Multiple Sclerosis (MS) Support Group
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SO SORRY FOR THE LONG POST DON'T KNOW WHAT ELSE TO DO !!! ~~Because my memory is so bad I'm gonna start from today and go backwards ! ~~~
I''ve been in what I call a flare for 1 1/2 mths now and think it's starting to calm alittle.
Symptoms Description
1) Headaches almost always Poss - my IH
2) PAIN ache,burning,stabbing,sharpe,electric shock feeling all
over , see below >
3) Feet cramps,tendons,numbness,walking on eggshell feeling
4) Legs Left caff ( charlie Horse ) sometimes lasts up to 3
mths, ankles painful throb & ache always
knees deep ache front,behind the knees burning,weak
feeling 98 % of the time. Legs from top to toes aches and
are weak,noodle like almost always. I get a pain just above the right ankle aprox. 4 in. feels like I've been hit there with a bat ??? wraps around. that pain has come and gone for 3 yrs now,can last 2 days to 3 mths.I had a bone scan it did not show anything was there . No other Fractions anywhere. DX'ed w/ RLS and widespreed spasms ( Spasms , face head,arms,legs,feet,feingers.NEW as of 1 mth ago a numb area above my left knee the size of me putting 2 hands spreed open to the outside of that knee.
5) Torso sharp stabs of pain, electric shock feeling in my ribs, stomach,neck. also have very sharp pain in my pelvic thought to have something to do with the 16 ft of shunt tubing but Doc says NO. SO What is it ???
Burning sensation on both hips w/ pain,throb. Lower back pain,sometimes,not always pain in lower neck and shoulders.
Arms) left arm from top at shoulder down gets very weak to the point that I can't lift it at all.Both arms get weak ,can't carry 1/2 gal of milk or even pick it up. Left thumb has a twitch on and off and can go on for hours or a few mths. I did 4 mths of PT 2 yrs ago for left side weakness thought to be rotater cuff.That pain keeps coming and going also. EVERY THING SEEMS TO CAME AND GO RAMDOMLY ... Right wrist has that carpel tunnel feeling this has been there from the start of all my sx 10 yrs ago. Finger cramp up all the timeAt any time day or night on both hands the 2 outter fingers up to my elbows go numb it never seems to last more then 10 15 mins or so. Hand and fingers seem to lock up.
On the inside of both arms from wrist to the bend of the elbows I get a painful sharp pulling feeling ... sometimes runs up the arm had swollin,sometimes just in random spots.
I do have swelling of the op nerve on the right side mostly but found alittle on the left poss due to my IH,Migrains, White matter lessions Or White matter Disease as the Doc says.blurry vision,sometimes double, OUT of nowhere,just hitting me one day 12 yrs ago ( sinus problems really bad.The glands on both sides of my neck had swollen to the size of large almonds,over a 1 yr period & after 4 steriod shots they finally went down and never to return just get really sore.
5 yrs ago I had my first bout with vertigo at that time I was also having trouble with swallowing that went on for about 6 mths but havent had trouble with that in awhile.
about 2 or so weeks ago as I went to bed I had a strange thing happen. It could have been the MS hug as I now know of but not sure.from my neck down it felt tight and dis-connected.. not sure how else to say it.
One of my BIG problems the last 2 yrs is my memory ! Short term,I can't walk from one room to another and remember what I was doing.It's to the point of pure frustration ! I can't remember where I put things,or if I have a conversation 85% of the time I don't remember having it ! That scares me ! Sometimes spelling words,Or I can think of what I want to say but it don't wanna come out.or it comes out backwards.
I have always had a problem with cyst on my ovaries many every mth.Had an ovarian eruption 6 yrs ago 3 days in the hospital.
My White Cell count is ALWAYS high no matter what EVERY TIME I've had my blood drawn for the past 11 yrs ~ 10 is the normal on there test mine is always 11, or 12 or as high as 16 ...
Balance I have none,tend to want to fall to the right alot,or my knees feel as if they want to bend backwards causing me to fall or almost fall.I run into walls ( don't ask)
I also feel as if I'm taking a step up but no step there ??? So even though these things come and go... I'll call this my down time not everything goes away my legs seem to always bother me weak,sore tired,heavy ect... pain levels never seem to be less then a 4 or 5 and thats a good day..
I know I'm missing things but wanted to get this up and share some of you asked for and maybe can give your opinion,suggestions,poss. input... This can't all be just fibro and the fact is this seems to come be around for any where from hours weeks usually 3 to 4 mths to subside only to return in as little as a few days,weeks but no more then 3 - 4 mths to start ALL over again ...
HELP PLEASE !!! Thanks Be Well Angie
I''ve been in what I call a flare for 1 1/2 mths now and think it's starting to calm alittle.
Symptoms Description
1) Headaches almost always Poss - my IH
2) PAIN ache,burning,stabbing,sharpe,electric shock feeling all
over , see below >
3) Feet cramps,tendons,numbness,walking on eggshell feeling
4) Legs Left caff ( charlie Horse ) sometimes lasts up to 3
mths, ankles painful throb & ache always
knees deep ache front,behind the knees burning,weak
feeling 98 % of the time. Legs from top to toes aches and
are weak,noodle like almost always. I get a pain just above the right ankle aprox. 4 in. feels like I've been hit there with a bat ??? wraps around. that pain has come and gone for 3 yrs now,can last 2 days to 3 mths.I had a bone scan it did not show anything was there . No other Fractions anywhere. DX'ed w/ RLS and widespreed spasms ( Spasms , face head,arms,legs,feet,feingers.NEW as of 1 mth ago a numb area above my left knee the size of me putting 2 hands spreed open to the outside of that knee.
