Types of MS Pain..Please describe yours

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Postby jimmylegs » Thu Jan 08, 2009 8:30 am

most of my fam is in the UK or at least started there - me and my bro are the only canucks :)
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Postby tt89 » Thu Jan 08, 2009 8:54 am

Ok..Headed to the Neuro Docs....Should be fun. They think I've been on shots the last 6 months....They won't be happy I have not...but I'll remind them about my MRI..looking BETTER

Im sure they will find a way to talk SHOTS with me....UGH

Update soon
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Postby jimmylegs » Thu Jan 08, 2009 9:01 am

lookin forward to hearing your next update tt :)
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Postby jimmylegs » Thu Jan 08, 2009 9:25 am

tt i had a read back over older posts re magnesium, back in early sept - you noticed some improvement before, did the mag run out and then your pain returned? and all along you haven't been able to really sort out the d3 level?
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UPDATE

Postby tt89 » Thu Jan 08, 2009 9:24 pm

OK Here is goes
Jimmy..Yes I have had a constant Mag and Vit D issue but nothing really helped...they'd go back up but then drop again.. :-( as well as Potassium.

Fever still present...they did a U/A to make sure there is not UTI..I would not know if I had one or not. I have to potty 100 times a day/night and to the point I don't get good sleep but there is also an issue of a "Virus" due to being overseas.

Leg pain- may not be an MS thing..the muscle part/cramps yes but the nerve thingy..no because it generates in the foot....like the back of my heel... going to see Ortho for that. She referred me to one.

Told them about NO MEDS. They sort of figured I'd go off them as I was just not sold on them from jump street and to me I feel better OFF them. I got the speech about several of their patients who are my age group and in Nursing homes because they cannot walk, do this or that..as a result of NOT taking the shots. Not sure what to think about that.

I saw my MRI...Looks really good on the left..the other spot is unchanged..

One Nurse I know from somewhere else brought up this point of "Are you SURE you have MS...I mean two spots does not qualify a diagnosis of MS" but thats what I've been told over and over by the docs..I do have MS. Confirmed with MRI, Spinal Tap ( positive for Onco Bands..etc).. She feels I have some sort of Neuro Virus....

Ok..next..They want me to try a small amount of Baclofen again at bedtime... Not sure yet about that

Im on my Vit D, B and the Mag now..and the pain meds as needed. They remarked how well I handle my pain..and how little pain meds Ive used in the last year. They also said "don't stay in pain just not to use a narc med for pain..if you need it take it" Well I'll be the judge of that...and how much I need/use...I don't like that stuff to start with.

She felt my walking was stiff but today was a not so good day. She did say my neuro tests..reflexes and all were good.

Blood pressure up some. I think that was stress of being in that place...

They are going to have me repeat bloodwork....in a week..and will let me know about the U/A test. They did do blood cultures..

Oh and...No Gout....Uric Acid was perfect...so thats good news..she attributes that nerve pain to either an injury from the few falls I have had or the MS...but we will see what Neuro says and have an MRI done for the leg..

Can't think of anything else...but if I do I'll post


Thanks to all


Oh...they SERIOUSlY want me back on meds. They said only Copaxone or they will consider Tysabri....due to my not being able to handle Betaseron/Interferons...no more of that..not even trying Rebif and Avenox they do not like
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Postby jimmylegs » Fri Jan 09, 2009 6:13 am

hey there tt, wonder what's constantly dragging your mag d and potassium down. other than your body using those nutrients i mean. have you ever had a full nutrient panel done? that could turn up a problem or two. i never really expected, when i asked for mine, that i was going to come back so crazy low in zinc.

what was the uric acid number, with units? this is important because it's one thing to have high uric acid and gout, and another thing to have "the ms average" low uric acid. which my docs also said was 'perfect'. if you have ms average uric acid, it may be something to consider working on.

what's the d3 number over time in nmol/L or whichever units your lab uses, and how does it relate to your supp regimen over time?
what have they got you on for an rx d3 daily regimen at this stage?

good to see an ortho over the foot for sure.

in the meantime, enjoy your natural calm :)
JL
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Postby remnants » Fri Jan 09, 2009 5:53 pm

