SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Question for Nicocredita
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

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Question for Nicocredita

Hi Nico, you might be able to point me in the right direction. I have been reading today about people who get diagnosed with  seronegative Lupus. It made me wonder as I had the positive ANA, my dad had lupus, and i have symptoms, including the fever....etc.

Recently in November  that I had positive blood tests for:

Anti Smooth Muscle Autoantibody
anti-nuclear factor
antimitochondrial antibody
parietal cells
reticulin R1 Autoantibody

I spoke to the doctor about it and she just dismissed it and said the blood tests would point to autoimmune hepititis (hepatitis) but there was nothing wrong with my living so it was just left like that.

I wonder if because I am feeling poorly at the moment and in a lot of pain I should drag my sorry back side back to the GP and ask for more tests for Lupus etc, but i am not sure i have the heart to do so.

When i checked on the above they all pointed to LUPUS.

Have you any thoughts? Mariax
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8 Comments
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551343_tn?1350880995
Sorry i apologise i spelt your name wrong on the title. Silly me.
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551343_tn?1350880995
Goodness me why did i type the above I cant spell for toffee.

I typed:

would point to autoimmune hepititis (hepatitis) but there was nothing wrong with my living so it was just left like that.

It should have been:

would point to autoimmune hepititis (hepatitis) but there was nothing wrong with my LIVER so it was just left like that.

lol. I should have stayed in bed lol.
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1530171_tn?1362547225
Hey Maria,
Have a look again at the criteria below, take your time
to check against your test results and symptomology,
and I'll get back to you later. I want to let all your info to sit in my head for a while. Plus today is one of those days. You know.
Would it be easy for you to give some of the actual test results?
It might help. If not, that's fine.
No problem with the typos or mistakes.
As long as we all know who we are!!! lol! some people look at themselves
in the mirror and don't recognize who they are anymore-

Classification Criteria for the Diagnosis of Systemic Lupus Erythematosus (SLE)

    Malar rash: Fixed erythema, flat or raised, over the malar eminences
    Discoid rash: Erythematous circular raised patches with adherent keratotic scaling and follicular plugging; atrophic scarring may occur
    Photosensitivity: Exposure to ultraviolet light causes rash
    Oral ulcers: Includes oral and nasopharyngeal ulcers, observed by physician
    Arthritis: Nonerosive arthritis of two or more peripheral joints, with tenderness, swelling, or effusion
    Serositis: Pleuritis or pericarditis documented by ECG or rub or evidence of effusion
    Renal disorder: Proteinuria >0.5 g/d or 3+, or cellular casts
    Neurologic disorder: Seizures or psychosis without other causes
    Hematologic disorder: Hemolytic anemia or leukopenia (<4000/L) or lymphopenia (<1500/L) or thrombocytopenia (<100,000/L) in the absence of offending drugs
    Immunologic disorder: Anti-dsDNA, anti-Sm, and/or anti-phospholipid
    Antinuclear antibodies: An abnormal titer of ANA by immunofluorescence or an equivalent assay at any point in time in the absence of drugs known to induce ANAs

Any combination of 4 or more of 11 criteria, well-documented at any time during a patient's history, makes it likely that the patient has SLE (specificity and sensitivity are 95% and 75%, respectively).

Ciao!
Niko with a K -lol!  
And sorry that you're not feeling your greatest lately!
I'll send you some Healing Energy across the Ocean.
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551343_tn?1350880995
I am blushing and mortified that i made such a hash of my post yesterday. Fancy giving you a C.....when you are a K lol.....

Blush....sorry...contrite....will answer this later as i am poopy now just wrote a longish post...lol

Big hugs and thank you for taking the time i know its not a good time for you right now.xx Mariax
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1530171_tn?1362547225
Maria,  you should know me by now.
    No need to apologize.
    All good.
    Niko xx
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551343_tn?1350880995
Not ignored you on this, but just cant find all my paperwork all the copies from the neurolgoist and the GP over the years which i was going to go through with you.

I know i put it away safe but cant find it. I did find the results of my VEP though and my left eye was 116 and right 111 and i was told i had Optical neuropathy/neuritis as the range was high enough for that.

I also was diagnosed with a lymph thing many years ago but cant remember what it is called lol. I know that people with lupus get it. My lymph under my neck were swollen i look like a hamster full of food when I am flaring and dont feel well. I also run a small temperature. My normal range of temperature is low. About 36.4. When it is normal 37.1 it usually means i have a small temp.

I have had lots of sterile pyruiria (cause unknown although one plonker of a specialist felt it was a misuse of pain meds. I went nuts I rarely take any pain meds. Infact last night was the first time in a year I had to take paracetamol for toothache) on most of my water tests starting way back in 1980.

They found a large area of calcification in my rib area in the back.

Thats just some of the stuff i can remember lol.

Oh yes i have photosensitivity. If i sit in the sunshine for more then 20 minutes my legs look like corn beef lol. I actually took photos of it and send it to my neuro and he said oh dear.......thats photosensitivity dont sit in the sun lol.

I get ulcers and I have progressive/Pyorrhea. I was diagnosed with this when I was eighteen and I remember they used an old fashioned treatment for it which was copper sulphate in between each tooth. I was allergic to it and my mouth swelled up like a balloon. I ended up in hospital in Cyprus for 3 days trying to sort it all out. That is why i am now phobic still with the dentist.

