strange symptoms....need input

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luvmybabies
Regular Member


Date Joined Oct 2006
Total Posts : 107
   Posted 2/13/2008 10:11 AM (GMT -7)   
Hi everyone, I am visiting from the fibro board and have some strange symptoms that are not explained by fibro if my research is correct. Another member who frequents the fibro board suggested I post this in here. I was wondering if any of these sound familiar to any of you. Please excuse my copy/paste action here I am way too tired to retype all this so I copied my post from the fibro board.

Strange symptoms:

Hair falling out (in clumps): This is so annoying, my hair is brittle and it snaps really easily.

Strange rashes on hands and feet: I get this spotty red/purple rash on my hands and feet for seemingly no reason. It is not the soap I use because I switched to hypoallergenic everything.

Raw finger tips: the skin on my finger tips just peels off and is constantly cracking. Nothing I do helps.

Fingers/toes turn purple: I used to think this was just them being cold but it seems to happen randomly.

Neck is bright red: This looks like a sunburn but I don't go out in the sun much because it makes me feel like I have the flu so I know that's not what it is. It does not go away and its kind of ugly but not bothersome.

Swelling of joints: this happens particularly in the knuckles of my fingers and toes.

Strange sores in mouth; these hurt and come on for no reason. They are a bit more severe then canker sores and last weeks.

Crazy periods: I am getting my period randomly and sometimes 3 times a month

I also have problems digesting food. It seems to just sit in my stomach and I get cramps after eating. Its bad enough that I have gotten to the point where I eat very little.

I have a lot more going on too but since they seem to be fibro symptoms I have not listed them. There is one more I wanted to ask about. Do you guys lose feeling in your legs? Mine will turn to jello and at times I have to use a walker to get around so I can drag them behind me.

Every blood test I have had has been normal with the exception of one where I had a slightly elevated ANA. According to my doctor, this is ruling out Lupus and RA so I am at a loss at this point. I am taking this list to my rhumy on Thursday and am not sure how to explain all of this to her or what tests to ask for. She is a really open minded doctor and has been good at doing everything in her power to help me. I currently have a fibro dx and am currently taking Lyrica 75mg 3 times daily and tramadol as needed for pain. I am not sure where to go from here. Can you have Lupus even with normal blood tests?


Thanks for taking the time to read my post, any input is appreciated,
Stephanie

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/13/2008 10:24 AM (GMT -7)   
Hi Stephanie,
 
Welcome!  I wish you weren't dealing with all this, plus your fibro. I know what that's like.  I have lupus and fibro.  I visit you guys often in fibro-land!
 
Well, for your doctor to discount lupus and RA is stupid.  You have an elevated ANA. That's one of the first blood tests rheumies will look at.  If it's elevated, and you have symptoms of lupus (which you do, by the way), then the next step would be to do a full lupus blood panel of tests.  Yes, you can have normal test results, but most of us have at least one positive antibody test come back.  There are many antibody tests!  Your rheumy can explain all that to you. 
 
Everything you've mentioned can be symptoms of lupus for sure.  The purple toes and fingers could be Raynaud's Phenomenon.  I have that too.  It's very common in lupus.
 
I have that weird red sunburned look to my neck too! It's weird.
 
Hair loss, crazy periods, digestion issues, mouth sores, joint swelling, rashes - all symptoms of lupus. 
 
What is so nuts about fibro and lupus is that they mimick each other a lot.  Some of your fibro symptoms could be lupus, and vice/versa. 
 
Definitely get in to see your rheumy  as soon as you can.  If you can, take pictures of your rashes, mouth sores, anything visible. Keep a diary of all your symptoms, etc. Let us know how else we can help, okay,
 
Take care,
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/13/2008 12:18 PM (GMT -7)   
Hi Luv . . . welcome to the forum!

Ginny gave you some great advice!! There are some clickable links at the end of my signature you might find helpful. The one titled "lupus resources" is a topic from this forum which includes a post of suggestions from all the members here. There is another link to list the criteria for dx'ing lupus. You may find them helpful.

Keep us posted!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Harmony
Regular Member


Date Joined May 2003
Total Posts : 56
   Posted 2/13/2008 12:35 PM (GMT -7)   
Hi Stephanie:
Welcome to the forum. I agree with Ginny, it sounds like lupus to me too. Raynaud's explains the purple fingers and toes, and lupus could definitely explain the sore joints, rashes (the sides of my neck look sunburned too), mouth ulcers and hair loss. The raw fingertips are probably dyshidrotic eczema. Hopefully, the doctor can give you something to put on them. I've had good luck treating the mouth ulcers with Triamcinolone 0.1% paste (prescription only). I like Ginny's idea to make a diary and take photos. Check the links in AlwaysRosie's post, and let us know how you do at your doctor's appt.

