Please help with symptoms

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tulips
Regular Member


Date Joined Nov 2007
Total Posts : 105
   Posted 9/9/2010 8:12 AM (GMT -7)   
Hi

I have no diagnosis yet and been around different forums for answers.

I have vitamin d deficiancy
And elevated sed rate
On occasion mild ck elevated
I have had muscle biopsy, emg, ncv, MRI
Spep, stiff person test al lot of neuro blood work done
All is normal. Except sed and d is abnormal

I have been suffering for 12 yrs.
So I want to ask do you guys get muscle cramp and twitcing along with this. I think I might have couple overlapping things.

I have this all over my body
Stiffness. If I am in one position I get stiff. If I lay with my back arched I cant unarch without pain.
When I walk and go up and down stairs there is pain in all joints. My shoulder joints hurts.
Do you guys get tired quick stirring food. Bending down.

What's happening is I can induce this pain by moving.
If I bend my neck down or sit and bend at hips it will start the pain from joints all way down my legs and arm.
Every thing pops and cracks even my neck and throat when I swallow.

I have lots of cramps and twitching which neurology can't answer. I think inflammation might be activating my nerves.

I do have moderate disc dryness and bulge in three spots.
I have stabbing pain and shooting pain all over. Feels like my bones and muscle Gona break and tear!


Any suggestion.

tulips
Regular Member


Date Joined Nov 2007
Total Posts : 105
   Posted 9/9/2010 8:50 AM (GMT -7)   
I wante add that does anyone have symptoms in their face and throat. For exame I have it bad in my jaw. Like tmj. But I have facial muscle stiffness and in thraot like they stay in constant state of tight and became stiff to swallow and the bones in the from click and make click sound as if rubbbing against each other to swallow.

That's what so confusing as to what I have as it is all over

My fingers hurt if I write and pain goes all way to elbow.

1flwrchild
Regular Member


Date Joined Sep 2010
Total Posts : 75
   Posted 9/9/2010 12:10 PM (GMT -7)   
Hi tulips,
I'm just recently (feb) diagnosed with Ra so I'm no pro at this but, Yah, sounds like alot of the symptoms I have.  Vit. D deficiency, elv sed rate & so on.
I also have swelling in wrists.  That was the first sign for me. I went to a rheumatologist and my bloodwork came back with a diagnosis of RA & also was told I have Fibromyalgia. Have you seen a rheumatologist or just a GP?  I've heard that there can be false positives/negatives with RA in the bloodwork.  I really hope you get an answer soon. I look back now at the way I was feeling years ago and realize I probably had these diseases way before they were even diagnosed. 
Good luck & take care,
Deb :-)

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 9/9/2010 1:06 PM (GMT -7)   
I take it you have seen a neurologist because of some of the tests you have had. Have you seen a rheumatolgist? If so what is he/she saying? If not, get yourself to a rheumatologist ASAP.

Have you had a MRI of your sacroiliac joints?

Vitamin D deficiency can cause muscle problems. Have they got your levels back to normal yet?
Moderator Crohn's disease and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/9/2010 3:25 PM (GMT -7)   
Autoimmune diseasex have such similar symptoms, that without properly examining the presenting patient it would be nigh on impossible to make an accurate diagnosis, you really need to see a Rheumatologist.

Have you had a calcium level test? If not, it is very important that you arrange one, elevated calcium bears a strong relationship with Vitamin D deficiencies and causes muscular and bone pain, along with a high level of fatigue.

Other possibilities are an inflammatory arthritis (i.e. RA) or perhaps even Fibromyalgia - especially the jaw and muscular pain, given these are not usually seen in arthritis! The twitching (spasms) also smacks of fibro.

If you're taking any medications, some symptoms could be an unexpected side effect. Tramadol can cause twitches and fatigue, for example.

Post Edited (JayBespoke) : 9/9/2010 4:29:53 PM (GMT-6)


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 9/9/2010 5:52 PM (GMT -7)   
Hi Tulip, I agree you need to see a rheumatologist. I get jaw pain, James, you can get RA in your jaw, I had to give up eating muesli, just couldn't chew without agony...but Tulip a lot of your symptoms sound like ours. I also have low vit D and get muscle spasms from low magnesium levels. I'm on supplements now and much better with the cramps.
Go get a referral it can't hurt to see one more specialist. best wishes, golitho

Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 952
   Posted 9/9/2010 5:57 PM (GMT -7)   
Tulips,
The worst part of these diseases is the RA and Fibro seem to go hand in hand for many. With myself the feeling of
the bones wanting to shatter is RA, the facial pain is RA, muscle weakness is fibro, twitching is fibro. I've been affected
for nearly 50 years now and sometimes it will hit one joint then move to another. When my nephew was diagnosed
at 2 years old my sister was told that it travels in the body and hits different joints. He's now in his mid 30's.
A lot of my family members have been hit with this early in life, even my grandaughters at ages 5 and 9. It does not
discriminate and is extremely heriditary. Even my Dad was 7 when he first experienced symptons.

There are many herbs you can take for the different symptons that really do help if you wanted to go that route.
Just contact me for any help.

Nana Monster

tulips
Regular Member


Date Joined Nov 2007
Total Posts : 105
   Posted 9/10/2010 3:46 AM (GMT 0)   
Hi

Yes I have seen rhumatologist. Infact went for follow up today. My Ana is negative so she said she docent beilieve this is rhumy problem and to continue with neuro.
They haven't done rheumatoid factor. She said If Ana negative then no need and sed rite dosent mean much!! In 2005 a different rhumy did buck of work up for lupus Lyme and different stuf like histone, rnp, smp and bunch other stuff all normal.

