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Old 02-12-2009, 07:36 PM   #1
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PetiteTattoo HB User
Question MS or Lupus or ?

Hi all. I've been "loitering" for some time now on this and the MS board. Thought it was time to say hello & just "unload" in a safe place - even though I'm not sure where I should be posting or if I should, since I have no definitive diagnosis. I've posted this on both, just in case someone has some insight for me

I'm 41 and I've been experiencing odd symptoms most of my adult life. In November, it all came to a head - my vision in both eyes was disrupted 90% or better by crazy flashing followed by mental confusion. Since then I've started cataloging past and present symptoms. I've had other visual disturbances, speaking and writing gibberish, "icy" spots in my head, vertigo, dizziness, tingling & numbness in extremities, restless leg syndrome (noticeable onset teen years), lost the use of my right hand (numbness, tingling and muscles wouldn't work) for a few months, "floating" feeling and a sense of being "brain dead", an intermittent feeling of inability to take a full breath - as if ribs are in the way, crazy itching lower legs and inner thighs - no rash or other obvious cause, overactive bladder & leaking urine, short term memory problems, fatigue, heat sensitivity and cold intolerance, trigeminal neuralgia, constant muscle aches - and for the past two years I've had repeated mammograms trying to find the reason for excruciating pain involving my armpit and someplace I can't pinpoint under my rib cage - to no avail. I have arthritis in my neck and back. Lately, I'm just plagued with a feeling like the flu (arm muscles just ache and ache) and at times my entire left side hurts to touch. My ribs feel like I was in a fight & lost, badly. I am exhausted and could easily sleep for 24 hours at a time - I've come close to doing so once in each of these past three weeks. It's unfortunate, but now I'm about to schedule surgery for a Total Laparoscopic Hysterectomy and bilateral salpingo-oophorectomy due to possible Stein-Leventhal syndrome and repeated hemorrhage. I say possible Stein-Leventhal because I have all the symptoms of PCOS - except the hormone markers. Thanks to what I've read here, I knew enough to let the surgeon know that I may have Lupus - hopefully, we can avoid any nasty complications.

I started reading these boards when an MRI from November showed T2 signal hyperintensities, one right frontal subcortical white matter and the second left frontal white matter periventricular. I've since had an ANA of 100 and my B12 is 234, which from what they tell me is borderline low. I'm now taking 1000mg B12 every day & baby aspirin (to prevent stroke). I see the neuro again in April. It's due to these boards that I've become educated enough to know that I can ask for, and receive scans & lab reports & know what types of questions to pose to the docs. I'm still feeling like I don't know much, but it's improving

For the longest time, I too was thought to be experiencing "depression" etc... I got so sick of hearing that. I am not depressed. I am frustrated and tired of being tired. I have a bubbly personality and am quick to laugh - it's just getting harder to sustain that side of me when I feel like I'm always ill.

From reading here, it's obvious I'm probably quite a way from diagnosis. While I accept that, I selfishly am grateful knowing that I am not alone or absolutely bonkers Just one final thought before I retire for the night -- thank you to all who have posted before me. You've given me much to think about, to look into, and to know that no matter what's coming for me I'll be OK. God Bless...

 
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Old 02-14-2009, 08:18 AM   #2
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sophie56 HB User
Re: MS or Lupus or ?

Petite Tattoo, I know the frustration you must be going through and am sorry for it. Unfortunately I cannot give you any consolation other than to let you know you will be in my prayers. I have just recently been diagnosed with Lupus and it has been rough..
When is your surgery?

 
Old 02-14-2009, 06:54 PM   #3
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PetiteTattoo HB User
Re: MS or Lupus or ?