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/13/2008 2:51 PM (GMT -7)   
Ok now im going to ask you all if im not understanding this. I have a dx of MS which gets questioned by local doctors. Rheumy said circulating immune complex..something stood up on kidney biopsy ,,,,and what my doc said was corenal membrane dystrophy of my eyes (was genetic) the Rheumy says Can be...but...in your case you symptoms have the neuro's fooled and i know what you have. I am the man to solve this mystery. Get off the neruontin as it will worsen your condition, but then he downplayed my pain at the same time and gave me a followup of 6 weeks. I cant handle the pain without the neurontin. I took HIS lab slip of all things he was checking for

cic
Complements 3, 4 (if youve been tested for these pls let me know..maybe u all know them or what they mean.
ana
anca
c reactive protein.


Then guess what? They all came back normal. No elevated Ana, Anca: NORMAL.
Creactive: NORMAL
Cic: normal
complements 3 and 4 in normal range.


so............
when i looked at the link above to see the criteria , i can Fit into lupus in a mild sense but the first time i read it i didnt see but one...i dismissed a few..so id like to ask your opinions if these are significant symptoms or not...

1.blood/protein in urine always.....protien +350 and higher at times...was told iga neprhopathy, then alports then kidney biopsy says "immune mediated lesion resolving itself"
******Rhemy pulled the report, differential diagnosis were SLE, Connective tissue, Thin Membrane disease...
(however when bluntly asked if i had sle he said no..he also said no to the others)

2. blister in top of my mouth where gums meet lips..painless but only once..was rather large

3. during past 1 /2 yrs 3 rashes on face that were not butterfly...but like a mild tiny bumpy thing on face and ears only. No fevers EVER with any of this.

4. I have to take b12 for anemia

5. hairloss ? strands, never clumps

6. Pericarditis? who knows ? Got thrown into hospital overnight for suspected cardiac prob with abnormal ekg but normal echo, later told chostachonditis and gerd...released? (why would ekg be ab but not echo)

7.joints-this same rheumy ..i went to to tell him of swollen right knee that made me fall..he swore both knees were equally as bad and would do exray to prove to me so....he did them but on next visit no damage showed up.

8. I guess what im saying here is i can "see" how i fit into it to a degree but i dont think a 1 time blister in mouth and 2 rashes on face would qualify?

Oh and i did have (during flares) cyst which was a mole imflame and grow x 3 days, removed: squamous.

Next flare i developed lil bumps (benign cysts) under eyes. Optho said MS probably nerve endings not sloughing off the cells fast enough.

((please keep in mind ive mentioned these skin things to each neuro and have been at two major hospitals..the one before this checked for lupus thru the lupus panel....about 2yrs ago)))


So i can relate to some of the things but i DO not see what i suffer from neurologically posted here. As far as pins and needles/legs weakness/ankles turning and spasticity with ON ....i do have ON in the left eye.


Makes a person wonder how it can be so close but yet I went to a Neurological Institue and made sure i Again asked about lupus..exam with puzzles to do, physical exam, eye exam..and the result was MS.


****side note..no lesions. They say that doesnt matter and that my symptoms presented before the scarring


Any thoughts on this would be appreciated. So frustrating and so painful.


thanks

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 2/13/2008 9:55 PM (GMT -7)   
All of your symptoms point to lupus or possibly a connective tissue disease which could include lupus.
 
The purple fingers and toes are caused by raynauds...common secondary condition with lupus and other ai diseases.
 
The swelliing is consistent with lupus.
 
The digestive problems are common with lupus and scleroderma.
 
Lupus, dermatomyositis can cause skin problems.
 
Yes, you can have lupus and have negative test results.  The is why is can be such a difficult disease to diagnose.
 
Get a second opinion but make sure the rheumy is really experienced treating lupus and other connective tissue diseases.
 
Bill
 
 
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/14/2008 7:21 AM (GMT -7)   
Kiera . . . most people won't see your post here . . . they are responding to Luv's question at the top.

If you copy and paste your post into a new topic with an appropriate subject, more people will see it.

I'm sorry you are so frustrated with the difficulty of diagnosing your symptoms. It IS frustrating and it IS difficult for the docs to put together all the pieces.

Did you check out the "Lupus Resources" topic? There is a link in my signature. That string includes a post which contains suggestions to new members from all the members here. There is LOTS of stuff there that may be helpful. Also make sure that you are making a good symptom list to take with you to the doctor. There is a post in that same topic to show you how to do that.

It looks like MS is the one they are treating you for now. . . I hope you are getting some help in the MS forum here as well.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 2/14/2008 9:26 AM (GMT -7)   
When you wrote about the fingers and the color and peeling away.. There is a lady at my church and she has had this and she was diagnosed with Scleraderma...

luvmybabies
Regular Member


Date Joined Oct 2006
Total Posts : 107
   Posted 2/14/2008 2:12 PM (GMT -7)   
Went to my rheumy again today. She says she really doesn't not think it is Lupus because I a missing a few of the "key" symptoms. She did send me to the neurologist though because she suspects MS. So I guess I am again in "looking for a dx" mode. Thanks everyone for your help.

-Stephanie

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/14/2008 2:27 PM (GMT -7)   
Sorry Stephanie . . . that you are still searching. I sure hope it isn't MS, but I'm glad she is taking your symptoms seriously and getting everything checked out.

I hope you'll keep us posted as you get more info or if you have questions.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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