Thinking of you today...
Seems like eons since I've seen you. How are you?
I am thinking about you. I hope life is happening for you, good things, blessings and IT is not being a daily occupier, a squatter..
Hugs..keeping well I hope.
Thinking of you today...
I have Lupus. So *^#@! what.
I haven't even been lurking here for quite a while, since the docs have been pursuing the Ataxia diagnosis. I just happened to come here today, I guess looking for something that makes sense, and found your post. I've been having an incredibly great summer, but dealing with some great frustration, too. Since you asked, would you mind if I lay it all out? Hopefully Saysusie will chime in with an opinion, too!
1. It all started last April, when my PCP noted the ANA ratio of 1:16. She put this together with my existing symptoms a) strange, flaky sores that appeared and then disappeared for past 6-8 yrs. b) diagnosis of Meniere's syndrome for 8-10 yrs. c) complaint of "I think I have arthritis", but no clinical proof. d) frequent UTIs and bladder/kidney problems e) occasional "killer" migraines. She suspected Lupus & sent me to an ENT and a rheumy.
2. The ENT confirmed the Meniere's and found that I have Spasmodic Dysphonia. He sent me to a specialist who now gives me a Botox shot into the vocal chords every 3-4 months.
3. The rheumy ordered more blood tests and said NO to the Lupus, but gave me cortisone shots in the knees and a prescription for a NSAID for Bursitis. He sent me to a neurologist.
4. Last fall, the neurologist saw my gait, noticed that I have nystagmus (eyes don't track properly), I have peripheral neuropathy in my feet and legs, and I didn't feel some of his tests on my legs at all. He thought that I have Spinocerebellar Ataxia, and ordered genetic testing. It came back with the results of "NO KNOWN SCA". He then sent me to the Movement Disorders Clinic at Baylor College of Medicine in Houston.
5. Feb. 2008 - I saw Dr. Jankovic and his residents at BCM. They liked the unknown SCA idea, but wanted lots more tests.
6. All through the spring, my balance was getting much worse and my right knee had gone from popping, creaking and occasional "giving out" to constant pain. I've also been waking up every night with pain, muscle spasms and sweating.
7. Last week of April - while the TAKS testing was going on at school, I spent a week in Houston. I had a lot of tests, including MRI, and evoked response test and a muscle biopsy on the last day. (I couldn't use my arm for a couple of weeks after that one). They are looking at the mytochondria and mentioned mytochondrial myopathy.
8. May - June I kept falling in front of my classes, because my leg was in such pain and was "giving out" with no warning. I worked at graduation on June 12, and was in horrible pain. I started getting up to take Tylenol in the middle of each night.
9. I called the Rheumy, thinking that another cortisone shot might help. Of course, he was on vacation, and the receptionist said that she'd have one of the other docs to call - they didn't. My PCP saw me, and sent me to an Orthopedic Surgeon.
10. He ordered more blood tests, an MRI and a Bone Scan. He said that I have a Bone Marrow Edema, which has led to Osteonecrosis (basically, the bone in my knee is dying and flaking away). He also noted that the ANA ration was now 1:32, so he thinks that I do have Lupus. He ordered me to keep all weight off of the knee for 2-3 months, so I've done all my traveling this summer with a rolling walker or a rented wheelchair.
11. When I got back into town, I saw the Rheumy again. He still says NO to Lupus. His blood tests showed elevated SS-A, which he said is what indicates Sjrogen's, but he doesn't think that I have enough symptoms for it to REALLY indicate anything, so he just gave me the usual cortisone shots and sent me away.
12. Meanwhile, my knee isn't hurting as badly as it did, but I still can't walk on it without it "giving out". I still have neuropathy and wake up at night with sweats, spasms and pain. None of the docs seem to want to address this at all.
I go back to the Orthopedic Surgeon on Aug. 14, and I'll go back to Houston on Oct. 13. (I can't wait to fill Dr. Jankovic in on all that has happened, and get his opinion. He's the one doc, other than my PCP, who listens to me.)
I'm REALLY getting tired of this roller-coaster ride. You would think that my body is trying to tell them that SOMETHING is wrong; I just wonder why they can't seem to figure out what it is. Now I wonder whether I do have Sjrogen's, but the rheumy just doesn't want to bother with checking deeply enough to find out. This will be another challenging school year for me.
My summer travels were great, even in a wheelchair. We spent a long weekend in New Hampshire for me to attend a Latin Teacher's Conference. 200 tipsy Latin teachers singing show tunes in Latin is fun! We then spent a week in NYC with our daughter, who lives in Greenwich Village. We saw the Museum of Natural Science, the Metropolitan Museum, did the Circle Line Boat tour, and ate at some amazing restaurants. We even got to see our daughter, the PHD, give a lecture to undergrads. (a proud parent moment). You haven't lived 'til you ride the NYC subway in a wheelchair.
Next, we flew to Honolulu. Jeff had a military TDY to Hickam AFB for a week. While he and his team worked, I played. We also had fun together when he got done at the base each day. The "mil;itary only" luau is the best on Waikiki.
