Last night before bed I started experiencing pain in my right arm. I've been having L'hermittes in my right side for a month but no pain. I thought maybe it was hurting because I was tired but I couldn't sleep all night because of this pain. All day I've had this pain. It hurts when I move my arm or turn my head. I've taked ibuprofen and tramadol but nothing seems to help.
I've also had a cramping like pain in my abdomen and it stretches across to my back... Anyone know what these things could be? Should I notify my doctor when I have new problems/symptoms? I'm new to this side of MS so any comments or suggestions are welcome. --Thank you!
Thanks, I'm used to notifying my doctor when I have new symptoms to help them reach a diagnosis. Do I continue to do the same after the diagnosis? I haven't started my new med yet. I'm waiting on the nurse to come show me what to do, so in the mean time I should just keep calling my doctor when I have new things come up?
If it were me, I would call about the symptoms you're describing. These are all pieces of the puzzle, and sometimes things we might dismiss ourselves are actually important details in reaching a diagnosis, whatever that diagnosis may be. Did you doc say anything about this? If not, why not ask him/her if it is helpful for you to call in this situation? My neuro always reminds me at my appts to let him know if anything changes prior to my next scheduled appt.
I have continued to keep a log of my various symptoms since my dx 3 yrs ago and call my neuro's office with any new concerns or to let him know about any worsening of symptoms he already knows about.
Okay, that helps. I was diagnosed Friday...so up until this point I've called when there was any symptom whether it were new or returning or worsening. But, nothing was said about calling after the diagnosis. I don't want to bother them if it's just one of those things I'm going to go through and they can't do anything about.
The pain in my abdomen comes on strong for a while then will subside, it's still there but won't be as strong. The pain in my arm is just there. I've taken ibuprofen and tramadol...neither seem to help. My dr. doesn't seem to want to give pain medication. I've had a history of migraines since I was a child and they give me stuff that's like candy to me. I take it and it does the same that tylenol does...nothing! So...I guess I will call in the morning and see what they say. :) Thanks for your help.
Hi - I was just diagnosed with MS a few months ago and I am sure I will be asking questions just like you in the future when new symptoms pop up. I had L'hermittes too on the right side. It was what got me pretty much diagnosed. I also had a throbbing pain in my arm like a turnicate was tied around it. I was put on Gabapentin (Neurontin) for the pain and L'hermittes. It helped. I am still on the meds because when I started to wean myself off, it started to come back. I just don't want to be on pain meds the rest of my life. I haven't experienced the abdominal pain, but have read about the MS hug and sounds similar. The best bet is to call your doctor and if you are hurting, they can do something about for you. Hope this helps!
I've been on Gabepentin for about a month now. I was on the 100mg 3 times a day and started the 300mg 3 times a day a week ago. Symptoms are still the same. That's pretty much what finalized the diagnosis. They didn't want to do an MRI of my cervical spine until I mentioned the sensation in my right side to them. I had one of my brain less than a week before that!
The pain in my arm is kind of how you described as if there were a turnicate around my elbow. My arm is very weak and painful. It hurts even when I move my head from side to side. I'm used to being able to hold my baby on my left side and do everything else with my right. Obviously he's been an unhappy baby when I have to do things that require any kind of strength.
My dr. office opens in about 15 minutes so I guess I will give them a call. They did say to call if I had any problems or questions...so, I suppose this is one of those times. I just don't like to seem like I'm complaining. But it is definitely debilitating!
I called my neurologist and she said that they didn't want to give me any more gabapentin for this issue. I was moved up from 300mg/day to 900mg/day. I was on the 300mg/day for a month and no change so the 900mg/day I've been on for a week and no change. She said there is nothing they will do for me for this problem and I needed to just rest when I have new symptoms unless it involves my vision (which I have issues with daily).
I have 5 kids...when is there time for me to rest?! Also, I have worse pain when I lay down. She said she's never heard of the pain the way I'm describing it. I've had so many (including yourself) who has told me they've experienced this, yet they've never heard of it???
