Leg/bone pain

[rendean]

I've asked something similar on here before regarding bone pain. At the time the pain was attributed to a low (6) Vit. D level. Levels up in the 30s last time it was checked , just finished the mega doses of 50,000 IU.

Any way, since this new  paraesthia involving  my legs, usually a burning or hot water running down the leg sensation, my neuro added to my poly pharmacy and the problem seemed to be solved. Now, the sensations have returned full force without any appreciable reason for the relapse.

My question is two pronged. (1) Is this  same symptom (leg pain) and relapse still occurring 5 months later and (2) does anyone else have this sort of pain and is there any other cause (other than the erroneous assumption that it was due to Vit. D levels)?

Thanks for anybody's insight or thoughts regarding this........

Ren

[BOK2Bjan]

U spoke of "the lesions that are on the nerves themselves, not the lesions we may or may not see on MRI".  Question - I assume u r still referring to the nerves within the CNS, though.  I know we can have damage to nerves anywhere in the body - (I also have residual numbness on epidermal layer of abdomen due to colon surgery a few years ago - w/ some regeneration) but w/ MS, diagnostically, we're only dealing with nerves w/in the CNS.  How do the damaged nerves or their sheaths themselves differ from the visible "scar or plaques" we see on MRI.  Intuitively, I know the difference, but would u explain ur intended meaning for my tired brain?  And, today, boy is it tired!!!  

My assumption (dirty word) is that u mean the CNS nerves that r damaged,as opposed to the scar tissue that has replaced damaged nerves (which we see (hopefully) on the MRI)  There r so many stages of damage - all theway to "GONE", that it's sometimes hard to sort out.  That'swhy I haven't tried to correlate lesions to symptoms.

Thanks, one handed wonder, jan

[jensequitur]

Yogurt's good, and milk is too - cheese tends to be high in fat, so you'll end up with too much fat for the amount of calcium you're getting.  I would try a calcium supplement, preferably something with citrate so it'll absorb better.

[rendean]

Thank you for the explanations! As usual you have clarified the subject and made it easier for us to digest.

I especially like the info about the blurring of lines between relapses and "new" normals. It helped to clarify what my MS doc was trying to tell me but I wasn't comprehending due to the pain distraction.

Regarding the increased calcium intake.. is there a suggested amount? I started eating more yogurt and made cheese my  bedtime snack  to have before nighttime meds. Would this be enough or are we talking 3-4 glasses of milk too,

Thank you to all who posted. Every wish and question(DB) was appreciated.

Ren

[Quixotic1]

Well, if I were being conscientious and good I would separate all the comments and questions and answer them individually.  But, instead I am going to breeze through and make some comments about the whole thread.

First, is ongoing bone pain a part of a new relapse or an ongoing old one?  I agree with your neuro.  Defining relapses is more of an art than anything else unless you have someone who is pretty assymptomatic in between them.  A new relapse can be the appearance of new symptoms,. The reappearance of old symptoms you have had before or a sudden worsening of ongoing symptoms.  You can see that the last two can merge and get fuzzy.  When a relapse leaves you with a lot of symptoms, it becomes unclear when it stopped and when the "stable period" of "remission" kicks in.  The word remission implies that everything went away ("Her cancer was in remission.")  but in MS it can mean just that things stabilized at nearly the same level for a while/

Further confounding the picture is the day to day variation in our "stable" symptoms.  For many of us it seems the picture is never really stable.  So you have to take a big, overall impression.  A good MS neuro has seen enough patients (and learned from them) to be able to put this together better.

Can you have bone pain in MS?  Absolutely.  It would be like any other neuropathic pain.  If there is a sensory nerve to it, then it can be affected with a demyelinating lesion and "act up."  All the bones have a sheath of fibrous tissue that is rich with nourishing blood vessels and nerves called the "periosteum" which literally means "around the bone."  Those nerves can act up also.  Just think of the incredible pain when you get whacked on the shin.  There is very little cushioning over the periosteum there and it is those periosteal nerves that are screaming.

Do all areas of parathesia or neuropathic pain have a corresponding lesion?  Yes,  they have a place on the nerves that serve that area that has a lesion or damage.  Here we are talking about the lesions that are actually on the nerves themselves - NOT the lesions we may or may not see on an MRI.

Yes, if that same lesion becomes active the same area will feel painful or weird again.  Every nerve is attached to the same area all the time.  You don't really see "rewiring" out in the peripheral nerves, except over long periods of time around a place of injury that happened right AT the site.  Example, I had abdominal surgery that left a big 5" completely numb spot on my tummy.  In the 26 years since the surgery the numb spot has become smaller as there has been a little growth of new nerve endings into the area.

A given lesion in the CNS will always cause the same sensation or motor dysfunction.  But because lesions tend to grow through new areas of inflammatory demyelination we often feel changes in the symptoms.

Contrary to my stances a year ago, there is now studies that use huge doses (44,000 IU daily) of Vitamin D which seem well tolerated in MS and may well affect the course of the disease.  I apologize to anyone that I countered before on this topic.  I will be reporting on the latest study soon.  When taking huge doses, one wants to take some supplementary calcium so that the body doesn't draw it from the bones.  It appears that one doesn't need to take large amounts.

Quix

[michelleric]

I am so sorry you are struggling so. My heart is with you and I am thinking of you.  Nice hubby to change the sheets for you...sweet.  I hope the meds will stop this awful relapse for you.  Been to long in the making!

Sleep well,
Michelle

[rendean]

Thanks for the responses.
Went to my local neuro who prescibed Decadron (previous hives to solu-medrol) and Lortab with instructions to take the Lortab around the clock and the decadron every 12 hours. If no improvement in 3 days then he's going to give the IVSM a try.

