Confused, lupus? Ms? Help!

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Confused, lupus? Ms? Help!

Postby Deemarie1223 » Mon Aug 27, 2012 8:07 am

My name is darla and I'm 32yrs old. Im not even sure I should be here, so I guess that's why I'm here! For many yrs its been thought that I have lupus or another connective tissue disorder, although not dx'd with any one thing, but about 20 things. So to make things short, I have been adamant tha there's something wrong and pushing for answers. This whole time I've thought it was along the lupus line, until 3 days ago.

I recently joined a lupus forum, and when giving my symptoms, someone asked "have you ever been checked for ms?", I said "no, why? Do these sound like ms symptoms?" before I got a reply, I immediately looked up ms and the symptoms and I was shocked to see that yes, I have many of them! I was most recently dx'd with peripheral neuropathy and put on nuerontin. My pcp said she was going to send me to a rheumy. I left her office, excited tha maybe the end was near.....well the rheumy called to schedule and the next day I got a call from a neuro saying they were following up on a refferal, so I scheduled with them as well (both are at Dartmouth Hitchcock medical center and apts are piggybacked) but I didn't know why I was seeing a neuro, I chalked it up to the recent neuropathy. Then, I saw the symptoms. I've come to realize that yes,maybe I am going for the neuropathy but I think it's more then that.

I know bot ms and lupus are great mimicars of each other and other illnesses, I've also learned you can have both together. I do have any ms symptoms but a biggie is I've had 8 pregnancy losses due to antiphospholipid syndrome, which is most commonly found in lupus. Thad the only symptom I can differentiate. Other then that, a lot of my symptoms, you *can have w/lupus but are ON the list.

So here I sit, in pain, depressed and utterly confused! So I decided to come here to get some input. I'm seeing my pco today for the neuropathy follow up, she's not aggressive at all and I want(NEEED) her to be. I'm not sure if I should bring in a symptom list (she already knows most) and just say how I feel or wait for my apts at Dartmouth, though I am going to ask about the neuro refferal!

My symptoms are as followed (in no order)
Neuropathy
Depression
Anxiety
"brain fog"-forgetfulness, can't find the right words and often say things like " you know that thing that's white, and you put food into to heat up" ohhh yeah microwave etc etc
Extreme fatigue
Joint and muscle pain/swelling
Occasional nighttime incontinence
"eye floaters"
livido reticular is rash
Headaches
Chronic constipation
Muscle twiches (calfs, eyelids, but ect)
Alopecia
And a few other minor things that my brain won't giv me at the moment

So as you can see, there's quite an array! I'm hoping someone will pipe in with their 2cents as it's worth a million bucks to me! I've educated myself about lupus a Loy, but no nothing of ms, and I'm very scared!

I ow your not docs, but in your opinion, do I have enough symptoms that ms is a possibility? Or do you think, no way...this girls crazy, it's either lupus or "over reacting!"? Also, how should (if) I approach my pcp today?

Sorry so long, thanks for reading and have a great day!

Darla ~forever awaiting answers~
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Re: Confused, lupus? Ms? Help!

Postby Deemarie1223 » Mon Aug 27, 2012 8:25 am

Oh I've remembered some, very sensitive to heat! I can not stand being outside in the heat, get nauseous right away, and tired! Also don't like bright lights (sun, computer screen sometimes) hurts my eyes!

Lack of coordination, always tipping, or mis stepping, stubbing toes etc....
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Re: Confused, lupus? Ms? Help!

Postby jimmylegs » Mon Aug 27, 2012 8:36 am

hi darla, sorry to hear you've been having a rough time. welcome to the forum and let me just say that this one is just *screaming* zinc at me. and magnesium too. but the 8 lost babies made me sit up straight.

fyi:

The role of zinc in thrombosis and pulmonary embolism in the course of antiphospholipid syndrome (APS)--short review
http://www.ncbi.nlm.nih.gov/pubmed/18172583

Optic Neuropathy in Primary Antiphospholipid Syndrome in Childhood
http://jcn.sagepub.com/content/16/9/690.short
...This case suggests a role for antiphospholipid antibodies in the pathogenesis of optic neuropathy...

Zinc and the Eye
http://www.jacn.org/content/20/2/106.full

i`ll go thru your list of symptoms and link up to suspect nutrients line by line if you like :) plus i`ll go find where i recently did that for someone else, and link to that as well.

hope we can find you some useful info!
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Re: Confused, lupus? Ms? Help!

Postby lyndacarol » Wed Aug 29, 2012 2:20 pm

Welcome to ThisIsMS, Darla. If you have felt that lupus was not the right answer to your symptoms, you are right to keep pushing for answers. As you asked, I offer you my two cents' worth:

As you know, lupus and MS are in the group of more than 80 "autoimmune diseases" according to the American Autoimmune Related Diseases Association (http://www.AARDA.org); and it is not uncommon for a person with one autoimmune disease to develop a second or even a third.