Quote:
Originally Posted by sophie56 View Post
Petite Tattoo, I know the frustration you must be going through and am sorry for it. Unfortunately I cannot give you any consolation other than to let you know you will be in my prayers. I have just recently been diagnosed with Lupus and it has been rough..
When is your surgery?
Thank you for the prayers. I am so sorry to hear about your recent diagnosis. I personally keep thinking that if I "know" then I'll feel better... I hope that holds true for you. I saw the surgeon on Thursday. He said we'd schedule the surgery in a few days, so I would imagine I'll talk to him again next week. My anniversary date at work (I'll have been there 11 years as of March 12) is coming up, so I'm going to try & time the surgery around that date. This way I can take PTO for the better part of the time I'll need to be out. Sounds silly, doesn't it, being so practical?

 
Old 02-16-2009, 06:27 AM   #4
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Re: MS or Lupus or ?

Petite Tatoo, Have you seen a rheumatologist? Given your high ANA & low B12, that couldn't hurt! (You've no doubt read that ANA is elevated in a number of conditions, but since many are in the field of rheumatology, well, it would be a good move, I think.)

Have you read the "sticky posts" at the top of the thread list, on APS (antiphospholipid syndrome), as well as on SLE?

Have you gone to the library or bookstore & looked for books on lupus? Dr. Daniel Wallace is a great choice---also, Dr. Robert Lahita.

Are you definitely scheduling your ovarian surgery? I have no clue what "Stein-Leventhal syndrome" is... But your comment that you had all the symptoms but WITHOUT confirming test results really caught my eye. I had episodic periodic problems for decades, from the very start: crazy-heavy bleeding, bleeding lasting 2-3 months at a time, etc. Then I found out, while in perimenopause (!!!), that menstrual irregularities are VERY common in lupus. (Wasn't I annoyed, after all those years...)

Headaches are seen in both APS & in lupus, I think (in many other things, too, alas...). I had some doozies myself, real show-stoppers. My bad luck was getting my most definitive manifestation LAST: rashes that were lupus-specific. I should have been Dx'ed in a flash, but my suburban doctors mostly know not what they were doing... Are you in a part of the state close to "big medicine"? If so, that's where I'd turn, if I were you.

Drop us updates when you can, OK? Best wishes, Vee

 
Old 02-16-2009, 08:27 PM   #5
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watoozie HB User
Re: MS or Lupus or ?

What is normal for B12? Mine was 140 or 160, can't remember, but I received daily shots and then weekly and now monthly. Doc said the shots work faster and was better for me than anything over the counter.

 
Old 02-17-2009, 06:34 PM   #6
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PetiteTattoo HB User
Re: MS or Lupus or ?

Quote:
Originally Posted by watoozie View Post
What is normal for B12? Mine was 140 or 160, can't remember, but I received daily shots and then weekly and now monthly. Doc said the shots work faster and was better for me than anything over the counter.
I've been doing quite a bit of research/digging into B12 levels...and I have found conflicting information regarding a satisfactory B12 level. The most recent info I found (from another patient) was that "Normal is consider 243 and borderline low at 175-242". From MedlinePlus, "Values of less than 200 pg/mL show a lack (deficiency) of vitamin B12. People with this deficiency are likely to have or develop symptoms. Older adults with vitamin B12 levels between 200 and 500 pg/mL may also have symptoms." From (another website, not sure if I should post it), "160–950 picograms per milliliter (pg/mL) 118–701 picomoles per liter (pmol/L) (SI units)" From Wikipedia, "Recent research indicates that B12 deficiency is far more widespread than formerly believed. A large study in the US found that 39 percent had low values. This study at Tufts University used the B12 concentration 258 pmol/l (= 350 pg/liter) as a criterion of "low level". However, recent research has found that B12 deficiency may occur at a much higher B12 concentration (500-600 pg/l). On this basis Mitsuyama and Kogoh proposed 550 pg/l, and Tiggelen et al proposed 600 pg/l." See what I mean about conflicting info?

According to the Mayo Clinic, "The human body stores several years' worth of vitamin B12, so nutritional deficiency of this vitamin is extremely rare." Basically, by the time your B12 deficiency shows up, it's been "there" for a while, wreaking havoc on your body.