I asked if she wanted me to call when I had new symptoms since that was never discussed and she said I could if I wanted to but I don't need to unless it involves my vision. So, I guess this is the point where I just deal with it?! The pain med they gave me is like candy that makes me feel high...it doesn't take away or even dull my pain. So, why call if there's nothing they will or can do? I guess I'll just make the necessary visits and that's it. I'll have a nurse coming out soon and I guess I'll talk to them if I have a problem.
Ok, I am not a doc. nor do I have the expertise to give you the right advice but I have experienced the type of pain you are describing. It hurts like H E L L when lying down if the problem is in your neck. I had the pain in my arm, could not lift it up and cried everynight because I thought I was having a heart attack.
I had an MRI done and they found two bulging discs in my neck at the c5 c6 area.
I would mention this to your doc.
I feel for you, if this is what is going on... don't wait on these darn doc.s , tylenol or ibuprofin does not touch the pain.
yes id get it checked out! i went through a simular thing- felt like muscle coming off the bone in arm- i could not sit at pc- any- i couldnt use it -it hurt! well did a c-scan and all -it was guess ms- the muscles-lessions -not getting the right signals?? i dont know but after about 6 weeks- was sooo much better. am fine now- but you never no,might have hurt yourself?
@Pam-- It does hurt pretty bad. If I keep it in the same position it feels fine, but when I strain it at all, it hurts bad! It's mostly in my arm but for some reason hurts when I move my neck. I have a little pain in my neck but mostly discomfort. The pain is mostly under my arm and in my elbow.
@Cainer-- If I sit at the computer and type, it's fine, but when I take my fingers off of the keyboard, it hurts. Or if I look at the keyboard while I'm typing it hurts.
Needless to say it's causing other pains (like headache!) and my doctor said there was nothing to worry about or be seen for. They don't feel that I need pain meds for my migraines. They don't understand that I've had migraines since I can remember, at least since I was 4 or 5. So a lot of pain meds don't work for me anymore. The crap they gave me is like candy that makes my head feel cloudy.
I took one last night and my husband kept waking me up because I was talking crazy about pancakes and random crap like that. But I didn't think I was asleep. I felt totally awake but I also felt awkward. It's hard to explain. But I still had the pains in my head and arm.
But my doctor wants me to continue taking this??? Also, she didn't tell me I cannot nurse my baby and take it at the same time. I just happened to look it up when I got it and (as I was nursing my baby) saw that it can be very harmful to my baby!!! So, as you may assume, I had to quit nursing him. I know I won't be able to once I start the copaxone too so I guess I found it to be a good opportunity to stop.
Another bad thing is, this is the ONLY neurologist in my city and surrounding cities! What a monopoly they have here. Where else do I turn? Can my PCP help me do you think?
My PCP was the one that ordered the MRI of my cervical spine. She was the one that called me with my results and told me that I had a tear in the tendon, two bulging discs on c5/6 and impingement on my nerve. She then sent me to an orthopedic doc. for further workup. Luckily it healed up with out needing surgery. This was with me for about 5 to 6 weeks.
The pain was absolutely unbearable when lying down or leaning my head up against anything. I couldn't lift my arm up past a certain degree and it didn't hurt as much during the day. Mostly at night. I did not sleep at all! I couldn't get comfortable.
If anything, call your PCP. You shouldn't have to suffer.
I hope this eases up for you, good luck,
I've had arm issues since my mid 20's never ever had an explanation, not when it started and still not now. When it first happened i'd spot cleaned a stain off the rug, seriously something a mum with a toddler has done a million times before, but something was very different. The pain was totally unexpected and off the chart to anything i'd ever experienced before. It was in the upper arm part, i suspect it was and is my first muscle issue though i've accumulated many more since.
