ariella

hi

I don't know why you're tolerating bread and junk food, but it often helps me to take a walk after eating. Gets the blood circulating I guess.

Ariella

Welcome Dave

With you on understanding how being ill has affected relationships/socializing. I've missed weddings (including my own sister's), many many social events (don't know if people understand why I can't "just sit ther"), dinner invitations and the funeral of a dear friend. I often say that this is one of the hardest aspects of being ill.

Wishing you to be able to get this all under control.

Ariella

Interesting question.

I am still waiting for the results to my lyme tests.

If this is lyme, on one hand I can definitely say that there was an extreme exacerbation of symptoms since onset of lyme (if this is indeed lyme). But, I think I probably have a predisposition to ANS issue to begin with. Doctor noticed a heart murmur when I was a kid, I remember having what seemed like an out of body experience as a child from taking benadryl, mom takes beta blockers for palps etc etc. but really nothing to write home about.

Lyme at this point would be a "neat solution" to the puzzle of why I've got ANS dysfunction, various aches and pains, flu-like symptoms for years, peripheral nerve symptoms, and more recently muscle weakness including respiratory muscles that looks ALS-like but is not ALS.

Ariella

ps Something I've learned from lymenet that may be helpful here is to break up paragraphs for those who are "neurologically challenged" (or otherwise POTSy ) Helps me a lot in reading posts!

Are the neuros you're seeing taking you seriously? Have they ordered MRIs? You mentioned that you had a nerve conduction study at age 16. Unless you were recently 16, I suspect they are looking at all your complaints (including dysautonomia) and giving you the cold shoulder.

ditto

when my dysautonomia was at its worst, I've had a pulse pressure of only 5 to 10 points diff. Not pleasant. Felt like I was fading out of this world. Happy to still be here!

thanks again everyone

I'm fine here in Jerusalem, the fighting is north and south, and we're kind of central. OK, Israel is about the size of New Jersey...

There's this amazing couple in my neighborhood who always think of everyone...Since I've gotten obviously sick 4 years ago, they have sent me flowers and cake (and sometimes meals if I'm really not well) EVERY single week. For four years.

Anyway, they bought tons of cakes and other treats and made an assembly line of tables in the central square of our small neighborhood, and packed hundreds of care packages for the soldiers, just to let them know someone loves them and cares for them.

Wish I could help. Hopefully my teenage daughter will be able to make it in my place.

thanks for your wishes

Ariella

Rebecca,

sorry about the horrible experience. It's bad enough when we have to educate our doctors through things we've picked up on the internet, but to even suggest you're an actress is unprofessional (that's the nicest word I can think of right now) Hey, if she was a male she would probably blame your ailments on being born female and therefore high strung.

Maybe it's worth lodging a complaint with the doctor? Is this the same doctor who was supportive in the past?

I dislike people who don't know how to say they don't know.

Ariella

hi

If you're anything like me, you're not going to want to hear this, because you've had your fill of doctors for 20 lifetimes, but this is something really only a neuro can evaluate. While you wait for the neuro, you may want to get some bloodwork done to rule out vitamin deficiencies, infections, lyme , coagulation issues, etc etc.

good luck

Ariella

Welcome home!

It's great they did the IVIG inpatient to start. As much as anyone hates hospitals, it sounds like they took an interest in you.

Any connection between IVIG and pleurisy? Weird immune response?

Pulling for you that this works!

Ariella

Glucose issues, if I'm not mistaken" are on "the list", especially reactive hypoglycemia. At my worst, my blood pressure falls out on me if I have sugar. I also bought a glucometer, and have noticed that my sugar will drop from exercise. Like down to 50.

Endocrinologist ordered me to pretend to be a diabetic in terms of diet. For now, sugar issues seem to have gone away. Hope they stay away.

Ariella

A year is ridiculous.

Have you had you sugar checked? I'm not a doctor, but I think all of the above can be caused by diabetes.

A year???

Ariella

hi

You already know that chronic low grade fever is classic for lyme. What you may not know (I didn't) is that the standard test that the primary will use for dx, the ELISA, is known to be GROSSLY unreliable. Especially in dx chronic lyme. There are a few specialty labs in the US that are known to do more accurate testing, such as Igenex, MDL, and Bowen.

I'm waiting on lyme results right now. I no longer have arthritis (that was a long time ago) but whatever I've got, lyme ore not lyme, has been morphing from one ailment to another. I've been dx and then undiagnosed with MVP, CFS, lupus, evaluated for MS with suspicious VEP, which turned to look more like Myasthenia Gravis (was treated for that for a while), Autonomic dysfunction (dx still stands), and now my muscle weakness is more ALS like but thankfully without findings on an EMG. Don't yet know what it is, but the fevers provide substantiating evidence trhat this is probably one wierd infection!

Ariella

Everyone here was very eloquent.

