot take a very high dose and it makes me very loopy. I'm not sure what else my Neurologist would have done since I have not had a second episode and have not seen him yet. Hopefully I will not need to go in to see him because it won't happen again. So the mystery remains....👻

[greaterexp]

Fancy1959 , I'm sorry you had such a painful and scary episode! From the responses here, I'd guess that this can happen, though very infrequently. Perhaps if this ever happened again, your neurologist could prescribe something to relieve the spasms.

[Fancy1959 in reply to greaterexp]

Greaterexp, it's Fancy1959. I am on Baclofen to help with my muscle spasms. Unfortunately I have to take a very low dose or Baclofen makes me very loopy. 🙃

[ssdw1958]

Hi fancy1959 I have had spasms and let me tell you they have been crazy for about a month but last night I had to get up at my usual time 3am and I didn't even want to stand up because I knew what was going to happen and it did. My bad side is my left side,last night I was turning around and almost fell over I have a rollator but I didn't I caught myself. I have been having spasms every time I stretch out, this morning I said to my husband this going to be a bad storm we are due to have a NorEaster on Saturday night into Sunday morning something is happening with the barometric pressure because I can feel it not good for people with M S I should have become a meteorologist. I am not kidding be careful.

[Fancy1959 in reply to ssdw1958]

Ssdw1958, it's Fancy1959. I understand how when you stretch the spasms take control. When I stretch out my legs go so straight and stiff they refused to bend. This sometimes can go on for several minutes or even more. The only way I can make them band is to gradually get my foot and work my knees back and bend them manually. I know I sound like a broken record but I'm looking forward to starting Ocrevus. I pray that he can help control these increasingly severe muscle spasms. I understand how careful you and I and others experiencing these need to be. It is so hard sometimes to remember to keep that rollator handy. When I fell from this type of spasms the last time in the bathroom my Rollator was right next to me and the spasm hit so hard and fast I didn't even have time to read it before I wound up on the ground.🙁😦

[Miriade in reply to ssdw1958]

You are right about barometer, its really affect everything on Earth, but we do nor have the sensor like birds, fish to predict and prepare ourselves. I bought years ago a barometer decorative for the living room and really shows when headaches, running nose are happening too.

[WAshingtongirl]

I've never had what you experienced, Fancy1959 . I'm sorry for you and others here that suffer from this. I hope your neuro has some answers (and relief) for you. 💕

[Fancy1959 in reply to WAshingtongirl]

Tutu, thanks for the support. Fancy1959.

[bxrmom]

Fancy1959 I have not had spasms like what you experienced but I do occasionally get get bad spasms in my left leg and the only thing I can do to relieve the pain is to stretch the leg way out. I do take baclofen (up to 4 times a day) and tizanadine (twice a day) for spasms as I was still having bad spasms with just the baclofen.

I hope that you are able to get some relief from those debilitating spasm you are having.

Jessie

[Fancy1959 in reply to bxrmom]

Bxrmom, Jessie, it's Fancy1959. I hate to take any drugs that wipe me out. What type of side effects do you have from the Tizanidine? I have never heard of it or been on it before. I will be sure and bring it up to my neurologist if the severe spasms happen again. Thanks for the advice and it just goes to prove we have much to learn from each other and together we are stronger and smarter!

[bxrmom in reply to Fancy1959]

Fancy1959 - Tizanidine is the generic of Zanaflex. In the morning I take 1/2 a pill because a full pill will make me sleep all day. At night I take a whole pill.

Hope this helps,

Jessie

[Fancy1959 in reply to bxrmom]

Thanks Jessie. Yes it does help a bunch. I will talk to my neurologist about it if the severe spasms come back. Fancy1959.

[rlh1974]

Fancy1959 Hi! I am so sorry to hear you fell! You are now probably sore from just that! To your point. My legs take turns. Not every time I get out of bed. But every couple of days. Generally it happens before I get my cane. I have a window ledge I grab when it happens. Yes it's horrific! I generally get stuck for about 2 or 3 minutes and let out a yelp! So I try not to get out of bed at night for fear of waking my wife. She God bless her is basically a single mom and only gets about 5 hours of sleep. So I hold it as long as I can. But my prostate sometimes doesn't let that happen. I know TMI. So yes. I get one side or the other. Rarely both at the same time. And it really hurts!

[Fancy1959 in reply to rlh1974]

Rih1974, it's Fancy1959. I hate that you also have to go through the horrific spasms. Since you've started using a walker I suggest you put it all on side your bed, like I do, so if your spasms hit you can have something more stable to grab than your cane. Thanks for the support and the reply. What therapy are you currently on? It seems my spasms have got much worse since I went back on Tysabri. Realistically I know that it is just my SPMS getting worse.😞

[rlh1974 in reply to Fancy1959]

Fancy1959 Good morning! I currently am on no therapies. I am on several muscle relaxers, a couple anti seizure meds, a anti depressant and something else. I have become quite inept at swallowing 15 pills at a time. Oh I have mentioned before. Opana for pain. I am worried I will loose that once I go on state aid. I have had all the screening done for the new drug O something. My brain doesn't like to remember it. GAH. I am also in PT twice a week for Thoracic and neck strengthening. So, basically I am on my own just to deal. I am on more Baclofen than my foster son who has cerebral palsy, and my nephew that is on a baclofen pump. It helps. I guess. I am praying this new drug with dial things down a notch. But I am still on the fence. I haven't really had a good day in weeks according to my wife. Which breaks my heart for her. So, hopefully that ramble answered you question.

Have an amazing day!

[Miriade in reply to Fancy1959]

Hi Fancy 1959, are you taking Magnesium Malate or Taurine and Alpha Lipoic Acid, plus Curcumin 95, etc. I am without DMT for one year still going back soon. The old school natural supplements are holding my situation not visible for now. Im going to Imunologist appoit soon to figure out more options. Also talking L-Theanine Iguess help me to relax, calm down and less symptoms.

[BillD999]

Fancy1959 I have an interesting story on this subject; I am not overly troubled by spasms, except for some foot & calf spasms which I control with stretching. One night however I had a wave of spasms over several hours affecting the whole lower left region of my body (the area most affected by my MS) very similar to what you describe & unlike anything I have experienced before or since. After over an hour of these repeated spasms I actually started to vomit & I realized what I was going through was a result of food poisoning. The spasms began long before any stomach discomfort but I believe that was the explanation. I had eaten a salad from a fast food restaurant (last time for that) & after emptying my stomach the problem gradually went away. Very unpleasant, but interesting in thinking about the relation of the gut & nervous system.

[ssdw1958 in reply to BillD999]

I also have had that happen to me but not as bad that is why I get upset when someone who is sick comes to my home and they know that they are sick 10 to 1 I will get it. I sound like a hypochondria I am not but really if you know you are sick don't come to my house, call me we can talk on the phone.

BillD99 I am glad you feel better. Have a good weekend. 😃

[Fancy1959]

Wow, BillD999, it's Fancy1959. Isn't it amazing how our entire body is interlinked on more than one level. It kind of makes sense to me that your MS was affected by food poisoning. My Ms is affected I pretty much everything that goes wrong with my body be a virus, fever, illness, or injury. Especially anything that happens to my body that is or has a severe reaction. That food poisoning caused a severe reactions to your body and it sounded like your MS just jumped on the bandwagon so to speak. Yuck!