New here- need your help and support, auto-immune/neuro-muscular?

[anabanana]

Hello everyone!

I have been sick with neurological/muscle issues for the last 2 years, with many tests coming back negative.

The only thing that has been climbing in just the last 11 months is the CRP(inflammatory), beginning 1.0 last september and now at 8.5 in August. No doubt something is causing this...

Initially, I had dry mouth for last 3 years before my lip biopsy in June, and the last 2 years progressing neuro/muscle weakness/aching symptoms and now vibrations/buzzing/tremors going through my limbs. I have muscle weakness in my legs/arms and I believe hips too (hip pain has increased in the last 2 years). I have trouble climbing stairs, walking, cannot get up from floor, and cannot run if my life depended on it. My muscles twitch(fasciculations) all over, but are most prevalent in my limbs, more prevalent in legs/feet. My EMGS/NCV did not show anything, at least that's what the NEUROS say. How can I be having all this muscle weakness with twitching (a clinical symptom of peripheral nervous involvement), and have negative EMG/NCV.
I feel like something is being missed; if you have any insight into this, please share...

Does this sound familiar to anyone here; could this be caused by auto-immune disease?

I am still negative on ANA/lupus antibodies/ sjogrens antibodies, but dry eyes (>4 ocular staining), dry mouth (.70 unstimulated salivary flow), and a .40 FOCUS score "focal lymphocytic sialadenitis. Report says it's suggestive features of Sjogrens. I also have a positive SCL-70 (scleroderma (just over 100)- what else could cause this to be positive?).

In the light of all my muscle/neurological symptoms and these recent results, I am not sure what to think and I am lost and confused. Any help and insight into my results and condition are appreciated. I have been suffering for the last 2 years with no diagnosis, no employment, and my spirit is dwindling. I wonder if this is some type of muscle inflammation happening or neuropathy, but not showing up on EMG/NCV-is this possible or could they be missing it on the electro-studies?

I hope to hear from all of you, I really need some support and guidance on what to do next.

Ana

[rnathans]

Welcome to the board but sorry you need to be here. You mention seeing a neurologist but have you seen one that specializes in neuromuscular diseases? If not, I strongly encourage you to do that. Small fiber neuropathy does not show up on EMG and requires a skin biopsy for diagnosis. That said your symptoms however do not necessarily sound like small fiber issues, or at least not entirely.

I have muscle weakness in my lower extremities coupled with abnormally brisk reflexes and spasticity. I also have some mild small fiber neuropathy manifested by some numbness and tingling but this is the least of my problems. It was only through finding an excellent neuromuscular neurologist who also consulted with a rheumatologist that I was finally diagnosed and began treatments. I am antibody negative. Lip biopsy showed some foci but not the magic number but rheumy was convinced I had Sjogrens anyway. Over the years I have been on various immunosuppresants. Currently I am on monthly IVIG treatments. None of the treatments have reversed damage but they have slowed the progression of my neuro symptoms.

I do not know where you live vut please search for a neuromuscular specialist, hopefully in a setting where there is also good rheumatology care.

[Diane63]

Hi, Ana!  I love your name!

Sorry for your difficulties.  I have a lot of your symptoms.  Well, I guess they're not YOUR symptoms, they are MY symptoms, but they are the same as yours.  Is that clear?  Anyway, blood work, EMG, lots of brain scans, spinal tap, etc etc etc - show nothing.  But I can barely walk without losing my balance, have tingling/electricity/pain in my limbs esp. right side., all the dry everythings, and so on.  A good rheumatologist who works with mostly sjogren's and fibromyalgia patients (already knew I had the fibro) dx'd primary sjogren's.

Seems this is a really screwy illness and manifests in lots of different ways.  You will learn so much here.  Hang in!

Diane

[Kendo]

Hello,
I agree - a neuromuscular-neurologist might help. I'm waiting (3 months now - in Canada) for one myself because of muscle wasting and weakness. I have a naturopath who is really like a metabolic expert and looks carefully at my 16 page summary of dozens of pages of lab tests. She noticed a slightly low potassium and supplements helped a lot with the twitching and the strange feeling of someone sitting on my chest and the palpitations. But my other blood tests don't show kidney problems to explain low potassium. But don't take potassium unless under a doctor's supervision! I stopped the supplements to see if I still needed them and got much weaker and saw the family doc who finally took me seriously!

