Going To See An Ms Doctor--hopefully To Rule Out Ms & Still Working With Oral Surgeon

[Maxine]

Hi folks---

As you know I have been working on getting my health care coordinated. This is not an easy task when I have other health issues not related to my POTS--------as these docs are out of town. I'm lucky in that Dr. Grubb is right around the corner. I'm probably the one person who lives this close to Dr. Grubb's office who has POTS. I doubt anyone else lives less then a mile away. However, I have my other health care in Cincinnati for EDS, and orthopedics for my spine instability. I have also seen neurosurgeons in Chicago, Cleveland, and NY. The one in Chicago did my cervical spine diskectomy/fusion--titanium plating. As you can see, I know what it's like to travel to get to the right docs.

I have been working with an oral surgeon to have a molar removed. At first he did not know much about the POTS/EDS isssues. Time dragged on, as we awaited insurance approval. This has been since March last year. Meanwhile two more consults with him, and a couple with my regular dentist to watch this tooth. The orthopedic surgeon learned quite a bit since March about POTS/EDS----cervical/cranial instability. He must have really taken me seriously, as he doesn't think the extraction should be done anywhere but a hospital. Another issue concerning him is my sleep apnea in regards to sedation also. I still have the problem with local anesthetics, and I saw an allergist.

My problem isn't allergies, it's a TOXIC reaction. I did tolerate carbocaine in 2003. However, in 2005 I did not tolerate lidocaine---but a lot more was used, as this was a different procedure, and the serum levels may have gotten too high. The oral surgeon said it didn't matter, as the cavity is too deep, and local anesthetic won't numb it completely, so I wouldstill need to be put out. The allergist said avoid local anesthetic---period. Insurance is dragging their feet still, and the coordinator and I have a ton of notes, and talked with several people with Blue Cross. At first I thought the oral surgeon's office was dragging their feet-----NOT----it was the insurance co.

Now the oral surgeon is referring me to a specialist in oral surgery at The University of Mich. He feels there will no question of insurance coverage having it done there, and the surgeons have a lot of experience with complicated cases, and they also have upper spine surgeons in the office who are familiar with this kind of cervical/cranial instability.

NOW-----regarding the appointment with the MS Doc on Feb. 15th. This is because of lesions on my brain. A few in the periventricular region, and now I have one in the mid/central medulla region of my brain. The one in the medulla is of more concern----not a good area for a lesion. Actually, there isn't a GOOD area for lesions, but you know what I mean. I'm having more neurological issues not related to ANS dysfunction, and more or less related to the lesions, or possibly the cervical/cranial instability. Both the CCI and MS can share some of the same symptoms. This is very confusing, and I need to have a good neurologist that knows how CCI can affect a person neurologically-----BUT also knows a lot about MS, and not confuse the two. At first my regular neurologist locally was going to order an LP, but we have cancelled that because of the EDS, and the tissue instability. LPs can be dangerous with EDS that has vascular problems.----especially with hypermobile spine causing severe instability.

After another appointment---(this time with my neurologist's NP), we reviewed the clinical notes, and she will send me to an MS specialist. She is still going to see me in April, but has referred me to the MS specialist due to the lesions, and recent increase in symptoms that could be related to those lesions. (speech problems/slurring, more buzzing/tingling legs, arms, hands, and feet, vision problems, legs and arms weakness, choking, swallowing problems & worsening fatigue.)

The other day I tried compression hose. They helped with me with my gravity/OI issues, but not with the BP----it was still low when standing. Another problem is putting them on. I can wear them only when my husband is home to put them on me. I can not pull them up! I did this for the person fitting me, and messed myself up. I found this out while bathing, and I reached behind my back to wash it, and I thought my cranium and neck were coming apart. It felt pretty scary, and very painful. I seriously thought I was in big trouble, but this feeling passed. This was a subluxating issue, and the area of my chest/sternum, clavical, neck, cervical/cranial area feel wildly out of control lately. I can't move my upper body without getting pain in any one of those areas, and some of them trying to subluxate. Can you imagine your cranium/neck area subluxating.?? ( atlantoaxial subluxation ) If your CCI is bad enough, this CAN happen.

Sadly, it's difficult to cradle my new granddaughter. She has already gained one pound, which makes her over 9 pounds at two weeks old. I don't know what I'm going to do about that.

I pray I don't have MS, as I can't imagine having this on top of my other existing health problems.

This instability is insane, and I'm sure I'll make an interesting study subject for Dr. McDonnell at NIH/NIA when I go there April 3rd, and 4th.

Today I spoke with the the nurse/coordinator at the oral surgeon's office, and she said the Doc sent the referral letter to the University of Michigan oral surgery. I think it's the same group as another person with EDS goes to who has severe TMJ issues. I have TMJ, but no symptoms from it that I know of.

I wish this all was a bad dream, and I would just wake up.

That's the update for now----

Thanks for taking the time to read.

Maxine :0)

[dizzygirl]

well girl its good that they are sending you to a dr that is more uh qualified!! maybe that will make things easier...

BIG HUGS to you i know you got lots going on.. and im sorry that its difficult to hold your baby girl grandbaby.. that is so sad and really bites...

hang in there!

love you!

i couldnt find a pink panther giving a hug.. BUT this one was cool.. and give you the HUG impression! HUGS!!!!

[Rachel]

Hi Maxine,

Thanks for the update. I hope your appointment on the 15th goes well and that the doctor will be able to give some clear answers. Let us know what you learn.

That's sad that your granddaughter is getting too heavy to hold at only two weeks old. She's so sweet - I'm sure all you want to do is cuddle her.

Gentle Hugs,

Rachel

[bellaluna]

I'm sorry you're going through all of that... it sounds really rough. I can't really offer any words of wisdom, except for one thing. I'm sure holding that beautiful grandbaby of yours is so special, and not something you want to miss out on. When my kids were babies, I found that using one of those "boppy" cushions really helped. It is shaped like a C and you just put it around your waist (so it looks like an inner tube) and then you can use that to help support the baby's weight. I found it made a big difference.

Hope that helps a little, and I hope that you can get some answers on the other issues soon too!

Mary

[Maxine]

Dizz, Rachel, and Bellaluna,

Thanks for your support, kind words, and understanding-----

Dizz, I love it! I saved the picture with the rest of my pink panther favorites---

I'm looking forward to the study at NIH in April, as I think this will help a lot with giving me more direction on how to better care for my medical needs. The appointment with the MS doc will hopefully rule that out---

My instability is really giving me a hard time, and I have to be so careful with body mechanics. I cincerely hope the The University of Mich. Oral surgeons can help me, as I know they have more experience with complicated cases. I'm happy that my local oral surgeon cares enough to help me get the best possible care for my difficult situation.

Hopefully some of this will come together, and I can feel better..........

Maxine :0)

[pat57]

Good Luck, it looks like your making headway.