I use to say i've got the 'probablies' again, dr would say its probably xxx and run what ever test, it wouldn't turn out to be that but the dr would still say its probably xxx just not showing up on the test. lol
I was dx with idiopathic intercostal muscle spasms in half my ribcage back in 08, a year or so before i'd torn the muscle off the bone in the lower part of my arm, it all adds up to the same repeating remitting problem. My muscles dont like me! lol
I've yet to call my PCP about it. But the nurse came out today to show me how to use my shot. I told her about it and she says she will see what she can find out and give me a call back if I haven't heard anything from my doctor first. I failed to mention it to my PCP when I was there yesterday. I was there for my daughter's physical and that got a bit hectic so it slipped my mind. But I kicked myself once I got home and remembered the pain is still there.
It's not quite as bad as it was when it started. It's mostly in my under arm. It feels to me like it's a muscle. But I've gotten a similar pain in my right, upper leg and hip...what the heck?! But, it's not severe enough for my doctor to want to see me. I will be at my PCP again Monday for my baby's 1 year checkup so hopefully I can remember to say something then. They're really bad about calling me back but are great in person. So, I'll write a note for myself to mention it monday! My memory slips from me so easily anymore...
Your doc. doesn't sound like she's there for you - "don't call unless you have vision problems". Like that is the only symptom worthy of her care? Is there any way to find a MS neurologist to treat you? I drive an hour away for mine. I live in a small town too. You deserve a doc you are comfortable with and encourages you to call for whatever is bothering you!
The neurologist I go to is the "best" MS neurologist in my town. I live in a small city where there are no neurologists. I go to the nearest city that has one...and he's the only one! Well, there are a few in his practice. I've only actually seen him once. I see his physician assistant or his nurse when I go. He's been out of town on all my appointments to see him.
You would think, in a city like Tallahassee, the capitol of my state, there would be more! It's a good size city. I moved here from Pensacola, which is less of a business city, and there are MANY to choose from. I was going back and forth to see my neurologist there but that became a bit much. It's a 3 hour drive with my whole family. Although, he was more thorough and even a heck of a lot nicer. I still am able to go see him if I'm in town. He updates himself through my doctor as well. I wouldn't even have to make an appointment to see him if I felt like I needed to. I would have to sit in the waiting room for a while but I would see him!
I told my PCP the problems I was having. She seems a bit frustrated that my specialist was not taking a special interest. Although she's not doing anything either. She was also surprised that they put me on medication that I can't take while nursing my baby without telling me the side effects it can have on my baby. So I had to quit nursing altogether. She was a little upset about that...but still does nothing...But what is there that she can really do? Nothing I'm sure. I guess I just rely on myself to do what I feel necessary.
Could be that a trip to the chiropractor might be just the thing. Often times, the neck gets out of alignment and causes arm and hand issues as well as issues with rib cage and a host of other pains.
I think my chiropractor has helped with MS hug and numb hands more than any medications ever did or any neurologist ever could. Just an alternative to think about.... and fine a good one. Ask around, see who does muscle work like ART (Active Release Technique) as there are good chiros and bad ones just like Neuros and other doctors.
When I had this same arm pain, I went to my chiro. They wrap it in a cold pack and run electrodes to stimulate my arm while I lay there and listen to relaxing music. I know there is a name for this treatment, but can't remember what it is. It was very relaxing and made it feel better. I went several times a week for a couple of weeks. I didn't know I had MS at the time either and just thought I did something to it. I now know why!
@ Jeny--I may try to find time to go to a chiropractor. I'll have to do my research and find a good one here that isn't too expensive. My husband loves to go for his back since he has over developed lower back muscles. Our chiropractor where we used to live would have to put a heating pad and the electrodes on his back to relax his muscles before he could do anything with him. He loved it. I went the one time and he kind of massaged my shoulders then all of a sudden cracked my neck with no warning. It freaked me out and I never went back. I thought he broke my neck! haha. (Of course he didn't)
These little aches and pains come and go and ibuprofen doesn't work. Some keep me from doing the daily things I need to do like laundry, dishes, cleaning my house. (And with 5 kids you should see what happens when I take a day off!)