I've met Sjoggies with various myopathies - dermatomyositis, inclusion body myositis and even some with dystrophies. There were many people with canes, walkers and wheelchairs at our Canadian Sjogren's Patient conference. Mine looks like mitochondrial myopathy at this stage of waiting/pre-diagnosis. I get heavy painful muscles, especially in my legs. Sometimes I almost trip because my feet are dragging as I walk. I even have problems with isometric exercise like holding the steering wheel of the car for more than 20 minutes.

This disease just keeps on giving but keep searching for answers. My family doc finally believes all my complaints and this last visit was very interesting. She said "Some people are in a prediagnostic stage and are told 'It's all in your head or you are crazy' but don't worry, I haven't given up on you". After four years of crazy rare metabolic/neurologic problems she believes I really have a disease. So keep on looking for what is wrong with you. Make sure you've had a basic metabolic/electrolyte panel done while waiting. I've had low calcium, low iron, low potassium and low white blood counts in the past few years. My main aim each year is to diagnose one more part of the puzzle and to stay out of emergency so I won't catch a nasty bug.

Good luck
Kendo

[trc1962]

Well, you sound like me! I too have a neuro-muscular issue that sounds very much like yours. I have been diagnosed with p. neuropathy in the small fibers. I was given aziathiaprine 8 years ago and in time it had excellent reults! I had a major flare 6.5 years later and my aziathiaprine dose was tripled and I developed a liver problem. Now, I am on prednisone (and look like a frog) and just yesterday cellcept was added. I am hopeful. When I was first diagnosed, I was very weak and had the facisculations, but in 4 months, the nerves and muscles healed. My neuro says peripheral nerves do heal fairly well a good majority of the time. Like you, I have no antibodies/markers show up, just elevated sed on occassion. I wish you well! Just thought you might want to hear from somebody who was very sick and recovered pretty well!

[Gayle]

Sounds like me! Well, my EMG was normal too. They thought I had CCD a form of MD.... so much for that with a normal EMG. It was eventually discovered that I have SJS and yes I have improved some but the tremors, vibrations, etc did not go away completely. It is better and 'doable'. Good luck!

[Winnie]

Ana

Welcome!  My question to you is are you seeing a rhuematologist and what is he saying about your positive SCL-70?  That is very specific for scleroderma and I would have that test ran again.

I research on this although I don't have a diagnosis either, I have dryness, mild joint pain, constipation, food allergies, telangiestasia, muscle twitches in lower legs and fatigue.

Scleroderma can have the muscle problems too.  My rhuemmy put me on plaquenil and is playing the wait and see game.  Don't lose hope.  I ended up on Zoloft because I just couldn't handle not knowing.  It has worked wonders.  If you are not satisfied with one doctor's results, ask around and find another one that will treat you regardless of bloodwork.

Winnie 

[Joe S.]

I recommend that anyone with an autoimmune disease should take my favorite three supplements: D3, R-lipoic acid, Acetyl-L-Carnitine. A friends son has MD. Mayo has been watching him die once a month measuring how much closer he is. He started taking these three supplements and started gaining muscle mass. The doctors thought their equipment was faulty. After a lot of test, and calibrations, they finally asked if he was taking any thing different. When they found out, they started a test program and promptly place him in the group that did not get the supplement. He has been going down hill since.

[kellyk]

My emgs are normal..the occasional one is what they call borderline...  I have had dozens of them.. I have had almost every test they could think of.. I have even had genetic testing.....I was even told I was crazy.. ( conversion disorder) ... 

After three muscle biopsies and told that I have a sjogrens related myopathy or early Inclusion Body myositis...   ... I am currently receiving IVIG and it has helped.. my strength has doubled... 

It took me 7 yrs to get to this point....I haven't had alot of help from Nueromuscular specialists.. all I can say
the emg is not conclusive the problem is the drs like to act like it is. they seem to be very black and white in their thought process.

