View Full Version : Follow up-my doctors visits

04-08-2008, 09:36 AM
Hello everyone! I want to thank all of you who helped me feel validated. This has been a tough flare for me. It has been the first time I have had to change for now at least..my lifestyle..my work schedule..my daily routine..I had to realize I absolutely just CAN'T do it. Still, my diagnosis isn't quite there yet. However, despite the sometimes confusing messages I get from my Rheumy, I do have a doc willing to treat and investigate further. I have a good neurologist and I have an understanding (over time and with help from others, like people here) that it is never an easy process..and it is a process.

So, my doctor's visit brought about more questions...she wanted the sore on my head biopsied for discoid lupus, she wanted and EMG/possibly a muscle biopsy. I had my EMG which showed an worsening of my neuropathy in my right peripheral nerve-and my left is not that bad. My neurologist also notice my balance is very bad..a little worse than the neuropahty should make it..so he ordered an MRI of the brain. He plans to speak with my rheumy -he believes strongly the neuropahty is consitant with connective tissue disease because of the Asymmetrical nature of the nerve damage -He also mentioned something about probable vasculitis - and he lost me a little there. He is not sure about if I will need the muscle biopsy-and seemed like he would rather me not have to go through that...at this point..I am wanting to do anything to know for sure what my diagnosis is. I know it can take years..but for me..it has been 4 years already!

I believe I am getting closer to a diagnosis. So am a treating myself as well as possible and resting when I can and when I feel I need to--which is very often. I am trying hard not to worry about things I have no control over now..like not working and not being sure about long term stability of my employment. I am taking care of me so I can be in the best health possible. :)

If anyone knows much about the vasulitis and how it relates to connective tissue disease/lupus..ect. That would help..he mentioned he was pretty sure I had that....

Thanks so much


04-08-2008, 05:25 PM
Hi poetgal:)

I'm glad you had a productive visit with your doctor. It does sound like you are on your way to getting sorted out. And I'm also happy you are taking good care of yourself.

I'm sure someone will be along shortly who can answer your questions.

04-08-2008, 05:36 PM
Hello -

I am glad to hear that you are taking care of yourself through this process. Sometimes, it is hard to give yourself permission to slow down. I have learned that when I push it too far, I pay for it...and pay for it....and pay for it. I know this diagnosis process is so frustrating. Stay with it. Research. Learn. Ask questions. Be in the process...don't be a victim of it. I learned this valuable lesson from my current Rheumy. She is rheumy number three for me, as rheumies go. She is a cancer survivor and one incredible human being. She has taught me to press on. I can't thank her enough. As for rheumies number one and two, they were fired by me for not paying attention and for not giving a flying pig about me, or my health, or my recovery.

Stay strong and stay focused on your goal, which is to lead the healthiest, happiest life possible. Today. Everyday. No matter what it is called. No matter what they say. Keep us posted on your progress.

BTW, if you Google "vasculitis" you should come up with some articles on the subject. I think there are different kinds, with the autoimmune form being similar to an inflammatory process in the blood vessel systems of your body. I'm no doctor, and I could be wrong about that, so do your own research and be armed with information and questions if that's the label they eventually put on it. Remember, knowledge truly is power.

Be well.


04-08-2008, 07:43 PM
Lupus is a disease that causes inflammation in every part of the body (systemic). Vasculitis is inflammation of the blood vessels. Inflammation is when tissue is damaged by blood cells entering the tissue.. In diseases, like Lupus, the damage is done mostly to white blood cells. White blood cells serve as our major defense against infection. In healthy bodies, it is the white blood cells that destroy bacteria and viruses. But, they do damage to normal tissue if they invade it.
Vasculitis can affect all of the blood vessels (very small blood vessels known as capillaries; the medium-size blood vessels, known as arterioles or venules; and the large blood vessels, known as arteries or veins.
When a small blood vessel is inflamed, , it may break and produce tiny areas of bleeding in the tissue. These areas will appear as small red or purple dots on the skin.
If a larger vessel is inflamed, it may swell and produce a nodule which may be felt if the blood vessel is close to the skin surface. The inside of the vessel tube may become narrowed so that blood flow is reduced.
The inside of the vessel tube may become totally closed, usually by a blood clot which forms at the site of inflammation. If blood flow is reduced or stopped, the tissues which receive blood from that vessel begin to die.
For example, a person with vasculitis of a medium-sized artery in the hand may develop a cold finger which hurts whenever it is used. Occasionally this can progress to gangrene.
Vasculitis can occur in many illnesses and Lupus is one of those illnesses. Some of the symptoms are similar to those of Lupus and other diseases of the immune system and they include: fever, generally feeling bad (malaise), muscle and joint pain, poor appetite, weight loss, and fatigue. Vasculitis can also cause systemic symptoms throughout the body (heart, lungs, kidneys, eyes, etc.).
The blood tests for vasculitis are looking for these abnormalities: an elevated sedimentation rate; anemia; a high white blood cell count;
a high platelet count.
The blood tests are also be used to: identify immune complexes or antibodies that cause vasculitis in the circulation; measure whether complement levels are abnormal.
If there are any symptoms that suggest heart involvement, tests that may be ordered include:
- EKG (electrocardiogram)
- ECHO cardiogram
- heart scans.

For lung symptoms, your doctor may order:
- a chest x-ray
- blood from an artery to measure the oxygen content
- a pulmonary function test, which uses a specialized machine to measure how well the lungs handle air and oxygen as you breathe into it.

For brain symptoms, the doctor may use:
- CAT scans
- magnetic resonance images (MRI).
Treating vasculitis will depend on several things:
the severity of the vasculitis; your general health; your past reactions (positive and negative) to medications.
Many cases of vasculitis do not require treatment.

Most physicians recommend treatments such as: prednisone; prednisolone
methylprednisolone (brand name: Medrol). For severe vasculitis,
doctors may suggest that you be treated with cytotoxic drugs.
Cytotoxic drugs kill the cells that cause inflammation in the blood vessels. The two most frequently used are: azathioprine (brand name: Imuran);
cyclophosphamide (brand name: Cytoxan). Cytotoxic medications are usually used in combination with prednisone and are quite effective in treating vasculitis.

I hope that I've answered your question. Please let me know if you need anything further!

Peace and Blessings

04-08-2008, 09:29 PM
thanks very much for all that information...very helpful!! so it looks from here as if vasculitis can happen independent of lupus as well. My neurologist seems to be guessing because with Lupus things tend to be asymmetrical and my neuropathy is asymmetrical. I suppose this is why the muscle biopsy will help. From this information i still don't understand how the Neuropathy in the foot led him to vasculitis!! But I bet he knows!!! LOL :roll:

04-09-2008, 03:40 PM
Keep us posted :lol:

Peace and Blessings

05-22-2008, 05:40 AM
Hey Poetgal....

Just when you found us..the site went poof. Wondering if you got lost in the change. Took a few weeks for the site to come back. Hoping you will come back to you and this post is sending you a reply email that we are here...

How did your tests come out? Did you have the EMG and the muscle biopsy? ..did you find the answers regarding the neuropathy in your foot. I am hoping it has resolve..

We're thinking about you and hope to hear from you soon.