@ SarahL--I see Dr. Ortiz. There are several neurologists in his office and his office staff altogether is pretty bad. I don't think my doctor would ever refer me to shands and I'm not sure if I would even need to go that far. Dr. Ortiz quit seeing a friend of mine that had a brain tumor that needed to be removed because she got upset. She had to jump through many hoops to be able to get into shands since she was not able to get a referral.
Jacksonville and Gainsville are way too far of a drive for me. I was going back and forth to Pensacola but that's a 3 hour drive in itself. But I had a great neurologist there.
When I go to the chiropractor, he works my feet, my lower legs, doing muscle work, stretching, and works the stiffness out. MS has caused me to get terrible spasms in my legs and feet. After he works on my muscles, he does do an adjustment, cracking as you call it. LOL Lower back, Neck and often times adjusts my hands and feet, realigning the bones. It makes a major difference in my ability to walk comfortably, my pain levels and general well being.
I think I would have been diagnosed with MS about 20 years ago had it not been for my chiropractor keeping in tip top shape.
The cracking won't kill you, it is just a release of pressure in the vertebrae area. It sounds bad, but usually feels much better later. I think keeping the spine aligned is a good thing. With MS we need all the help we can get.
I'm feeling for you as I read your descriptions of how tough life has been these first few weeks since diagnosis. It seems like this neuro and his staff center on diagnosis but lose interest soon after that milestone is reached.
Living well with MS requires long term access to health care professionals who stay informed about new ideas and care about you enough to individualize your care. A short travel distance is going to have a hard time compensating for services you miss out on if you aren't able to connect with this neuro group. Many members travel for infrequent but complete neuro visits with an MS Specialist and use a local PCP, neuro or email connection for day-to-day questions.
As for your pain issues, anything we can come up with is pure guess. I'm wondering if the cramping pain in your abdomen could be related to a bowel issue but certainly can't be sure. I do know there are many possibilities regardless of your diagnostic status.
You need to find a doctor who is willing to examine you and ask questions to determine the cause of EACH complaint you have and order treatment that can help. Any drug that gives you a high but little to no pain relief needs to be removed from the house. It is NOT doing the job it was prescribed to do but has great potential to harm you and/or your children. (I trust you are not letting them hear you call it candy.)
Narcotics work quite well to relieve muscle, bone and organ pain. They are often ineffective against migraines and nerve pain. Sometimes people will be heavily sedated so they can sleep through migraine pain that can't be relieved. That's a poor option when you have children to care for and frequent headaches. I'd look for someone who can help you find the triggers for your migraine pain and work toward prevention.
The highest dose of gabapentin won't help your arm if this pain is from spasticity instead of paresthesias. A physical therapist familiar with MS might be better at evaluating the problem and suggesting a combo of drugs and physical treatments that will help now and keep you moving over time.
It always concerns me when doctors can't think of any solutions beyond their prescription pad. You are very young and a lot of life and responsibilities lie ahead. I certainly don't suggest you resign yourself to a painful existence. Sometimes, drugs are the only thing that can keep us functioning and we are forced to take the time and effort to determine the smallest effective dose. Too often, we do have to decide how much pain we are willing to tolerate so we can remain active life participants.
I encourage you to find the person who can help you understand the changed body you are living in now-a-days Mama. I don't envy this journey that has started for you at a time overflowing with important demands. I am sure any time you can devote to understanding your personal MS story will pay big dividends.
I hope something here helps and relief comes to you soon.
I am certainly one who hates to take medication. I take the copaxone because I need it. And I take the Gabapentin for l'hermites. The pain came later. Although, the dr. did say it would also help with migraines but I didn't have this migraine (for almost 2 months might I add) until a day or two after I started the gabapentin! They say headache isn't a side effect but upon research I found that it is.