I think you have a good idea about composing a symptom list, discussing it with your PCP, and pushing her to find the answers. Please realize that if MS is the answer, there is no known cause and no effective treatment or medication for the disease at this time. But perhaps having a diagnosis that finally "fits" would help your state of mind. You are right: in general, we are not doctors; in my opinion, MS is a possibility. You are not crazy or overreacting. We all can understand your frustration, many of us have been through a similar process. Many women here (though not I, myself) have even suffered many miscarriages.

All the best to you.
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Re: Confused, lupus? Ms? Help!

Postby jimmylegs » Thu Aug 30, 2012 4:38 pm

hi again!

re neuropathy (can you describe further, as specifically as possible?):

here's a great resource that looks (in specific and technical detail) at some neuropathies associated with nutritional deficiencies:
http://neuromuscular.wustl.edu/nother/vitamin.htm
for several of the vitamins and minerals listed, there happens to be research investigating their status in ms patients. so with a few blood tests you can find out if you match the nutritional profile of an ms patient, or the profile of a healthy person.
(there's also chromium deficiency neuropathy which is not listed at first glance, but research is out there on that one too. and likely others. but it's a good starting point)

depression - some links to b complex vitamins (depression is mentioned in the syndromes site above, under vit b6), magnesium, and vitamin d3:

Folic acid deficiency and depression
http://www.sciencedirect.com/science/ar ... 8280735867

Depression and magnesium deficiency.
http://www.ncbi.nlm.nih.gov/pubmed/2722406
The psychiatric symptoms of magnesium deficiency are unspecific, ranging from apathy to psychosis, and may be attributed to other disease processes associated with poor intake, defect absorption, or excretion of magnesium. Serum magnesium should be determined when there are symptoms consistent with magnesium deficiency and/or in conditions which can lead to a deficiency, e.g., malabsorption, malnutrition, alcoholism and diuretic treatment. A low serum value suggests magnesium deficiency, but the diagnosis is reinforced with analyses of magnesium in the urine and a loading test with magnesium. Magnesium can be given orally or intramuscular/intravenously.


Vitamin D deficiency may play a role in depression
http://www.medical-hypotheses.com/article/S0306-9877(07)00240-X/abstract
Vitamin D is known to be widely deficient in Western populations. The implications of this in terms of bone health are increasingly understood, yet its impact on other health areas, particularly mental health, is unclear. Recent data suggests that hypovitaminosis D may be common, especially in the elderly. Other studies have suggested that low levels of vitamin D are associated with poor mood. There are a number of trials that have suggested a role for Vitamin D in the supplementary treatment of depression. Dose may be a critical issue, as sun exposure and dietary intake may be low and high doses may be required.


i'd try magnesium for anxiety too, it's pretty awesome :)

A Synergistic Effect of a Daily Supplement for 1 Month of 200 mg Magnesium plus 50 mg Vitamin B6 for the Relief of Anxiety-Related Premenstrual Symptoms: A Randomized, Double-Blind, Crossover Study
http://online.liebertpub.com/doi/abs/10 ... 0900318623

magnesium's also good for fatigue, muscle pain and twitches, headaches, constipation (if you use the right form eg oxide - for the other problems you use a different form)...

i used to have eye floaters and don't have them any longer, but i have no idea which nutrient or combination of nutrients helped!

my best recovery from serious brain fog was repletion with adequate zinc. i think it's likely to help with the alopecia as well. i suggested to one of my co-workers that zinc would help her conceive, and at the time i didn't realize she had shaved her head due to alopecia. i told her to take zinc (and magnesium just to help with any possible cramps etc in the meantime) and she was pregnant in no time. has a full head of hair again too :)

i looked up livedo reticular in combination with deficiency, and the results go straight to APS and a deficiency of protein C:

Acquired protein C deficiency in a patient with primary antiphospholipid syndrome. Relationship to reactivity of anticardiolipin antibody with thrombomodulin
http://ukpmc.ac.uk/abstract/MED/2542543
A 16-year-old boy had recurrent venous thromboses and pulmonary thromboembolism that caused him pulmonary hypertension. He also had livedo reticularis, thrombocytopenia and high titer IgG antiphospholipid (cardiolipin) antibodies. In the absence of clinical and laboratory evidence of SLE, he was considered to have a primary antiphospholipid syndrome. Coagulation studies revealed a functional deficiency of protein C although it was present in normal antigenic amounts. Since both his parents had normal functional and antigenic protein C findings, his deficiency was considered acquired...


i don't have time to dig too deep today, but i'm hypothesizing there's a zinc-dependent pathway somewhere in the mix, for regulating protein C.

that's all for now! will find that link i mentioned above too.
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