Pain is my major issue. Its actually what led to my diagnosis. I have allodynia or other pain. This is a hypersensitive sensation. I feel it in my hands, feet, abdomen, and back. It feels as if someone took 60 grit sandpaper and sanded my skin off and that's on a good day. On a bad day, it feels like they used 40grit sandpaper. It hurts to shower with a shower head designed to mimic gentle rainfall, hurts to get dressed or cover with blankets. Pretty much anything, even the slightest contact is experienced as pain. This pain has been constant for more than four years now. This is not the same as the tingling, pins and needles or burning pain most commonly associated with MS. I get those too, but they're not as disabling to me. I read one man's account of living with allodynia nd he wrote, "My allodynia imprisons me." I couldn't put it any better.
Every morning I awaken torn between the desire to save the world and the inclination to savor it.
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Postby tt89 » Fri Jan 09, 2009 6:44 pm

Oh Remnants...Im so sorry you go through such horrible pain...that sounds terrible..isn't there a thing they can do to help you?

Ok folks.. Help the NURSE that is still CLUELESS about mS

I got up sick this morning..I run a low grade fever constantly and then it spikes....but besides that..

and I get this OFTEN....I get where my legs feel so bad...it feels like I want to stretch them but I can't...and just feel horrible..THey do tingle and burn some but it feels like I want to stretch them but I cant....and I just hurt....I again cannot explain it.....its so frustrating...but today was one of the bad days I talk about. I had to lay on the couch for a few hours before I could do anything...

Is that what you all feel too?

As for the fever..Still clueless.....my U/A was PERFECT. NO UTI...

any other thoughts?

I had an MS Nurse tell me she was stunned I was diagnosed with MS...because I only had two spots, one which is almost gone now..and that does not give them enough criteria to say MS..is that true?

What else could it be? Spinal Tap was positive for Onco Bands...

UGH!

Thanks everyone...
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Postby tt89 » Sat Jan 10, 2009 2:36 pm

I woke up today feeling BETTER...NO tightness, soreness nothing..I got out of bed expecting the SAME pain..

Only my right leg/ankle is a little sore and we think its from one of my falls and will be looked at this week BUT overall

I FEEL BETTER TODAY....and yesterday I felt cruddy!

I think its the magnesium....

Oh THANK YOU THANK YOU Jimmy Legs!

More soon
T
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Postby jimmylegs » Sat Jan 10, 2009 6:35 pm

no probs tt, glad you can drink it all right!
now i just wonder, for you and for me both... how can we get it to STAY?? surely we don't have to drink mag tea all day every day just to stay relaxed???
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Postby tt89 » Sat Jan 10, 2009 6:36 pm

You know GOOD Question
Im almost afraid to STOP drinking it
I really still feel good tonight
Well its 2036 hours here. Im in North Carolina in the USA. Are you stateside or overseas?
Thank you SO much for helping me with the mag stuff!
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Postby jimmylegs » Sat Jan 10, 2009 6:48 pm

heya tt :D glad you are still feeling good. magnesium is a life saver huh! i'm in the same time zone as you but up in the great white north eh. just got home from an 11 hour shift at the ski hill i'm still in my snowpants heating up some FOOD
but i already had a mag tea ;)
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Postby Dixie_Amazon » Sun Jan 11, 2009 9:51 am

My pain feels like burning pins and needles. Usually in patches in various locations, but I have had episodes with it all over from the neck down.
Dennise

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Postby jimmylegs » Sun Jan 11, 2009 6:13 pm

heya dix, dx limbo suuucks. what other symptoms do you have besides the pins and needles/burning? if you want any advice on symptom management related to nutrition there are a few folks on here myself included :)
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Postby Dixie_Amazon » Mon Jan 12, 2009 2:00 am

I have dizziness, brain fog and some girdling pain in my ribcage. Oh and fatigue, how could I forget the fatigue?

After MRIs (non-specific white spots), EEG (slowing of some parts of the brain) and a Nerve Conduction study (carpal tunnel in both hands, nothing else. My Neuro is taking a wait and see position. I am thinking getting a second opinion.

I am interested in supplementation. I have already started vitamin D. My Endo tested me for that and I was very low. Fish Oil makes me sick but I did start on EFAs. I also take B-12 and am thinking of adding Ginko.
Dennise

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