New here and need help?
 

Can anyone help me please? Any ideas???? Here are most of my symptoms:
constant, moving pain and tightness in legs
burning pain in hips and lower back sometimes
weakness in legs-can't ever walk for long
lightning pains in ankles-almost all of the time
cannot stand still for any period of time
not lifting feet high enough (though I think I do) going up stairs so I trip
sitting hurts after a while and then walking hurts after a while so have to sit
tightness around ribs and shortness of breath sometimes
weak but not painful arms
hands often lose grip and I drop things a lot
dry eyes, dry mouth sometimes
can't sleep from pain because something always hurts
total, complete lethargy, feel like I have no energy at all
Doctors say there is NOTHING wrong with me-one today told me it's STRESS!!!!!!!

Hi Ami. So sorry for all your pain. Have you seen a Neurologist?
I suggest you do.:hug:

It could be fibromyalgia-I was dxd with that in mid 80s...later dxd with MS in late 08...

Are you on any meds for this? If it's fibro, Lyrica is usually what docs prescribe. Drugs like zanaflex or baclofen are precribed for spasticity.

Make sure you write down your symptoms with dates of onset and dissipation for your doc.

And be your own advocate-yes, stress increases symptoms of both of these diseases...but still symptom management through exercise, stretching, and rest and good nutrition are ways to help also.

Keep us informed and don't give up-keep digging for answers, even if you have to go to a neuro or rheumatologist.

Yes I have been to to both of those doctors. Blood work came back ok. Nerve tests-normal. The MRI of my neck didn't come back but nobody seemed to care.
One of them gave me Cymbalta but I can't take it and go to work-it made me very dizzy. I have been taking Prednisone and it works great but have been told I can take it no longer. They told me yesterday to take CoQ10 instead. Really???

Have you had your Vitamin B12 levels tested? It has been suggested that levels below 400 may produce symptoms of deficiency in some individuals.

Symptoms of Vitamin B 12 Deficiency - YouTube
http://www.youtube.com/watch?v=p0da1xrELcA

Vitamin B-12 warning: Avoid cyanocobalamin, take only methylcobalam
http://www.naturalnews.com/032766_cy...amin_B-12.html

Hope that you get some answers and feel better.

With love, Erika

Ami-

Welcome to NT.

Regarding the MRI of your neck: You paid for it and endured it. Get the report.

ANN

hi and welcome to NT,
i agree with getting the report of your mri. you may have to go there and sign a release. ask for a copy of the disc also. any dr in the future may want to see it.

start collecting a medical file on yourself. ask your drs for copies of your test results. it will all be helpful in the future.

i absolutely hate to hear when drs tell their female pts their problems are due to hormones and/or stress. that's a total cop out! it's a replacement for drs doing their jobs and being diagnosticians. can you tell i hate that????

i am all for you getting another opinion from another neurologist or MS specialist. i don't know if you have MS but i can relate to some of your sx's (symptoms).

your dr didn't want an mri of the brain? it's part of the CNS (brain/spinal cord). did they do it with contrast? (start an IV and give you medicine).

the sx journal is also a good idea. i can help your dr see your sx's and a timeline.

please stay in touch with us.

Thanks everyone. I got the results from my MRI of my neck. It says I have herniated discs and prominent stenosis from c4-t1. While my neck can be stiff I never have neck or arm pain and seldom have headaches. If there were lesions would the report call it that?

Yes, While herniated discs and/or stenosis are no fun either, it is probably better than MS.

With love, Erika

C4-T1 do a search for "Dermatomes" you'll find charts showing what levels effect where on body. Do it.

MRI of c-spine but what about the head??? If they didn't scan brain have them do so asap & get it on disc.

Good luck!

BTW- Cymbalta - my grandmother was given it for aches pains anxiety ect. Took it for 2 days then thankfully realized what it was doing to her.
It almost put her in the hospital. She got sick and worse- was seeing things! Her friend's been taking it for yrs so once again, every body's different.

Funny thing is I have NO pain in my head, neck, arms or hands. But my hips, legs and feet never stop hurting. If I don't take prednisone I can't walk more than a few feet at a time. My biggest complaint is the horrible lethargy I experience where I don't do anything for days and days. I hate it!
I asked for the MRI of my head and the doctor agreed but it didn't happen-I don't know why. I am so lost as to what is going on with me.

i'd call the dr's office and find out about why they didn't do the brain mri.
insist you want it done to complete the picture (no pun intended).
and yes, if there were lesions that's what the report would have called it.

i'd schedule another appt with your neuro (after the mri matter is settled) and ask him to explain all this to you and come up with a plan of action. try to take a friend or family member with you to help you advocate, get answers and be a 2nd set of ears.

