Does anyone have knowledge/experience with vasculitis?
 

I'm at wit's end. I started having proximal muscle weakness with exertion February of 2009. After seeing a neurologist and a neuromuscular specialist I was offered a muscle biopsy March of of this year (tests for MG antibodies, NCV, and EMG were negative). The biopsy showed a dysimmune process consistent with either systemic disease or paraneoplastic vasculitis. There is inflammatory infiltrate around the small caliber vessels, nerve loss, and muscle atrophy and necrosis.

After about a year of just weakness followed by pain on the days following overexertion I started to experience pain with exertion, distally and proximally. Now I also occasionally have tingling and/or burning sensations in various parts of the body and cramping when using tired muscles.

I've tested negative for connective tissue autoimmune diseases, and the known vasculitides, and my inflammatory markers (ESR and CRP) have always been negative. My rheumatologist wants to refer me out of state to see a neurologist but is trying to figure out what else to do here because we don't expect my HMO to agree to this referral.

I kind of want to give up the quest for a diagnosis. Right now I'm "okay". I've just had to give up many activities that I once enjoyed. I'm used to a level of low-grade chronic pain, don't medicate for it, and deal with the overwhelming fatigue that comes with too much exercise by backing off and resting for a few days. My rheumy says we have to figure this out now before too much damage is done. "Now" is dragging on and on.

How can I have inflammation going on in the body when I have no positive inflammatory markers? How can the docs figure out if this is a vascular disorder or a neuropathic disorder?

Thanks for any insight,
Athena

An examination by a good vascular surgeon
is the only way to determine this.

I have an AI thing going on. Right now they call it Sjogren's, but who knows. I deal with a lot of vasoreactive type stuff. I have had a minor labial salivary gland biopsy with a lot of lymphocytic infiltrate in it. My muscle biopsy was neurogenic myopathy, not inflammatory. I would wonder if you could have polymyositis or something similar? I can barely use my upper body. I feel like my head will fall off and I can't raise my arms above my head without getting an awful headache 36 hours later. It isn't disuse, since I force myself to do stuff, like painting or cleaning, but, it really causes me issues. I always have some 'itis' going on....bursitis, tendonitis etc. I was on pain meds, went off for 6 months and ended up back on a low level opiate, which is OK....it doesn't plug me up too bad. My ANA has been high for a few years now. (They can't get an accurate lab when on IVIG). I am on IVIG.

I am wondering if they could try treating you with IVIG to see if it is effective for you?

These inflammatory, autoimmune things are sometimes very hard to pin down specifically, yet are very difficult to deal with.

I guess if they are offering you more diagnostics, I would tend to say, go ahead and have them.

Hoping you stay feeling 'ok'.:hug:

Some inflammation is chemical. (and does not always involve white blood cells or antibodies).

The chemical messengers released are signalers for other cells to rise up and fight the assaulting event.

These are called cytokines, and they are quite potent. Inflammatory cytokines do many things, healing, and also causing redness or tissue reactions (which may cause pain or discomfort).

I have arthritis and have had elevated ESRs for my whole adult life. But I don't have any other markers for inflammation. I do have a modest elevation just above normal in alkaline phosphatase and that seems related to the joint/bone arthritis.

Inflammatory cytokines are blocked when elevated by 1) increasing omega-3 fatty acids in the diet, 2) controlling insulin spikes by not eating sugar or high glycemic carbs in excess, 3) taking fish or krill oil to dampen the Cox-2 cytokines which come from diets low in Omega-3s.

Some people like antioxidants as well, to quench inflammation.
Grape seed extract is one commonly used, and there is an antioxidant naturally present in krill oil. Vitamin C is useful for maintaining joints and collagen production.

I have found that fatigue in general very responsive to d-ribose supplements. This is really helping me with stamina issues.
Also acetyl carnitine helps with mitochondria functions.

Here is my supplement thread with some suggestions:
ribose is near the end of that thread.
I haven't put up "everything" there yet, like lipoic acid.
But you can search "lipoic" on the regular PN forum and there are tons of posts about it.
http://neurotalk.psychcentral.com/thread121683.html

Polymyositis was the first consideration after having the muscle biopsy, but ruling out a paraneoplastic vasculitis is the first priority. Unfortunately, my HMO will not authorize the CT scan needed to rule out a mass. My rheumy doesn't want to treat with immunosuppressants until we have a more definitive diagnosis, which would mean going out of state to someone with the knowledge to figure this out.