I would never let my children have any thought that what's in those bottles is candy. I would never even utter the word "candy" when talking about this medicine to them. They are well aware that it is not even to be touched. (Which they shouldn't be able to get to it anyhow). The side effects for that pain med is outrageous and not worth even taking especially since it does nothing for me.
I don't like the "high" feeling and I don't like the pain. Even ibuprofen makes me sleepy from time to time. My dr. says if the ibuprofen doesn't work after the second dose to stop taking it and take something that will work. But what is that??? I though the whole purpose of having a doctor was to find what ails me... This staff is not in touch with thier patients. However, traveling is not an easy task either. Dragging these kids from town to town is very difficult. I have to take into account schooling, stopping to eat, bathroom...it's very hard. We tried going that route for a few months and it didn't work out well at all.
I'm just doing what I can to make life easier for me and my family and staying away from the drugs that doctor gave me!
I totally agree with your opinion of Ortiz.....he's quite set on himself.........
my friend in AL, her neuro has someone in his office who does massage on his MS patients when they are there for visits with him........it looked so relaxing when I went with her!
I had just gotten my Shands referral when my doctor died........so there went the one who was "in my corner" so to speak......I'm driving at least 8 hrs one way to see the wonderful neuro that I now have.
Zeb is another one to stay away from; he doesn't keep good notes, he's a rheumo but needs to retire! He wrote me off when I corrected one of his errors.
Not sure of your reaction to my thoughts. The intention was to confirm that your needs aren't being met by the doctors you are seeing presently and that you need treatment that offers more relief with fewer side effects. I realize this is harder when you have young children and many responsibilities. That's one of the things that peaked my concern. I hope that showed through.
Sorry if it seemed I was attacking your mothering skills. It wasn't my intent. I know now that both of us are well aware of how to keep kids safe from Rx meds. I've learned over the years that I can't just assume everyone knows what is obvious to me. I'd rather risk offending a mother than say nothing and risk a child's welfare.
I must have misread somewhere along the line because I had the inpression you were taking more medication than just Copaxone and Gabapentin (or did in the past). I hope you made progress toward pain relief in the office today even though it wasn't an appointment specifically for you.
JMO ladies, but I think you should consider taking discussions that name specific doctors or their practices to the private message format. If you are interested, there are also a few online rating services that make physician ratings public at no cost. They would welcome your opinions about specific neuros. (We love sharing opinions too, of course, but using names isn't always in YOUR best interest and can make weinie roasts difficult;)
I totally didn't think you were attacking my parenting skills! I know it's hard to know the tone of voice in a message. I was just assuring that the ways I may speak of things online is most definitely not how they are referred to at home. My kids are well aware of what is medicine and what is not...but I do have two very young ones who don't know the difference.
I'm only on copaxone and gabapentin and was given tramadol for pain. I may take the tramadol once every other week to get the edge off (which is all it really does on occassion). I've had this headache for almost 2 months now. It's not uncommon for me to get frequent headaches but usually ibuprofen does the trick. Unfortunately it hasn't been. I've also been experiencing other things since I started the gabapentin. I'm constantly itching. My lover legs feel like I have excema and I've never had any sort of skin condition in my life. Only skin sensitivity I have is to mosquito bites, I live in Florida and am quite used to those!
I've been getting hives often along with the itching. The nurse from shared solutions is coming back tomorrow since she's the only one who seems to care. When I tell her (or anyone at shared solutions) that something seems wrong or even if I just need to know if something is normal, they answer my questions pretty thoroughly and if they can't they find the answer and call me back! Why can't a doctor that's supposed to have my best interest at heart (afterall, that is what they get paid for, right?) get me the answers I need.
