More from Dr. Me

Hi all.

My arms feeling somewhat better so I can type today. If you don’t already know, I have an inflammatory nerve disorder right now loosely diagnosed as mononeuritis multiplex (MM). This is definitely what I would call it, and this is the term usually thrown around by doctors, but it is not on my chart and that really bothers me (that’s why I say loosely – I have a doctor’s appointment in January to re-do my nerve conduction studies and then it should be official). I want an official name, even if it is only a name of the symptoms! MM can be caused by systemic inflammatory conditions such as lupus or rheumatoid arthritis (I have tested negative for both), diabetes, and other diseases – usually from vasculitis associated with these diseases that then causes nerve damage. About a third of MM cases are idiopathic (a word meaning “no known cause”). Who knows with me.

Mononeuritis multiplex is a term for small-scale inflammation in the nerves that leads to pain, numbness, and, potentially, partial to full paralysis. By “small-scale” I don’t mean small impact, I mean inflammation on a micro-level where you can’t always see the swelling looking at your body. Multiple nerves have to be affected to fit under this diagnosis. I have problems with the ulner nerves in my inner elbow (leading to pain and numbness in that area and swelling traveling down my arm to result in numbness and loss of movement in my 4th and 5th fingers), the carpal tunnel, and, most severely, in the tibial nerves in my inner ankles (called the tarsal tunnel area – this is why I can’t walk more than a couple of blocks or drive). Sometimes I have problems with the trigeminal nerve in my cheeks.

Also, it differs from the term “polyneuropathy” in the sense that the pain/numbness can be traced to one localized nerve in multiple places (as opposed to many small nerve fibers all over). For example, I have pain and numbness in my inner ankle that can be traced down the nerve pathway of the tibial nerve there. Instead of burning pain all over my feet that is more small-nerve fiber. Of course, I also have a ton of other wacky symptoms, including burning in my legs, that are seperate (or are they?…).

I hate not knowing exactly what’s going on and I hate having this. It has affected SO many areas of my life and caused me a lot of depression, anxiety, and helpless/hopeless/worthless feelings. I can’t drive, walk more than a couple of blocks, or be on my feet very long. It is very variable from day to day. Some days I can do a lot more than others. Like today I can type all of this and some days I start getting numbness after typing a few sentences.

Most of all I hate doctors and going to the doctor and HMO’s! I just get so nervous about all that.

Thanks for everybody’s nice words about B. B is doing much better. His doctor’s appt today went well.

Thanks also for your kind words about my grandfather.

I just want to do better at dealing with things. I just hate feeling stuck here, especially not getting to drive to the pool when I want to. For the record, I have pain when I drive but I still have a license. I can drive about a mile without much pain and without lasting effects. I just need to move within that distance of my pool. 🙂

Uh, I don’t really know why my post is about this today. I guess I just wanted to talk. Maybe will apply when I write more later.

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