The following week, we flew to Tokyo with half of his team while the other half went to S. Korea. We spent a week at Yokota AFB. Japan was lovely, and we very quickly learned our way around on the trains and subways. We saw some lovely temples, shopped 'til Jeff dropped and ate more sushi and sashimi than we normally eat in a year.
Now I'm still being a couch potato, hoping that my knee will feel better when school starts.
How has your summer been? Has anyone heard from ILoveHistory lately? I didn't see her name on any posts, so I'm wondering....
Thanks for asking about me, and thanks for "listening".
Please let me know if you or Saysusie have any thoughts on all of this!
It was so good to hear from you, it has been quite a while. It sounds like you have a lot of issues to deal with right now and that your rheumy is being less than helpful. I agree, it is obvious that your body is trying to tell them that something is wrong, but they don't seem to want to listen.
At the very least, if your rheumy doesn't want to diagnose you with Lupus, he should be doing more for your symptoms than giving you a cortisone shot! That is outrageous to me! Perhaps you do not have all of the overt criteria for Lupus, perhaps you have undifferentiated connective tissue disease or perhaps you have mixed connective tissue disease that has not evolved into any one specific disease. It should not matter, your symptoms should be treated, not ignored just because a definitive diagnosis cannot be made. It sounds like it might be time to either 1) have a serious talk with your rheumy about treating you or 2) find another rheumy; one who listens to you, takes your symptoms seriously and will begin treatment for you. Especially given the fact that you are also dealing with the issues with your knees and your balance. The roller-coaster ride is so unnecessary and unfair to you.
I'm glad that you were able to enjoy your vacation, at least. I hope that you find a doctor who will make this upcoming school year not so much of a physical challenge. I'm glad that you made it back to WHL and I hope that we can hear more from you. But, believe me, we will understand if that is difficult for you to do. Just know that we are always here when you need us.
We've heard nothing from ILoveHistory in quite a while. I sent her a personal e-mail and never got a response. I hope that all is well with her.
Also, St.James is having serious health issues (both he and his wife)and may not be able to come back to WHL. Rob is dealing with a health crisis also and has just recently been able to share some of his feelings with us.
I truly hate to lose family members because of health issues, but I also completely understand.
Again...I am so glad to hear from you and let me know if we can do anything for you.
Peace and Blessings
Look For The Good and Praise It!
Are you out there? Just my luck, I finally answered you, and the whole server crashed!
I saw the ortho guy on Thursday. The good news is that the X-ray showed that the bone in my knee has not collapsed. The bad news is that he still wants me to keep weight off of it for another 4 weeks. Then, I'll get another MRI to determine whether the edema has gone down.
This means that I'll be using a walker in school - oh joy, joy!
Both he and his resident seemed a bit amazed at the way my rheumatologist treated me. They both think that it is very plain that there is something autoimmune going on, so why not treat it as such?
I plan to present all of this to the docs in Houston in October. Perhaps they will have me see a rheumy there. Otherwise, I'll start looking for a new one here in S.A.
I just had another botox injection for my spasmodic dysphonia, but my voice still hasn't come back. I'm therefore doing the teachers' inservice week with no voice and walking with the aid of a walker!
How are you doing? Did you have a good summer?
I hope that you see this and answer!
I'm booting this up to the top again. Please answer!
Well there you are. Magistramarla and here I am...and how are you today?
It has been 4 weeks, had another MRI yet? How is the bone marrow edema? Deflating? Is that the x-ray that came back knee not collapsing from the Ortho Surgeon....
How has school been? Getting about with the walker since school started?
The site was down.
I was up.
The site was up.
I was down.
Now we are both in sync.
Sjogren's...are your eyes dry, how about your mouth. The could easily do a Schirmer's test which is done by using paper strips inserted into the eye for several minutes to measure the production of tears...or do take this quiz.
I do hope they find out what is causing all this within you...and I hope you find a new RheumBa too...he sounds, er ah incompetent. The disease is accumulate and not all at once. Do they have you on Nuerontin for your neuropathy?
Despite the fair ride...NYC. New Hampshire, Hawaii...Japan....what a summer. It is great that you were able to enjoy it, take in the sites...a luau. Did you enjoy any poi? The gray purple blob..ball?
Lovely to read you Marla.
Enjoy the evening...hugs.
I have Lupus. So *^#@! what.
WOW, it is good to know that you are ok. How are you doing? Has all the stuff that has been bothering you been resolved?
I had another MRI. The edema is still there, and the bone is cracking. I'm caught between two docs. The ortho is waiting for the rheumy to decide to treat my autoimmune problems, but the rheumy doesn't think that it needs to be treated. The ortho seems to be waiting for my knee to collapse so that he can justify a knee replacement to the insurance.
I don't seem to have the symptoms of Sjrogren's. I think that I just seem to have some sort of unidentified-as-yet autoimmune disease, but the rheumy just doesn't want to deal with it unless he can name it.
School is not going very well. I'm limping along on my rollator, and the kids are treating me very well. The administration is giving me headaches. They are not happy that I won't do extra "duties" and we have a new AP who is a SOB. I'm already extremely tired, and the year has just begun.
I'm hanging in there as long as I can.
Great to hear from you!
Did you not see my post?
Look For The Good and Praise It!
Which one, girlfriend? Which thread is it on?