I'm very new to this and some things that concern me may be normal and I shouldn't worry. All they need to do is call me back and tell me that it's normal and I need not worry! I'm taking a trip to my old city in less than 2 weeks so I may see if I can get in to see my old neuro. He was wonderful!!! The trip may have to come a bit more frequently even if it's consistantly every 6 months or so. I think that may be beneficial to me even though the trips are kind of rough. I should have a sitter for my kids on this trip so it won't be so bad.
I just need to get in a comfortable place with a good routine so things won't seem so crazy to me!
LOL, I didn't notice the eczema spelling. It did give me a chuckle though that it was bothering your lover legs!!! Not to worry, our fingers simply can't talk as fast as our brains think. Not at ANY time of day. Nobody here cares much about spelling or grammar as long as you keep creating those nice breaks every couple of lines.
Keep at this. This first year really is very, very difficult. You will find the right balance of drugs and providers that works for you. It's just a long process that can leave you wondering if you are ever going to feel better.
I'm glad to hear your SS nurse is so helpful. Many of them have been criticized for never deviating from their 'script' answers. Definitely quiz her about these skin problems and headaches that seem to have appeared in direct relation to starting the gabapentin. Allergies and side effects aren't a major problem with the drug but they aren't unheard of either. Anything that shows up when starting a new drug and doesn't go away has to be viewed with suspicion.
I'm glad to know we understand one another. Also hoping you get this part figured out quickly. Is the pain improved now?
HA! I didn't notice that one! I usually read over it before I post it so I don't repeat too much or misspell things! That's a good one! Looks like I'm pretty proud of my legs! LOWER! lol.
My nurse came by today and it was a good visit. I feel more comfortable with a lot. She hasn't heard of gabapentin so she wasn't sure about the side effects but she took notes of it to research and say something about it. I looked on drugs.com and it said this:
"Seek medical attention right away if any of these SEVERE side effects occur when using Gabapentin:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); abnormal thoughts; back and forth eye movements; behavioral problems; change in school performance; chest pain; confusion; fainting; fast, slow, or irregular heartbeat; fever, chills, or sore throat; hyperactivity; loss of coordination; memory loss; new or worsening mental or mood changes (eg, depression, agitation, anxiety, panic attacks, aggressiveness, impulsiveness, irritability, hostility, exaggerated feeling of well-being, restlessness, inability to sit still); new or worsening seizures; numbness of an arm or leg; one-sided weakness; severe headache or dizziness; shortness of breath; speech changes; suicidal thoughts or actions; swelling of the hands, legs, or feet; tremor; trouble concentrating; twitching."
That's exactly how it's worded, I just copied and pasted. It was funny (not funny haha but just...funny) that right before I looked up the side effects I was, once again, complaining of this itching and trouble taking a deep breath. I wake myself up at night thinking that I can't breathe. And I can't do a whole lot without running out of breath. I sound like a 90 year old obese smoker!
When I'm still it's not as bad, it's worse when I'm chasing after kids or cleaning house...things I do fairly often I'd say!
The arm pain has gone. It didn't last long but I was just curious about it. Most the aches I have come and go. Not many stay for a long period of time.
I also am wondering how I can find these group MS meetings that go on. The SS nurse mentioned it to me the 1st time she came out and said she'd call me when one came up and when I asked about it today she said there was one on the 25th that she didn't make it to and would let me know when they have another one here.
I'd really like to go and learn all I can. My husband and mother want to go to learn as well so they can get a better understanding of what I'm going through, or may go through. I have educated them as much as I can but I know there's still a lot to learn! My mom is a nurse and doesn't get an opportunity to learn much about these things anymore. So she is very curious and wanting to educate herself as much as she can to help me or other patients she may have.
Do you know how to find out about local events such as these? I would really liked to get involved as much as I can!
Hello, I read your post about the pain in your arm where you said it felt like your muscle was coming off the bone. I too feel this pain in my bicep and shoulder and its terrible. It feels like my tendons and muscles are tearing.
May I ask what you did, tests you had done and what the doctors did to help you in your case.
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