Need some advice

[maya]

I've had all sorts of symptoms for about an year now. No definite diagnosis. I know many of you are going through or have gone through this phase. I'm just too tired. Sometimes I get confused, frustrated and depressed. I've had too many doctor's visits with too little outcome.

All my blood work for sjogren's was negative. I did not do lip biopsy although my earlier GP suggested that.

Dermatologist: 3 visits in last 2 months. Problem: skin infection and inflammation on my left temple. I've been having this infection for about 1 year now. Taclonex Scalp Solution keeps it under control. My wound culture was +ve for many things. Fungal culture came out to be positive. She thought I have Tinea Capitis and prescribed some medication which hasn't worked. Back to where I was with skin problems.

Neurologist 2 visits in last couple of months. Got MRI (Pelvis and Lumbar spine) done. MRI report suggested I might have "Piriformis Syndrome"! Neurologist wants me to meet a "Physical Medicine and Rehabilitation Physician" to get further opinion on "Piriformis Syndrome". Neuro mentioned that physical examination and my symptoms (no buttock pain) do not indicate this syndrome but MRI very strongly does.

Neuro wants to go down "Piriformis Syndrome" path. I asked him if he recommends me seeing a rheumy. Neuro wasn't very interested. He just brushed aside my skin problems and dryness. When neuro tested my eyes for dryness (about 6 months back) it appeared normal. Well, dryness in my eyes waxes and wanes. So he thinks I don't have dry eyes even though I told him I use 4-5 drops every day and an eye specialist had confirmed my dryness about 1 year ago. (Just brushed it aside)

Bottomline: Neuro thinks me having Sjogren is a slim chance. He is not interested in following Rheumatology path.

I'm going to meet dermatologist again. Also after meeting Physical Medicine physician, I will loop back with Neuro.

My problem is: no one cares about the big picture. I understand that they are specialist, but still! Every time I meet one of the specialists I feel like they are just trying to solve their part of the puzzle. My GP sort of has been acting as the person putting it all together. But I don't think she has enough knowledge about all these things.

I'm considering visiting a rheumy (maybe I can ask my GP to give me a prescription for second opinion). But I'm just worried about adding more to my confusion and pulling myself in one more direction.

Should I just wait? Maybe close the loop with the neuro and the dermatologist?

[Joe S.]

If it is an infection, try adding garlic and C to your daily routine to clear it up. Reflexology, Reiki and massage may help with "Piriformis Syndrome". Please ask your health care professional first.

[lynnmarie219]

Hi Maya,


I can relate to the confusion you are talking about with all of the doctor visits and especially when you aren't getting any answers! I would think that maybe a rheumy would be able to help you sort through this and maybe be the one that coordinates all of your symptoms and pulls things together for you...and if a referral is needed he/she would be the one to do it!

My GP and rheumy kind of coordinate things for me....but it all comes down to me being on top of everything! That's why I have my notes and a copy of all of my tests/procedures. You have to be your own advocate even though you may have a doctor who helps to coordinate and pull it all together with you.

[ktfabian]

Hi Maya-

I'm sorry to hear you're having such a tough time.  Do you have to have your neurologist's referral to go to the rheumatologist?  If not, I'd go ahead and make yourself an appointment.  If you do - could your family doctor refer you?  It's just a thought.

As for piriformis syndrome - I've had problems with my piriformis muscle since injuring my back 16 years ago.  The physical medicine person should be able to show you this really wonderful stretch you do to make it relax some.  If I don't stretch it out at least a few times a week, I'm sorry. I can't really describe the stetch - you have to lay on your back and gently pull one bent knee over the other then down (please don't try to do anything based on this description!) and you can feel the muscle tightness in your butt cheek.  Different physical therapists have different variations of the same stretch, but I've found the one I described works best for me.

I hope you get some help for the pain - I know this can be a really nasty place for spasms and pain.  Good luck,
Tracy