5) Torso sharp stabs of pain, electric shock feeling in my ribs, stomach,neck. also have very sharp pain in my pelvic thought to have something to do with the 16 ft of shunt tubing but Doc says NO. SO What is it ???
Burning sensation on both hips w/ pain,throb. Lower back pain,sometimes,not always pain in lower neck and shoulders.
Arms) left arm from top at shoulder down gets very weak to the point that I can't lift it at all.Both arms get weak ,can't carry 1/2 gal of milk or even pick it up. Left thumb has a twitch on and off and can go on for hours or a few mths. I did 4 mths of PT 2 yrs ago for left side weakness thought to be rotater cuff.That pain keeps coming and going also. EVERY THING SEEMS TO CAME AND GO RAMDOMLY ... Right wrist has that carpel tunnel feeling this has been there from the start of all my sx 10 yrs ago. Finger cramp up all the timeAt any time day or night on both hands the 2 outter fingers up to my elbows go numb it never seems to last more then 10 15 mins or so. Hand and fingers seem to lock up.
On the inside of both arms from wrist to the bend of the elbows I get a painful sharp pulling feeling ... sometimes runs up the arm had swollin,sometimes just in random spots.
I do have swelling of the op nerve on the right side mostly but found alittle on the left poss due to my IH,Migrains, White matter lessions Or White matter Disease as the Doc says.blurry vision,sometimes double, OUT of nowhere,just hitting me one day 12 yrs ago ( sinus problems really bad.The glands on both sides of my neck had swollen to the size of large almonds,over a 1 yr period & after 4 steriod shots they finally went down and never to return just get really sore.
5 yrs ago I had my first bout with vertigo at that time I was also having trouble with swallowing that went on for about 6 mths but havent had trouble with that in awhile.
about 2 or so weeks ago as I went to bed I had a strange thing happen. It could have been the MS hug as I now know of but not sure.from my neck down it felt tight and dis-connected.. not sure how else to say it.
One of my BIG problems the last 2 yrs is my memory ! Short term,I can't walk from one room to another and remember what I was doing.It's to the point of pure frustration ! I can't remember where I put things,or if I have a conversation 85% of the time I don't remember having it ! That scares me ! Sometimes spelling words,Or I can think of what I want to say but it don't wanna come out.or it comes out backwards.
I have always had a problem with cyst on my ovaries many every mth.Had an ovarian eruption 6 yrs ago 3 days in the hospital.
My White Cell count is ALWAYS high no matter what EVERY TIME I've had my blood drawn for the past 11 yrs ~ 10 is the normal on there test mine is always 11, or 12 or as high as 16 ...
Balance I have none,tend to want to fall to the right alot,or my knees feel as if they want to bend backwards causing me to fall or almost fall.I run into walls ( don't ask)
I also feel as if I'm taking a step up but no step there ??? So even though these things come and go... I'll call this my down time not everything goes away my legs seem to always bother me weak,sore tired,heavy ect... pain levels never seem to be less then a 4 or 5 and thats a good day..
I know I'm missing things but wanted to get this up and share some of you asked for and maybe can give your opinion,suggestions,poss. input... This can't all be just fibro and the fact is this seems to come be around for any where from hours weeks usually 3 to 4 mths to subside only to return in as little as a few days,weeks but no more then 3 - 4 mths to start ALL over again ...
HELP PLEASE !!! Thanks Be Well Angie
Alma
hang in there! If you can get them to consider MS maybe they'll give you a round of steroids to calm the flare
I was really limping too with my right leg my foot slapping as I walked.
This dizziness is something else I feel I am really losing it sometime times. and will pass out and not come too. it is really scarey! My head feels reall funny. Its better today thank goodness but I read your struggles and thoughts go out to you. Hang in there. MS is rough take care!!! This is all new to me never had bad
symtons really until lately.
Now I have had a C-spine Doc said it showed nothing hmmm.
I also have had a nerve test no pinched nerves to answer for the pain and weakness in my left side hmmm...
I DO have 2 other MRI's for her to compare to ... I've been told there's no spinal lessions ..
I have a ? --- When something new happens that has never befor as far as a sx does that mean there's a poss. new lession ?
? again Now you say a spinal tap what are they looking for ?
I do have a shunt it is installed into my lower spine,would it be the same to pull the fluid from the shunt it would actually come out of the valve witch is located in the front of my stomach within the tubing ....
? again -- I do live in south Fla. It's been really hot for the last 2ish mths could this poss. be why my pain and hurt's fatigue never really go away ????
LAST but not least .... STEROIDS the last few yrs them seem to be different when I take them The only work when I'm on them when I come off of them they don't seem to help any longer ,,Where in the past yrs befor that after taking them I would be good for at least 6 mths or better but not any more Could this be all part of MS ? Any one know why this is ?
Thank you all so much I go through all of this and like some of you have been told many things even that no MS thats not poss.I've been told in the nicer of ways I'm crazy oh yeah that to ... So Just glad to be getting some of all this out .... be well ....