In the meantime, My MS neuro's nurse called me back this morning after I had placed a call yesterday afternoon. She said she would relay the info regarding the decadron etc. to the doc.

Neuro calls me back about 2 hours later to discuss the game plan and he is in total agreement except he added bed rest to the mix. Then the nurse called me back to tell me that the local neuro was going to do IVSM probably on Friday. Guess, his mind is made up in advance. But, anyway, nurse wasn't sure doc had called and she wanted to be sure to relay the info. I do have a great MS neuro!!

To Jan:
Sorry to hear about your hand, I'm sure it beats my bone pain by a mile. I also called my physical therapist and asked her opinion. Her thoughts were that if I didn't have trigger points (I don't) or tight tendons (I don't-she taught me how to check during therapy) then massaging might feel good but probably would help. She also thought about spasticity  but without the muscle tightness and soreness, she doubted it. She told me call her back in a couple of days and she would do some research and maybe call one of her professors and ask.

To db: 50,000 IU weekly x 8 weeks, just finished my last one 4 days ago, then 2000 IU daily. the labs done 3 weeks into this showed my level had gone from 6 to 35. Liver enzymes were checked and were fine. I thought originally that the Vit D did have some good  effects but then looked back and realized I also did a prednisone burst and added Trileptal to the mix during the 8 week time frame so who knows if it did any good. No bad side effects noticed. Wasn't told to increase calcium but it was checked along with parathyroid levels and a slew of other things. All were fine. Did I miss any questions??:-)

Well, it's off to bed and another Lortab, which really doesn't help with the pain but at least I really don't care now ;-) Hubby has just changed the bed linens so I'm more comfortable-He's a keeper too!

Thanks,
Ren

[BOK2Bjan]

hi - cant use rt hand so will sound like robot - see my answer to "what's up this week". anyway i 2 have leg pain - feels like bone pain.  low d - also put on 50k doses - i believe i have spasticity - have foot drop - but like u - pain is deep ache down center of leg - hard to massage - doesnt touch it. did find muscles that hurt but still have this deeper ache.  plan 2 ask my neuro thursday but she isn't good about discussing symptoms.  await insights u get from ur neuro.  jan

[doublevision1]

Hi Ren,
sorry to hear about your pain, sounds miserable.  I can't help with your questions but I had some for you:  how long were you doing the mega dose of Vit D?  Is that 50,000 IU daily or weekly?  Did you feel any effect from it (good or bad)?  Did your liver enzyme levels escalate?  Did you need to increase your calcium intake accordingly? What dose are you on now?  Do I ask too many questions??????  :)

db

[jensequitur]

I've had pain that I thought was somehow in the bone, until my hubby found the muscle that was causing it.  Some really weird spots!  Back of my hand, inside of my right hip, around the shin...

[rendean]

Thanks for the response. I have already tried to parse it out according to what medications relieve it, as you suggested.

Tried Neurontin and Lyrica in the past. They initially worked but only added to the cog fog so we switched to nortriptylin and recently added Tegretol which helped initially.

One day I took one of the Vicodin ES my naive GP gave me for occipital neuralgia. I knew it wouldn't  touch neuropathic pain and it did not help the leg pain at all. Also, took an extra Klonopin (on another day) which I take for muscle spasms...didn't touch it either.

As my husband has said, jokingly and did not offend me at all, that if I was a horse they'd have to shoot me. Even hubby's massaging my legs for hours doesn't help the pain. Nice massage though :-)

Thanks again,
Ren

[essdipity]

MS pain can be so deceptive. For months now I've had distinct types of pain in my legs,  sometimes simultaneously. I have lots of burning parasthesias, 80% of which is on the right side, and severe aches that seem to be muscular in the hamstrings on both sides.

I'm thinking that my muscle pain really is just that. I don't have excess tone, so it's not spasticity, but I do have documented muscle weakness, so maybe the aching comes from using muscles that just don't have the old pizzazz.

If high doses of Lyrica or Neurontin won't work for you (not sure of your status there), then perhaps you need more evaluation. You possibly need a regular pain reliever, NSAID or stronger, or a muscle relaxant of some type. This could be the kind of situation where you'll know the source by whether or not the medications are effective.

Wish I could help more.

ess

[rendean]

I've considered spasticity as a possible culprit. I have a call into neuro regarding same. What ever it is it needs to retreat from whence it came. I'm over it!

Thanks for input. Do you experience spasticity that could mimic bone pain?

Ren

[jensequitur]

It's hard to tell exactly where the pain is coming from, sometimes.  With something that you call 'bone pain', I have to wonder if maybe you're experiencing spasticity.  It can strike any muscle in your body, including ones you didn't know you had.

[Lulu54]

you're a sweet person to tackle mine too - you don't have to do that.

It sure would be simpler if this disease have clear signals.  Or a checklist that we could refer to when we have questions.  I get pretty confused as to what is MS and what is age and what is other processes going on.  

have a good Monday,
L

[rendean]

Per my neuro, who I trust immensely, it's hard to tell yet if I'm still in a flare or if I have residual damage (i.e. a lesion).   I was just curious. Patience is NOT one of my virtues...could blame it on the red hair...

Thanks for your input. I plan on calling Dr. L tomorrow and will receive a response promptly at 3:15 , his call back time. I'll try to remember to incorporate your question in with my thoughts as well.

Rem

[Lulu54]

Ren, a good question that makes me wonder about something that I've been pondering and I'll throw it in here because I think its along the same thought.

I had about a 3 week almost continuous episode of creeping, crawling sensation on the same spot on my leg.  It is now stopped.  would that area be directly tied to a specific lesion and if  that lesion flares again would  that same spot will again be creepy, crawly?

At least I think that fits in with wondering about same symptom and relapses.  

Lulu