In the meantime I lie around at night trying to figure out what I feel happening in my body, thinking I might be brilliant enough to solve this myself. The more I read, the more confused I get.

I think I'll try the nutrient suggestions given by Mrs. D and others that I've found in the forum. None of it is new. I gave it all a try last year while working with an herbalist. Maybe I (and he) just gave up too soon.

Hang in there! :hug:

Athena

Hi,

If you don't mind my asking, what tests did you have for paraneoplastic vasculitis?

Best wishes,

Sheltiemom

I had a muscle biopsy to rule out metabolic disease which showed a CD-3, CD-8 T-cell perivascular infiltrate in the small caliber vessels of the muscle, with death of associated nerves and neurogenic atrophy of muscle fibers with some necrosis. My biopsy was read by a neuromuscular pathologist here and sent to Mayo as a consult. All agreed that I have either an autoimmune disease (either mixed connective tissue or polymyositis) or a paraneoplastic neurological syndrome. My rheumy spoke with neurologists at Mayo and Johns Hopkins who favor paraneoplastic based on the lack of clear cut criteria on the biopsy and my symptoms.

The next step was to do imaging studies for occult tumors by mammography, chest x-ray, and colonoscopy. My HMO approved all that, since they are age-appropriate screenings anyway. I had bloodwork done for lymphoma, monoclonal gammopathies, breast and ovarian cancer, and also for ANNA's (antineuronal nuclear antibodies). There are many other antibodies associated with tumors that most frequently cause paraneoplastic syndromes, but I guess the trick is figuring out which one to order based on clinical presentation. A CT scan of chest, abdomen, and pelvis is kind of routine when paraneoplastic syndrome is suspected, but my healthplan does not believe there is enough evidence to justify it. Maybe they want a positive antibody first? Problem is an identifiable antibody is present in only about 30% of cases. Hmmmm. I'll refrain from ranting on HMO's and "patient care" and "preventive medicine".

Athena

Thanks for this, Mrs. D!

I guess there's no reason I can't have a cytokine response on top of the T-cell inflammation. Being the scientifically-minded person that I am I'm hesitant to jump in and start taking everything at once. Would you suggest starting with any particular supplement first and then adding specific ones along the way?

Athena

To start, the best way to lower Cox-2 cytokines is by dietary control.

1) reduce the amount of Omega-6 fats you eat. Too many of these are then converted to Cox-2 cytokines.
Increase flax oil and fish oil in your diet. Many foods now have Omega-3s added to them. Eggland's Best Eggs, peanut butter, cereals, mayo, butter substitute spreads (all by Smart Balance),
some cheeses and yogurts, even some types frozen chicken nuggets (we buy ours at Costco).
Some salad dressings have canola oil in them now. You can take flax oil in capsule form. 3 of those a day. Increase the ratio of Omega-3s eaten to the Omega-6's you eat --which are very common everywhere-- will reduce basic inflammation in the body.

2) Start with fish oil (or Krill oil). If fish: 3 a day to start if they are the regular strength or 1 double or triple concentrated type.
One or two Krill oil, (I use MegaRed), but there are others.
The fish oils go better with food.

This can have dramatic improvements on inflammation.
If you eat alot of sugar, that has to go also. Insulin spikes favor production of Cox-2 cytokines. The Zone diet was made to control inflammation and insulin levels. It is easy to follow and not dramatic.

If you decide to go with this dietary approach, you will need a Bcomplex and some magnesium, as the oils are metabolized best using them.

This is a very general easy way to start.

If you see some improvements, often within a month or so, you can then add other things. I'd do the grapeseed extract next.

I had a huge response to this routine 10yrs ago, when I started the oils. My asthma cleared up, my GERD went away, and my arthritis improved. At 3 months I was no longer using my medications for these problems! And back then we didn't have these new "smart foods" to help with it all.

Thanks again! I incorporated many of these changes into my diet a few years ago, and even eliminated the common food allergens - gluten, dairy, eggs, soy - just because, and felt wonderful. I've gotten lazy, though. I'll revamp my efforts and add your recommendations. It can only help.

Ummm, does high-quality dark chocolate have a place here??:wink:

Athena (hastily gobbling my Trader Joe's dark chocolate)