I'm not a doctor, just a patient - so remember that any information I put here is NOT meant to diagnose yourself. Obviously (it seems), your doctor felt that your particular levels were low enough to warrant being treated (as does mine). If the shots work for you, my goodness, keep doing what you're doing! Since I just started with my B12, I won't know if it's working or not for quite some time...

Last edited by PetiteTattoo; 02-17-2009 at 06:39 PM.

 
Old 02-17-2009, 07:11 PM   #7
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Re: MS or Lupus or ?

Quote:
Originally Posted by VeeJ View Post
Petite Tatoo, Have you seen a rheumatologist? Given your high ANA & low B12, that couldn't hurt! (You've no doubt read that ANA is elevated in a number of conditions, but since many are in the field of rheumatology, well, it would be a good move, I think.)

Have you read the "sticky posts" at the top of the thread list, on APS (antiphospholipid syndrome), as well as on SLE?

Have you gone to the library or bookstore & looked for books on lupus? Dr. Daniel Wallace is a great choice---also, Dr. Robert Lahita.

Are you definitely scheduling your ovarian surgery? I have no clue what "Stein-Leventhal syndrome" is... But your comment that you had all the symptoms but WITHOUT confirming test results really caught my eye. I had episodic periodic problems for decades, from the very start: crazy-heavy bleeding, bleeding lasting 2-3 months at a time, etc. Then I found out, while in perimenopause (!!!), that menstrual irregularities are VERY common in lupus. (Wasn't I annoyed, after all those years...)

Headaches are seen in both APS & in lupus, I think (in many other things, too, alas...). I had some doozies myself, real show-stoppers. My bad luck was getting my most definitive manifestation LAST: rashes that were lupus-specific. I should have been Dx'ed in a flash, but my suburban doctors mostly know not what they were doing... Are you in a part of the state close to "big medicine"? If so, that's where I'd turn, if I were you.

Drop us updates when you can, OK? Best wishes, Vee
Hi, Vee No, I haven't seen the rheumatologist yet... that's next. I did read the sticky on APS - I believe both my ACAB and LAC were negative. I plan on getting both of the books you mentioned... even if I get a final "negative" on SLE (although unlikely at this point?), I'll get an education

Stein-Leventhal is a subgroup of PCOS (Polycystic Ovarian Syndrome - or disease, depending on what you're reading). With Stein-Leventhal, the hormone levels (extremely high) aren't there, and most times neither is being "curvacious" I've said lately that my "acne" and "rosacea", as well as the constant female problems were NOT what they seemed. I find it odd that no one, and I mean even a top dermatologist, did NOT see this... but it is what it is I guess. But, I guess this is what happens when I see this person for this and this person for this and no one is talking to each other.

I'm 30 min. or so from a city of over 93,000 (and it's the State capital) - so we are practically inundated with phenomenal doctors! That being said, it's only been in recent years (it seems) that these doctors began "grouping" and really talking to each other in a "team" fashion about their patients. I've seen a drastic "coming together" of the many professions of late. VERY heartening. I'd rather be treated as a body system than just based on individual parts -- that's what has kept me in the mess I'm in lol...

As for the surgery, oh yeah. All - and I do mean all - of my reproductive organs are to be removed. I've had sooo many problems, and now it's just "time". The final straw was the hemorrhaging twice (once at work - can you say mortified). Add in the pain, the pain and the pain... well, I'm relieved (and scared, but mostly relieved).

I'll update as I get news... I appreciate all of your thoughts and suggestions. I look forward to speaking with you again.

Peace & Bliss...

Last edited by PetiteTattoo; 02-17-2009 at 07:12 PM.

 
Old 02-18-2009, 03:36 AM   #8
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Re: MS or Lupus or ?

Petite Tatoo, I hope you get a good (effective) start with the rheumie. I'm now picturing where you live.

One of my cousins had a terrible time with ovarian cysts---looked like a wild level of pain. I really hope your doctors can reach a consensus Dx on that, too, either as part of a single Dx or as a separate Dx. And not a moment too soon, huh?! Drop us updates when you can, OK? Thinking of you, Vee

 
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