Honestly my neuro really is not a favorite of mine right now. He basically shooed me away telling me I need maybe a skeletal specialist but had no one in mind. I pick up the disk tomorrow and after I get a good look I'll schedule with my primary to see where we go from here. I am weaning from prednisone and a lot of the pain and tightness is coming back in just my legs and feet as usual. Maybe if I walk in with a cane and brace (I have needed both at times) I will be taken more seriously.
I am scared to death of Cymbalta. I understand it's only effective for a year or two and coming off it is real hard to do. These doctors are abhorred that I take prednisone but it really helps a lot with only minor side effects for me. And isn't that the idea of medication???
The worst part though is this drowsiness that will become total "useless blob". That's the part of whatever this is that I can't stand and the part I don't understand the most.

About the COq10. My daughter had Chronic fatigue syndrome for several years which can have a lot of the symptoms of MS, fibromyalgia. I can't say it helped her a whole lot though. Get family member on your side that has more of the tolerance that can fight for you.

Here's some images of lesions for you http://neurotalk.psychcentral.com/thread177183-4.html

Software that comes on disc should be ok but I like http://www.onis-viewer.com/ProductInfo.aspx?id=19

Spend a few days or nights playing with it. You'll amaze yourself.

I take 2000mcg's B12 when I wake, B100 after lunch. Just started taking 200mg caffeine with the B12 and those 3 surely keep me going all day. Exercise can't be stressed enough to get your wheels turning.

Thanks! It may take me a while to figure it all out! I have an appt with my primary on the 12th to see where I go from here. I am e=weaning myself off prednisone (again) and am really starting to hurt but NOT where this MRI shows I should hurt. I am also sleeping more and feeling wrung out all day again. Yuck.

My suggestion is get a referral for a new neurologist. You need a second opinion. The neurologist you have now seems incompetent and frankly not very sympathetic. Good luck!

What you're describing reminds me of a friend who has polymyalgia...do research on that also.

It can be very frustrating when you are just trying to get an answer to what is going on with your body and no one can figure it out:hug::hug:

If you see something like "punctate hyperintense areas", that would be radiologist-ese for lesions. If they are talking about stenosis in your neck and spine, and you are having peripheral symptoms, I would lean towards spinal compression as an explanation rather than MS in the absence of an MRI of the brain showing lesions.

Keep in mind, my opinion is worth exactly what you paid for it. Get the reports, read them, google them and ask questions here...but most of all, go back to your doctors and ask them to explain what the reports mean once you think you know what they mean. If you aren't satisfied with their explanations, go to another doctor and try again.

Thanks again. What throws me off are two things-the pain is ONLY from my waist to my toes (contradictory to my neck MRI) and this pain (these pains) are always moving. Standing still for more than a few seconds is impossible. Walking short distances is painful but far more exhausting. Sitting for a while hurts so I have to get up and walk. I am always tired, tired, tired if I sleep a lot or have one of my frequent no sleep nights. Going down stairs hurts more than up-ramps are killers. My eyes get blurry and after some time clear up. I itch like crazy and often wake with ugly red splotches on my arms and hands from scratching in my sleep. I lose my balance often and trip over things that I thought I had raised my foot high enough to clear it. I have also been trans-versing numbers and letters lately.
Sometimes my upper back and sides feel tight (like a too small bra) and makes me breathless.My hands don't ever hurt but don't hold things and I often miss when reaching for something. My arms never hurt but sometimes get so weak I can't lift anything. y eyes and mouth are very often very dry and I need OTC remedies. I lose words a lot, sometimes in the middle of a sentence. If I get a little too warm I go into full overheat, feel awful, and it takes a while to cool down.
There's most of it. Crazy right?

BUT blood tests show nothing, nerve tests are normal and prednisone at a mere 10 mgs fixes ALL of it.

I don't think you are crazy.

How old are you? Some diagnoses occur in different age groups. And who put you on the prednisone and what was the given reason?

I am sorry for your suffering.
ANN

Thank you Ann. I am 55. These symptoms have been on and off for many years and now are all of the time.
I was given prednisone by my primary doctor ONLY for asthma. All of the doctors I have seen seem surprised when I tell them it fixes everything for me. I have never been prescribed prednisone except a few times for asthma/bronchitis. But there are other ways...
I have done a lot of reading about it and while I understand the risks of taking it I feel the risks of a lot of what is prescribed to me for this (which don't fix all) are just as scary.
Karen

I would ask the primary care doctor if you can continue taking the 10 mg. prednisone every day if you feel it helps you. It's not going to kill you to take it for a few months if it will help you feel better (while you look for that second opinion new neurologist!) Many people with different autoimmune disorders have to take prednisone every day. Just educate yourself on the side effects. You might get a second opinion that helps you figure out what's going on...in the meantime I see no harm in staying on prednisone if it helps. Good luck.