Now my pyorrhea is aggressive since i have been sick I have lost about 5 teeth, and they are falling out at a fast rate. I only have a few left lol. The dentist have refused to take out my teeth as they are good but are quite happy for my teeth to become loose its a nightmare for me.

Something feels as though it is eating my gums away...I cant seem to slow it down now.

I have swelling around my ankles and my feet. I was told when i saw the rheumatologist i had water around my knee and she thought i had arthritis in my knee. I do get really bad pain in my knee sometimes it is agony to go upstairs.

my GP told me the weird swelling around my feet and ankles shows i have a connective tissue disorder.

I had Positive ANA for lupus. The second one was negative, so i was told i didnt have it.

I have to say my dad was diagnosed with lupus and he never had a positive ANA.....just diagnosed on his symptoms.

He had the same or similar problems as me, but he did get purpuria which turned out to be cryoglobenimia....

Anyway thats it for now that I can remember. With the other blood results above I googled them all and they would be what one would expect in lupus.
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1530171_tn?1362547225
Hey Maria.
You can write an entire book on this Maria.
I will be brief as I'm at work.
Connecting dots-lol!-is one of my strengths.
Some intellectually, some intuitively.
So, multi symtpomatic, low grade fever, many unverified suspicions,
inconsistent findings,false negatives and positives?
We talked about the value of dx many times in the past.
Could be a blessing or a nightmare or a bit of both; not  just the dx,
but the process itself.
Here's my thought. What if forget about the dx completelely
and treat the PERSON with no regard to the possible medical labels
(as the labels could be extremely limiting and dictating a very
defined medical according to the suggested protocol, according to the medical authorities and  acceptable prescribing standards).
So in your case, what do I see? A multi-systemic imbalance-NO DOUBT
about this. Cause,who knows? Likely a combination of causative factors.
Stress, hormonal changes, nutritional deficiencies, inflammation,infections, emotional trauma, genetics. Over time these factors manifest in organ dysfunction and systemic deterioration resulting in symptomology consistent with c ertain medical labels. If the dx criteria are precisely
met then those labels become your dx. If not, you are... in limbo!
You know all this.
Now back to the imbalance. Naturopathic approach minus the professional bias.
1 Complete nutritional and minerals panel (blood work and mineral tissue analysis). Any deficiencies must be addressed through proper diet and
supplementation. Also recommended in this step is complete nutritional metabolic (Krep's cycle testing) profiling. Including HCL and digestive function investigation, and food/liquids/meds reactivity testing
2. Complete hormonal/adrenal l hormonal blood test panel .
If any hormones are out of balance, hormonal modulation therapy
should be considered.
3. Infectious conditions need to be ruled out, starting with the easy ones
like yeast, parasites, bacteria. The low grade difficult ones have to be investigated after with specific testing, as discussed many times, here
4. Detoxification starting with the colon,Liver,pancreas,kidneys,lungs.
5. Oral and dental health investigation. The oral cavity is the source
of many infections affecting the entire body. Many leading researchers attribute most cases of RA and FMS to low grade infections starting from the mouth and inflammation. (hey, could this been an overlooked area in your case?)
6. Cellular health investigation, Mitochondial energy production,
endothelial integrity, cardiovascular  testing, blood volume testing.
7. Lymphatic system function investigation/lymphatic drainage.
8. Respiration and breathing investigation. ( All people that suffer from any
illness DO NOT breath properly! And this adds to their issues, greatly!)
9. PH must be tested and any acidic imbalance must be addressed with
an Alkaline diet.
10.Emotional imbalances and past traumas must be cleared with holistic psychotherapy.
So much for a brief reply, there's more but I'll continue another time.
gtg now!  
Love and hugs!
Niko
But
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1530171_tn?1362547225
This is a reply to a question at the Lupus Community a couple weeks ago,
in case you want to read the other posts in that thread.
I thought it was pertinent.

"You are  right to suspect that Lyme Disease should not have the
elevated ANA or other Lupus criteria.
You are so considerate to put your response in such a kind way.
Others could have just "attacked" me for my comments!

However, Lyme disease can trigger an autoimmune response
that mimics Lupus (or other conditions), which in turn after  
proper dx and  abx treatment (for Lyme) simply may just vanish- not consistent  with  any results from lupus treatment protocols.
(There have been  numerous confirmed documented cases. I haven't looked at any medical studies yet).
The real issue is that Lupus is a more "definable" condition, where conventional medicine has established some acceptable dx criteria, even if there's no curative treatment available.
On the other hand Lyme Disease is not a "definable" condition, conventional medicine has NOT established acceptable dx criteria and treatment, and is the subject of one of the major medical controversies in modern times!  I'm sure you are familiar with all this.
Therefore, it is my opinion, that Lupus sufferers (among other A/I disease
sufferers) are NOT being served well by the health care system, when the
ruling out Lyme Disease is NOT usually an option available to them!
  The complexities surrounding Lyme Disease approaches, are possibly
depriving thousands from a better and healthier life, and this includes thousands of Lupus patients, as LD is a curable condition and Lupus isn't.
So does Lyme Disease cause Lupus?
My answer is: I don't know and I don't think so. But it may trigger an
autoimmune response that mimics Lupus.
And that should be investigated thoroughly!
A mis-diagnosis is far worse than undiagnosis, as it determines and defines your long term treatment (wrong treatment) options -sometimes for life.           medical life sentence lol!

I hope this helps, but most of all, I hope it elicits critical thinking,
so some members of this community can potentially benefit from pursuing this further.
Blessings to all!
Niko"
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