Anyone with Positive Spinal Tap here, my symptoms, and Need your insight please

[anabanana]

Wish a happy new year for everyone here suffering...

The worst thing is not having a diagnosis, it is torture, and I'm only 37.
I am having a hard time coping, not knowing what this really is.

My labial lip biopsy showed mild infiltrates, along with the dry EVERYTHING, seronegative autoimmune abs and only a high C-reactive protein of 8.9(slowly rising in this last year from 1.0). I have prominent tremor in one arm, but shakiness throughout my body. I feel uncoordinated and my legs shake going down stairs, and cause strain in my knees and hips.   I cannot hold my 10 pound cat, as my arms ache and strain immediately.  I keep wondering if this is sjogrens type syndrome and I wonder if not this, What else could cause this constellation  of symptoms and biopsy results--insight anyone into this???

What complicates my case, is that I not only have slowly progressing muscle weakness over the last 2.5 years, muscle twitching, pain in both feet-heels-and a cold burn in my feet. EMG' s have been no help to explain my weakness and twitching; can anyone confirm that autoimmune diseases from your own experience cause muscle twitching. When I ask neurologists, they don't seem to think so. Obviously, the dreaded motor neuron diseases is the huge fear, yet 2 Emgs have not shown anything, at least what I was told.  I am so stressed when I feel these twitches along with having muscle weakness, because I fear the worst.  If anyone could help calm my fears, I would be very grateful.

So my spinal tap came back with 1 big abnormality, multiple restriction bands in both the spinal fluid and the serum. It is my understanding that this is called a mirror pattern, but I am having little luck finding information on other etiologies that can cause this reaction in both. My understanding is that there is inflammation(most likely) leaking these o-bands from blood into my central nervous system, but the lab report could not confirm either way the origin of the o-bands.
If anyone has a personal understanding of these spinal tap results/ o-band pattern, please explain it to me. I read that other autoimmune disease can cause these results, as well as paraneoplastic syndromes, neuropathies, and MS to lesser extent.

I have an appointment at a MS clinic in 2 months, but it is cruel that the former neuro would not explain the results and passing the hot potato. It makes me sick how they don't care.

I feel so alone and need your support and insight
Thank you for reading my story.

[Joe S.]

Anabanana, I am going to say welcome. Here is my traditional tips.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[anabanana]

Hi joe, thanks for the suggestions.
What makes it hard is not knowing what this truly is, SJ, or something else.
I think that the muscle weakness with fasciculations concerns me most and has given me so much stress, it's unbearable. If I knew for certain that my symptoms were caused by autoimmune process, it would relieve some of that stress. I do have infiltrates, high CRP,, and inflammation in spinal fluid, so I hope that leads to a diagnosis of something less than my nightmares.

I do forget to breathe with all this stress, and keep trying to fix my poor sleep, the stress adds to it.
I am trying tart cherry juice concentrate for sleep and inflammation, I read good things about it. I read that melatonin is bad for people with autoimmune stuff going on, so I will no longer take it, too bad, it helped, but this cherry has natural melatonin and is not contraindicated.

I am also thinking turmeric pills, but I've heard warnings about it being harmful to liver, so wondering what low dose is best.
Cheers!

[brooklyntina]

Hi and welcome!

My spinal tap showed positive for ANA's just like my lacrimal biopsy. I've had multiple (non Rheum) dr's tell me I have SJ and not one rheum will confirm it. My partroid glands are fine you see. It's hellish not "knowing" but I've accepted that I have a version of SJ or a partially presenting case. What can you do? I have literally all the symptoms except puffy jaw. Meh.

Good luck and hugs!

Tina

[Joe S.]

Many years ago, I had a mylogram. Part of the process is to withdraw spinal fluid, then inject a contrasting dye for the X-rays. The contrasting dye came from some European company that was re-bottling contrasting dye from Kodak. The dye used on me was for testing metals and not for use on humans. It contained sulfuric acid. The number of people paralyzed from the waist down in the US is unknown. There were over 200,000 in Australia. I do not know how many were in Europe. I had to change the energy flow in my body and have more then 5 years of physical therapy to learn to walk again.

Also the puncture leaked and my hospital bed was covered in spinal fluid. I guess you could say I had a bad experience.

[brooklyntina]

My goodness Joe that's awful!

[Joe S.]

I am not in a wheel chair yet. It's okay for me. Life goes on.

[Nancy60]

Hi Anabanana,

I'm sorry you are going through this, it is very hard not knowing and waiting for the specialist appointments but the fact that your neurologist referred you to a more specialized clinic is confirming that he thinks something is going on and needs more expertise to help sort things out.  There are several people on here that had neurologic involvement with their Sjogren's, but it often involved small fiber neuropathy (sensory).  I believe myositis can also occur in Sjogrens which might explain the muscle weakness.  but certainly getting other neurologic disorders ruled out/in is important to understanding what is going on with you and determining treatment.

I used to have muscle fasciculations when I was first diagnosed and my Neurologist wasn't very concerned about them either, but I haven't had them in several years now, in fact I had forgotten about them until you posted.  My Sjogren's is pretty well controlled now and I don't have much problems with it so maybe that is why the fasciculations stopped, I don't know.

I hope you get things figured out soon, waiting is so hard.  In the meantime, come here for support and questions.  It is a wonderful site.

Nancy