Pain with MS

[Needhelp16]

I was wondering if anyone could explain to me the pain that can be attributed to MS. I looked it up online and it was very confusing to me. I understand what a MS hug is. I also understand the electric shock sensations and tingling and numbness, and eye pain but it seems that any kind of pain any where in your body can be from MS (muscle or joint pain). Is that correct in saying?

The reason I'm asking is because I'm in the middle of the dx process and I have some weird unexplained pain that has just started. Im wondering if it could be because of MS or whatever might be wrong with me.

The pain is in my right shoulder and goes down to my elbow (on both sides of my right arm). The best way to describe it is like I've been throwing a baseball or football for hours on end. Sometimes it's just sore and sometimes it hurts very bad. I have done nothing to hurt my shoulder, as the pain just started on Thursday while I was at work and I work a desk job.

I would not really think much of it except last night the pain was so intense I couldn't sleep. It eventually went from pain to soreness again.

Thanks in advance for any comments!

[jen673]

Good!  I have a huge list of questions every time I go the office too.  I asked my doctor how sure he was that I had MS.  This helped me with the shock and acceptance of MS.  You might want to add that to your list.  If you have to wait some time for results you will at least have his opinion.  

Keep us informed how your LP goes!  

Best of Luck,
Jeny

[Needhelp16]

Jeny-
I'm glad my post was some help to you!  :)
My neuro is a MS specialist. He only has this recent MRI to go by. The one from 10yrs ago isn't available because I don't remember where I had it done. My neuro really didn't say much. Just that the "spots" were very small. I was pretty shocked by the MRI results so I didn't ask too many questions. Tomorrow is my LP and I already have a list of questions for him!

[jen673]

I am glad you are feeling better.  Your story is so similar to mine.  In fact I just saw my MS neuro's PA and asked her why he didn't do any further testing other than my MRI's to diagnose me.  I was thinking of your post at the time! LOL  BTW, my MRI's are similar to yours, just maybe more brain lesions from what it sounds (15-20).  Anyhow, I never had the LP test and wondered why.  She said I met the criteria of space and time along with MRI's consistent with MS.  I am just wondering why your doctor isn't telling you it's MS and why he needs further testing.  Is he a MS neuro?  I had normal blood work and ANA slightly elevated too.  I guess it's not a bad thing he wants to be extra sure but sounds like he's leaving you in limbo a little too.  Once you read the radiologist report it will be clearer for you hopefully!   There have been a lot of posts on here about LP testing that may helpful for you read.  Good luck with your LP.  

Jeny

[Needhelp16]

Bob-
My neuro did explain that the LP could read negative but I could still have MS. He said after getting the results we'd go from there. What other tests can be done, idk because he didn't say. I've already had loads of labwork done an everything came back normal with the exception of ANA, which only came back slightly elevated. I've also already had a nerve conduction study done and he ruled out carpel and tarsel tunnel with that!

Sidesteps-
My sx have gotten better. The numbness and tingling is maybe every other day now. The shoulder/arm pain lasted a few days and went away, but it's back again today!

[Sidesteps]

I'm glad you posted this as well. I am in limboland and really trying hard to not attribute everything I'm going through in one direction but it's like a switch went off for me. I have been having intermittent issues with this since I was sick last Fall. I was suspicious of MS when my 1st Neuro diagnosed me with optic neuritis and internuclear ophthm

It's the oddest darn thing -- I noticed that I had this area on my left shoulder that ached for no reason. It felt tight and burned. It really hurt and throbbed at times. I kept trying to massage it out since it felt like there was a tender lump there. In fact, it felt like I could move "the lump" so I feared a tumor but I'd go back and forth between trying to rub it out then leave it alone. It lasted a couple months (through the worst of my flare along with very painful neck tightness) then it just went away.

I have had these areas off and on since last Fall in different locations. I am just starting to get over my right shoulder being so tight that I couldn't lift my arm above my head. It felt like I had a pulled muscle but I only had difficulties when I attempted to move my arm where it didn't want to go. Painful resistance. I have just kept trying to stretch it. I only had mild achiness this time but I could feel the increased muscle tightness.


My Neuro did inform me that it's part the same grouping of symptoms I am having. At this point, I'm okay without further medications - I take ibuprophen when I need but I will ask for guidance on when I should be concerned enough to call at this next appointment.

[COBOB]

Just keep in mind, that the existence of unique OC Bands in CSF helps with the diagnosis, but lack of OC Bands doesn't mean much.  There are about 40,000 PwMS in the US with clinically definite MS, but no unique OC Bands in their CSF.  Sometimes (about 10% of the time,) the CNS just doesn't  produce unique immunoglobulins

This is also a high technical lab test that depends a lot on the lab performing the test

Bob

[Needhelp16]

Thanks Bob, and Julie I don't have my report. I'm going to get it tomorrow. The neurologist referred to them as spots. He didn't go into it any further. He said they were very small but didn't say the actual size or exact location on my spine or brain. He did say the locations of them are where you would see them in MS. So that's why I'm having the LP tomorrow. As for 10 yrs ago, I have no idea. I was young and didn't know anything. I just went with what they told me and left it at that. I know better now and looking back it didn't make any sense. This current neurologist thinks that might have been my first flare but obviously he can't say for sure. I lived in a different state back then and have no idea the name of the doc or the center where I had it done. I just remember sitting in the waiting room watching the World Trade Center collapse because it was on Swptember 11th!

[COBOB]

People with MS usually have to deal with two types of pain:

Nociceptive Pain - Pain caused by physical actions like muscle or tendon pulling as in spasticity.  

Neuropathic Pain - Caused by MS affecting the central nervous system involving the somatosensory system. Think of "short circuits" where touch or sensations of movement becomes pain.