Just wanted to add that I would not force myself to drive a car when dizzy or fatigued. I was in a (thankfully) minor collision a few years ago directly due to POTS symptoms. Please use caution.

I think in general, and this is something I struggle with, that we sometimes buy into the "mind over matter" thing to the point where we endager ourselves. We believe that if only we were emotionally stronger blah blah blah we will be able to do anything and overcome all our physical limitations. Positive attitude is great only until the point that we can't accept our real limitations. IMO it takes more courage to accept what we cannot fix than going around bashing ourselves for not overcoming.

Ariella

hi Heather

Sort of...2 of my girls went. Apparently there were 10 busloads of people from the north there. My daughter's youth group greeted them with refreshments.

As for me, I don't do well in the evenings. BUT, there's a place at the top of the staircase from which I can see the Western Wall if I sit down. I go there very often to pray because 178 steps is just too much for me! I managed to get there yesterday.

(I know I probably look kind of strange sitting at the top of a staircase, but it's the best I can do for now, so let people think what they want! Someone once stopped and asked me if I had a place for dinner! )

Ariella

Also being tested for lyme

Dysautonomia + severe muscle issues + feverish episodes + exposure to ticks

You can find llmd listings on lymenet.org

Please keep me posted!

Ariella

Hi

Just got back from having pulmonary function tests. Unless I'm misinterpreting the results, they indicate possible "air trapping". Anyone have this with dysautonomia? I briefly saw some mention of motility in one of the articles, but it was too scientific for me to understand.

Have not yet spoken with my primary.

thanks,

Ariella

7 hours from NY

popping in here from the "middle east" to say hi

I'm here in Jerusalem, so we don't hear the rockets falling (about 2 hours from here). My POTS doc is actually in Haifa, not far from where one of the rockets destroyed an apartment building. Israel is one small country. We had a miracle very close to my home yesterday when police stopped someone suspicious looking, to find he was carrying a large bomb.

There is set to be a massive prayer rally asking for peace at the Western Wall at 6pm today. My kids are planning on going, I'm hoping to be able to make the walk as well (it's really close, just down a zillion steps from my apartment)

Wishing us all to hear good news.

Ariella

Just to say that the title of your post made me laugh...from the title it sounds like your husband is so stubborn that you'd like to replace him with a dog

Having this discussion with my 12 year old son now who fell in love with a puppy. We live in a small city apartment, plus can't handle the extra responsibility or expense (nor barking, I can't deal with any more stimulation right now). Not to mention I'm allergic. Son is heartbroken.

Hope things work out well for you and your husband

Ariella

Hi

Does you MG diagnosis still stand?

If so, you, please be careful with florinef, it's on the "bad list" for MG.

I had horrible muscle weakness from it and stopped it after a week. (My MG dx has since been revoked, waiting for revision!)

Ariella

How's that for a theory?

A lot nicer than my theory!

hi

Just to add my 2 cents

I don't like to suspect anyone, but it's awfully strange that the doctor would not be more understaning of your not wanting to risk this surgery.

Any way of verifying whether he is involved in researching this procedure, and you would therefore become his gineau pig? What does he lose by your refusal that would compel him to not advise you of the risks and then to be unsupportive of your decision not to take those risks?

hope I'm way wrong.

food for thought.

Ariella

Hi Sue

In the spirit of Melissa's stuffed cabbage, you can also make stuffed squash. Parboil the squashes, scoop out the insides, fill with cooked rice sauteed with shredded cabbage, onion, and the scooped-out pulp, and bake together, extra yummy with a sauce. I can sometimes get round squashes here, really elegant sidedish.

Squashes can also be sliced and cooked in a marinara sauce. Add mushrooms if you like.

One more for squash--sqewer and BBQ with sauce of choice, add cherry tomatoes to the skewers if you like.

My father plants a garden. My mom is trying to figure out what to do with the abundance of cucumbers. As a child I remember going around to the neighbors with brown bags of cucumbers and tomatoes.

Enjoy!

Ariella

I was on midodrine for several months when I felt that the effect wore off. I switched to mestinon, because of muscle issues (it's didn't react well for me together with midodrine). That worked well for a time and stopped working as well. Today I started midodrine again, after a break of about 10 months. I took a small dose to start, I remember having severe chest pain the fiirst time I tried it.

hi!

Wishing you that you get some concrete help for this "DD" of ours...that you be able to enjoy Dunkin' Donuts again (is there a store in your area?) without getting Dreadfully Dizzy so Don't Despair!

I don't look at going into art as an escape---I didn't ask to be sick,but I know my artwork and music is on a different level because of my sickness. I'm scheduled to record in studio tomorrow. Flutist and Mandolin/guitarist coming. It's still going to be in its rough stages after tomorrow's session, but I'll try to mail you a CD of what we've got so far. Going to take at least a week, though, from Israel.

Thinking of you, sending love and prayers.

Ariella