I could not climb stairs.... lift a coffee pot.. etc.... I think the important thing is to find a dr that will support you  on your journey to figure out what is wrong.. and help you find a specailist that will figure it out... and the hard part it.. it might take a long time..

good luck and don't give up...

[Joe S.]

While I am glad that you found us, I do not like it than 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.

Sjogren's – 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. Don't 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 Sjogren's 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 S's of Sjogrens.

[Iwantmylifeback]

I have seen several using WALNUTS as one of their go tos.  I know I am a newbie, so, just wondering the benefit? 

[SueD]

Hi Ana,

Your symptoms sound exactly like mine.  I have been strggling to get a diagnosis for four years.  It started with the vibrations and began moving on from there.  I now have tremors and my muscles are deteriorating.  I have have all the tests and the only thing that has been positive so far is my lip biopsy for Sjogrens.  I just started have pain in my knees hands and feet.  Been seeing a neurologist but I think I need to go see a rheumy next.  Doctor is trying to get me into Mayo Clinic, but they are very selective and if you don't have a definite diagnosis I don't think they will see you.  I have been seen by a movement disorder specialist at a major teaching hospital two years ago but they dismissed it as in my head.  In the past two years my symptoms have gotten so bad, I had to quit my job.  I am not sure like you, where to turn next.  If I find out anything I will pass it on to you.  I know exactly what you feel like so please keep posting.  Maybe there is an answer

[quietdynamics]

Hello Ana,
If you update your profile to include your location and post your location in this thread...if someone has a Dr. to recommend they can get in touch with you.

My neuro symptoms migrate and change. Sometimes worse when under stress, sometimes, seemingly not. Fingers feeling like tuning forks, and once losing  about 80% of the use of my left arm for about a year. Then the use came back? Later, my right arm, but not as severe. Right hip going out... and body surfing down the stairs.  I did have pain with this and NSAID did nothing.

Like you my Neuro tests, including brain scan came back clean.

I do take the max dose of Cymbalta which has helped immeasurably and now I can go up and down the stairs, It can still take me two days to wash the kitchen floor, but I am building up some strength and can this year do light grocery shopping, a major improvement for me ..but I also take Nurontin and another sleep prescription at night..so that I am getting restorative sleep.

Rheum tacked on Fibro..even though I do not have the "pressure points",another misunderstood condition.

Joe your post about the man..is very helpful...thank you.

Ana while you are searching for answers and Drs. check to see that you are getting proper "REM" sleep. Sleep where you dream and wake feeling alert and refreshed (even if it does not last like it used to). That at least, is easy for any Dr. to address and is very important as you try to cope.

[Iwantmylifeback]

Just an FYI for erroneous test result possibilities.
We all have elevated CRP do to inflammation.  CRP also shows elevation do to many other things..ie heart muscle damage, large muscle damage, and infection.  SED rates elevate for the same and go crazy during infections.
Several years ago, after returning to work after back surgery, post op only 2 weeks, I fell and tore open the incision.  Kept working for 5 more days and started running a higher than my normal high fever.  Saw surgeon, he started antibiotics.  4 hours later with 106 fever my daughter,who is a nurse too, God bless her, had me direct admitted to the intensive care unit.  I remember nothing from being on the couch until 19 days later.  My surgeon had opened me up twice and I was full of (staph aurius, thank God not MRSA)  My CRP was 67 at its highest and sedrate was off the charts.  Our issues we have in my case anyway was that my white cell count which should normally run 7 - 12 when you are not sick and should have been 60,000 with a systemic infection only went to 5! I do not yet get above 2.5 when I am not fighting something.  Low wht count can be a indication of virus and was told for years that because I showed a low white count I must be having a virus as opposed to a bacterial infection...Not so for me it seems.
I guess my point to this is that there are so many generalized tests that cover so many other things that it is important to ask if there are tests specifically for what they are looking to find/rule out.  You must be your own advocate.  I think this is part of the problem with DXs taking so long.  You see several docs and they all run basic tests which may or may not be specific and may or may not be normal...So you keep looking.

Good luck in your search!

[Joe S.]

Black or English walnuts are often used a parasite cleanse.