Nociceptive Pain responds to analgesics and narcotics while Neuropathic pain responds the drugs that alter the "activation thresholds" (anti-seizure drugs like Lyrica, Gabapentin, Tegritol) in the nervous system.

Bob

[jujuminx]

Do you have a copy of your MRI report?  "Three small spots on your spine and several in your brain", as in lesions????  What does the dr mean, spots?  Usually a radiologist will describe and interpret what they are seeing on the image.

Is the LP just to confirm an MS dx?  IFyou want to know now, I would ask him/her.  Also, about the spinal tumor. What the heck happened to it if they didn't biopsy the tumor?  How strange.

Your Lp is coming up. How are you feeling?  How are your sx?

Hang in there.

Julie

[cutie4747]

I actually find the exact same thing - I need to wear pants to bed or else my legs will be worse the next day. Even if the room is warm, my legs still feel cold. Struggled with it last night since it was 30 C degrees in our bedroom - pants and no shirt - what a combo lol

[Deb61]

Most of my pain is from spasticity.  It's worse at night when I'm too cold or too hot.

[cutie4747]

I am glad I found this thread :)  I am undx but am under the watch of a neuro as am experiencing fatigue and bain fog, and had just gotten over a bought of shock-like sensations and vertigo in the Spring.
Lately (for the past month) I have been having ongoing muscle weakness/cramping/pain in my entire left leg (and sometime into my left arm). It is as if it wraps around the bottom of my foot and goes right up to my hip. As well, it also seems like it doesn't take much to fatigue it. I was out for a run and about 1.5k into in, my leg went weak and I hobbled home - and was limping for the rest of the day. I know it isn't an injury because it affects all my muscles and just aches.
Funny though, I can tell when it is coming on because I get an overwhelming bout of exhaustion about 2 hrs before it happens. Almost like clockwork.
Very very strange indeed :)

[Needhelp16]

It does make sense Sarah, and I think what is so frustrating is with autoimmune diseases in general the symptoms are so vague and common in other diseases its hard to distinguish if a symptom you are having is because of a current already dx autoimmune disease or are they from one yet to be dx. Since I'm not as familiar with MS as I am with my thyroid condition I guess I'm just looking for possibilities to explain my symptoms since my docs feel it's unrelated to my thyroid.

Thanks for the comment!

[Sparkysarah]

Hi again and I am sorry that you are experiencing all these confusing painful symptoms.
I am responding from personal experience rather than any medical evidence. I have had been in a relapse for the last seven weeks and have had a lot of pain in my arms and one of my legs (although the other leg experienced some neurological damage according to my neuro).

The pain that I felt in my arms felt like it was muscular as if I had been carrrying heavy books for days or had strained them from something. They really hurt and my neuro said it was to do with the nerves even though it felt muscular.  I took ibuprofen and all I can say is that whether or not you have MS, do not suffer and I am sure that if you just take some basic OTC pain relief it will help you. It is sometimes difficult to know is something is MS related or not but I tend to look at myself holistically and if my body is hurting then I am kind to it and treat the pain. I think most things are MS related..but just like people who do not have MS, we are likely to pick up any other illness or condition in addition.

Hope that makes sense and best of luck for your LP this week. be sure to keep yourself well hydrated before and after.

Best wishes

Sarah

[Needhelp16]

Sorry that last comment was posted too soon. Anyway how he knew it wasn't cancerous I don't know because no biopsy was done. I was young then, only 22, and back then I didn't know that doctors can be wrong.

For these reasons my current neurologist thinks I might have MS and scheduled me for an LP on thursday. I realize that a LP might not confirm anything. I guess I'm just trying to get all my ducks in a row so to speak.

[Needhelp16]

Thank you both for your comments. I just want to say that I haven't been diagnosed yet. I've had a MRI which came back abnormal. The neurologist said there were 3 small spots on my spine and several on my brain. The exact size and location he didn't say but when I go in for a LP on the 7th I will get the report and find out.

As far as symptoms, since mothers day this year I've been experiencing numbness and tingling which is painful in my hands and feet that progresses up to my knees, numbness and tingling in my upper lip, and urinary leakage.

I've had the numbness and tingling in my hands before, on and off for the last 3 yrs. I always contributed it to my thyroid problems but both my endocrinologist and neurologist said no because my thyroid levels are all normal.

I've had a full blood work up. Everything is normal. No vitamin deficiencies, no diabetes, no nothing. My ANA test came back positive but only slightly. Not anything you would see in lupus.

10 yrs ago I had an incident of leftsided extreme numbness and tingling. My family doc suspected MS. Had a MRI done and the neurologist said there was a tumor on my spine.  He said it was begign

[Millsinc]

Hi! I am sorry to hear this but I think I understand what you're asking and going through. MS is so unpredictable we may never have and get all the answers. Jen' there is book MS for Dummies (part of the dummy series). I'd suggest you both get a copy, it's a wealth of info on MS.

I'd touch back later. I am off to school. Hope you feel an ease soon.

Take care
~Mills~

[jen673]

Thanks for your post.  This is a great topic.  I am newly dx too and have the same questions.  Tell us a little more about yourself please.  I would love to hear your story.

I recently had a pain in my arm that feels like the muscle is torn but haven't injured it.  It intensity comes and goes.  Nightime is always worse.  Sometimes I have to use my other arm at night to move it because it hurts so badly.  Now I have a small spot on the bottom of my foot that hurts.  It seems as though we could have bizarre pains or sores from MS.  

My question is what can we do about them and how do we know for sure it is or is not MS related??  Also, do we call our Neuro about everything?  I usually go to my family doc once a year and that's it.  I don't see lots of docs or take meds.  What kinds of doc should we expect to see?  I wish there was a handbook for the newly diagnosed like "MS for Dummies".  Lol!

:) Jeny