Ami-

Have you read about polymyalgia rheumatica? It most often occurs at 50 and above and is managed w a small dose of predisone- even 5mg.

Steroids- even small doses- have major side effects. You should be under someone's care while on them. Be thee careful.

Good thing about Polymyalgia rheumatica- it may go away completely after 2-6 years.

Best to you, ANN

Levels
 

B12, Folate, Iron, D3, RBC, WBC, HGB levels??

Don't say your bloodwork is fine if you haven't checked all of these.
Feel better.

Also how about a little ccsVI aka blockage going on somewhere?

Thanks Eddie. I never heard of that before bur after checking I do fit those symptoms a little too well!
Yes I have had all those blood tests many times and they fluctuate-often wbc is too high and sometimes bilirubin is too high. Occasionally potassium drops low. And folates are too low one time and too high another. None of these occur together but jump out one at a time.
My primary, who is a woman, has told me that some doctors believe that some people run low on cortisol and I am an obvious victim but because there is no real tests to prove it she cannot prescribe prednisone often.
It has made me gain weight and raised my sugar and they both seem to have leveled off but I'd rather treat the sugar and live overweight than be skinny and lifeless. No other side effects.
There is , I have been told, arthritis in my knees and so that gets blamed for a lot of this. I was told 7 years ago my one knee needed immediate replacement but 7 years later it's still fully intact. I am able to differentiate between the bone pain and the tightening, spastic muscle pain that is so hard to live with.
You guys are great and I appreciate your time, experience and knowledge!

Just back from the primary-she says my neck is a mess and ordered an MRI of the rest of my back. She says "neuropathy" which to me is a much of a non-diagnosis as fibro and prescribed Neurontin. Can anyone tell me anything about this med? She also is testing me for Sjogren's Syndrome because my mouth and eyes get very dry. She says my extreme lethargy is from chronic pain. I feel like I am a chemical guinea pig and wish I had a real diagnosis. She says my next stop will be a neuro-skeletal specialist.
I guess maybe I don't have MS or if I do I'll never know. Maybe I am just crazy-lol.

It's OK Ami, most of our Neuros think that all of us MS women are
hypochondriacs and a little crazy.:rolleyes::mad:

My neuro on the other hand, tends to look at me with a puzzled expression when I walk in there because my test results apparently paint a picture of one who is far worse off.
Just goes to show how one feels and is, does not always agree with what the test show.

Make sure your doctors know what your symptoms are despite what the test reveal. I think that doctors sometimes only see their patients as a collection of data and don't take the time, or make the effort to really listen, so that they get to know us; or how symptoms impact our lives.

It will help your doctors to help you if you not only describe your symptoms in detail to them, but to also let them know how those symptoms impact your life.

Wishing you well.

With love, Erika

I've never had a neuro who wanted to know what I thought of them, have you? :paperbag:

Vicky

My neuro takes my symptoms into account as a barometer much more than what the MRIs show. Lucky I guess...

My last Neuro was a young and flippant little guy. Not to my liking,
as a Doc, but a fun guy as a person.:rolleyes:. His idea was always, "we
handle what comes to us, no sympathy here".:rolleyes:

I feel like every doctor I go to take the first thing they hear or find and say "that's it!" and brush off anything thereafter. I have been told I hurt due to low potassium, neuropathy, high sugar (125), I have had a virus or flu a million times, arthritis, stress, menopause that happened 7 years ago, bad posture, wrong shoes, low vitaminD, high white blood cells, too much or not enough walking. Try this med or that med-all they do is make me more tired and useless.

With many people at this point, I might say that it could be good to take a time out from the search for 6 months or so and then come at it again. That is not a good tactic here because of you reduced mobility and pain.:(

I would correct those things that can be corrected- the Vit. D, for instance, the low potassium (Low potassium and elevated sugar can be SE's of prednisone).

You know that you are not useless- you are not well at the moment.
ANN

Thanks Ann. All of those blood things have been corrected or didn't even show up on subsequent tests. But when one did the doctor at the time was "sure" that was the problem. It's all so frustrating. I have tested for Lyme like 8 or 9 times! It's one of the reasons I didn't want mt bones looked at first because I know there is slight arthritis and I knew that would be the thing they'd grab and say is my pain. As far as I know arthritic pain ois more a constant ache in a joint not these always moving, never ending spasms that I have. The MRI that showed all that damage in my neck caught me totally off guard. It's still hard to believe because from the waist up my only complaint is minor weakness. Yet the doctor says that alone makes me permanently‎ disabled?
I haven't accepted any diagnosis yet‎ so this is turning into a long, expensive, painful journey.

Well I've given it a full week and at first the nuerontin seemed to offer some hope but as the week has gone on it's clear this one isn't going to work either. Oh how I want some prednisone!

Ami-

A week is probably not long enough to evaluate a new drug.

ANN