Rhumy said if I had to diagnose without a positive test I say lupus but she docent want to diagnose that woyhout positive test. Even though twice in the past it was borderline and she said that can be with anyone !!!
Hello I am not any one I have actual symptoms!!! Ding dong!!!

Any ways do u guys have spasticity cause that's what it feels like. Continous tightness in muscles. Wierd thing is one movement triggers another spasm. Or pain

I have had check up for sarcoidosis done too all normal.
She wants me to see a kidney doc since I have had moderate blood for years in urine and wonder if there is a clue there.
What it feels like is shortening in muscles that's keeping me stiff. If any one here has had neck go complete stiff and u can't move it and if u try it literraly pulls u back like it's been nailed down and if u try to move there is tons of resistance and burn, well that's how it is all over body all the one non stop and that's what I mean movent triggers it.

If I bend my neck down it will radiate down arms. Its wierd.

Have any of u have contractors from ra or shorting of muscles so that's what the pain feels like. It's constant tug of war in muscles. If one xontracts the opposin relaxes but I think in spasticity both contract.

Geeeeez I don't know sorry to ramble
Thanks
Tulips

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/10/2010 2:52 AM (GMT -7)   
golitho said...
I get jaw pain, James, you can get RA in your jaw,


I know, my sister does also. My point was that more people who present with jaw pain are dx'd with fibromyalgia than with RA, and given the other symptoms both dxs need exploring. I have occasional jaw problems, but it "feels" more like Fibromyalgia than PsA. I'm not quite sure how, but i can distinguish, or at least appear to be able to distinguish symptoms from PsA to symptoms from Fibro. If I feel exhausted one day, I'll "know" which disease is causing that fatigue on the day, very strange feeling, but it's probably entirely psychosomatic.

As it happens, my ANA/SED/CRP/RF was all pretty much normal, with fairly severe arthritis, Tulip. Have you have calcium blood levels checked? You didn't mention it in your last post, and I assume you have - it would be irresponsible of a doctor not too, but I think it's important enough for me to ask again!

tulips
Regular Member


Date Joined Nov 2007
Total Posts : 105
   Posted 9/10/2010 4:41 AM (GMT -7)   
Ya they did it says 9.5 calcium

I don't have fatigue I just get sore from continous spasms

I have more neurology issues and now more rhumy type issues so might have overlaping things going on.

I

tulips
Regular Member


Date Joined Nov 2007
Total Posts : 105
   Posted 9/10/2010 6:20 AM (GMT -7)   
What test besides rf should I aak for. What r the names of anti bodies that go along with this.

I wanna ask do the sumtptoms get better if u guys rest cause mine dosent. It will throb even when resting. I don't know if my severe cramping is causing pain in joints or vice versa.

The pain can be induced with movement like holding phone to text it will radiate down from dingers to elbow and feels bone crushing pain. It's gnawing constant for several minors to longer. Just like that of I flex or stretch my leg or at h my back the pain will be so bad in hips and back down to whole legs.

And the thing is poping. Even when I squeeze my wriist and hand to relieve some pain it pops loud. Turning in bed will make almost all vertbrees pop and front chest ribs pop. When I walk my right ankle is constantly feels like joint is off like it wants to pop.

tulips
Regular Member


Date Joined Nov 2007
Total Posts : 105
   Posted 9/10/2010 6:31 AM (GMT -7)   
Sorry I keep writing I just think of how to explain.

There is pain in every movement. If I sleep with my elbow bend under my head then from el ow to fingers bone hurt like hell and throbs so I keep having to move.

I feel like I having muscle spasticity and shortening thats keeping me like this. My shoulder to whole muscle under in and front are sore can't move it much

I can move my hips an dindicw this pain.

tulips
Regular Member


Date Joined Nov 2007
Total Posts : 105
   Posted 9/10/2010 8:32 AM (GMT -7)   
See that's the problem I have the same poping and clicking in my throat to swallow and is stiff. I twitch in placed where u wouldn't think. There was a muscle!

The neuro is this is like hyperpexcitable nerves like neuromytonia but no confirm.

When I Am laying down I bend my arm arm put it on my head. It will induce pain all way till fingers like boner and muscle tearing tight and I wome it.

I keep changing sides and my hips hurt like hell to lay on it.
It's almost like there is something inside putting pressure on bone joints and muscles. And maybe that's what it is inflammation causing pressure even on nerves

tulips
Regular Member


Date Joined Nov 2007
Total Posts : 105
   Posted 9/10/2010 8:41 AM (GMT -7)   
Can any of u induce severe pain radiating from fingers to elbow if u purposely pop ur fingers ?
Thats how it feels by it self.

Sorry again for so many posts

tulips
Regular Member


Date Joined Nov 2007
Total Posts : 105
   Posted 9/10/2010 9:31 AM (GMT -7)   
Do u guys get joint pain on movement only or constant like in whole hip

TakeCare
New Member


Date Joined Aug 2010
Total Posts : 5
   Posted 9/10/2010 11:19 AM (GMT -7)   
I have also had the jaw problems with my RA. Just know that you are not alone and we will all get through this together.

Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 952
   Posted 9/11/2010 4:07 PM (GMT -7)   
The one issues sound like RA but the spasms sound more like fibro. Unfortuneately I have both
NM
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