Broken_Shell

Hi,

If someone has a B12 deficiency, then it may be due to a lack of something called instrinsic factor, which is necessary to absorb B12. A Schilling's Test is needed to evaluate this. Your friend's doctor needs to order this test, and should have done so already when the level came back low. Depending on the results of the test, your friend will either need to take oral B12 supplements or receive B12 shots.

Best Wishes, Broken_Shell

Hi Michele,

Ok... interesting because I have never heard anyone describe that before. I also have something very similar to the experience that you describe after walking, and I have told my family about it for years but have no idea what it is. Everytime I go for a walk this happens, even if I have only walked a few minutes. If I look at anything with a "texture" or pattern - for example: the carpeting, the paint on the wall with the little sand specks in it, my leg (I usually have either a red or purple pattern on my legs, especially my knees), etc. - I feel like it's falling into a central point that I am looking at. I know this is wierd, and I don't really know how to describe it. It's like wherever I look is the central point.. for example, the place on the carpet where I look is a point and the resting of the carpet seems to be "moving into it" from all directions. I don't know for sure, but when I read your description of how you feel after walking, it was the only time that I have ever heard anyone describe something similar to what I experience. I am not sure what it is, but it usually passes within about 30 minutes after I stop moving. Regarding your other list of symptoms, I have highlighted below. Hope that helps!

~ Broken_Shell

? Malaise ? never feel good, vague feeling of something ?not feeling right?

? Extreme pressure in base of head/neck (usually happens upon standing or bending over, sometimes in conjunction with becoming lightheaded but not always)

? Lightheaded constantly- blood pressure always low. Drinking a significant amount of fluids or taking in salt has no effect

? Dizziness

? Feeling as if I can't take a satisfying, deep breath

? Feeling like I need to catch my breath, need to take a deep breath

? Feeling ?out-of-it?, Brain Fog. Like I am living in a dream. Everything looks fuzzy and I feel like I am just very ?not with it.?

? Heart pounds strongly after standing or minimal exercise, causing the need to stop and take deep breaths. (Echo showed ?sluggish heart? but Stress test was negative) - I have a lot of times when my heart feels "funny" or "strained"

? On the verge of syncope on multiple occasions

? Fatigue

? Difficulty swallowing- feels as if muscles in throat just freeze

? Slurred speech, problems getting out what I want to say

? Feeling as if someone is shaking my head back and forth, brain feels ?wobbly?- usually happens after turning my head quickly but not always

? Creaking/cracking in base of head/neck (usually upon movement but sometimes while head and neck are still)

? Increasingly significant tinnitus/pulsing sensation in ears (with my heartbeat)

? Ears constantly ?go out?- Everything will sound distant

? Left ear feels ?full/stuffy?, constant need to ?pop? or ?crack?

? Shooting pressure, occasionally in conjunction with pain, up the left side of neck

? Stabbing pains in head, occurs for a few seconds then dissipates. Sometimes this will happen a few times sporadically, other times over the duration of hours or days

? Visual problems - not sure exactly which catergory to put some of them under, my vision just seems "off" sometimes

o Trailing vision

o Shaky vision

o Flashing vision

o Extreme after images

o Bright lights, clouds

o Black/neon spots

o Palinopsia (visual snow)

o Occasional episodes of double vision

o Blurry vision

o what looks like millions of tiny particles-- it looks like i can see air, words moving on paper while reading and looks as if the floors is moving like waves sometimes

? Muscle twitches/spasms

? Tremors (mostly in stomach, not visible to the eye) - people can sometimes feel this if they lay next to me

? Occasional teeth chattering when I start feeling sick, then come the tremors, nausea, and the chills

? Nausea, lack of appetite, loss of 25 pounds over the course of 4 months (I had a large weight loss of about 15 pounds when I first got sick and then have gradually lost about 10 pounds over the last few years after being a stable weight for about three years)

? Occasional neuropathy - shoots down arms

? Irregular menstrual cycle (ranges from 18-41 days) - I became ammenorheic for several years.

? Feel very ?hypersensitive? - mostly with medications or proprioreceptive stimulus to light, sounds, movements (unable to be where it is loud and has bright lights- this has squashed my whole social life) After being in a stimulating environment I will feel over sensitive to everything and "wired"

? GI Issues- I'll leave it at that

? Bladder pressure/tingling sensation after urinating on occasions

? Feel full all the time, no appetite, cannot eat large meals anymore

? Head rocking (my head shakes up and down in what seems to by rhythm with my pulse)

? Throbbing/pulsing sensation in my head/neck/face (it feels like I can feel my pulse in my brain)

? Sensation when I'm laying down as if I am rocking on a boat or the bed is moving - I feel this way a lot when I eat or when I am upright, feeling like my blood is rocking up and down my body

? Body rocking while sitting up(my body actually rocks back and forth involuntarily on occasion)

? Problems sleeping

? Exercise Intolerance, I used to exercise all the time, now sometimes I need to take deep breaths after walking up the stairs. My visual problems also get worse upon exercise; it looks like the floor is falling in everywhere I look - read my above comments.

? Cannot tolerate the heat/cold. (I get extreme pain in my ears and head after being out in the cold for a brief period of time.)

Hope that all worked ok with the coloring...

Hi All,

Several of the women on the forum have talked about how our symptoms are worse with hormone fluctuations and the menstrual cycle. I am wondering if those of you on some type of birth control or hormone replacement would mind sharing what you are on. I have tried birth control pills in the past (Ortho Tri Cyclen Lo) but felt really jittery on them. I am now on low dose patches (the kind used to treat menopausal symptoms), but they don't seem to be suppressing my own cycle enough. I am also looking for something that would allow me to not have periods... my body is just not strong enough to handle monthly bleeding. I know there are many options for hormones out there and am wondering what any one has found that they can tolerate and helps to reduce their hormone-aggravated symptoms of dysautonomia. If you have had any negative experiences, please share them as well. Thank you in advance!

~ Broken_Shell

Hi,

Yes... I often have this problem, especially when I am having a "bad" autonomic day. Eating makes me get flushed (usually just the right ear and right side of my face). I usually get very dizzy when eating when this occurs, and I am feel very woozy and "out of it".

If this seems to happen following a certain food, then you may also want to investigate the possibility of a food allergy.

Hope that helps!

~ Broken_Shell

Hi Sandra,

Welcome to the forum. It sounds like you have a lot going on in terms of both symptoms and established diagnoses. After reading your post, I think that it is certainely likely that you may also be experiencing dysautonomia in addition to the other conditions you mentioned. Furthermore, it seems that dysautonomia is often found in conjunction with some of the other diagnoses you mentioned, especially gastrointestinal problems and myofascial pain. It is certainely worth bringing this up with your doctor and getting elavuated by a physician who specializes in autonomic dysfunction. Make sure that you find out who is familiar with autonomic dysfunction because many neurologists, cardiologists, and other doctors have never even heard of this syndrome and are not knowledgable on how to diagnose or treat it.

To answer your question, YES - dysautonomia waxes and wanes, has flares, etc. For most of us, this means that our symptoms vary from day to day and even minute to minute. When I first developed dysautonomia, I had "episodes" every few weeks from which I would recover. Over the years, my condition has progressed to the point that I am disabled by symptoms on a daily basis, and I am unable to drive, work, or leave my house except to go to appointments.

I also have very bad muscle spasms and tightness in my neck, face, and head. I think that people can have a variety of "strange" symptoms from problems in this area. Have you been evaluated by a physical therapist who treats the neck and TMJ area? That beng said, a lot of other people on the forum have talked about neck and head pain and discomfort, and I don't know whether the root cause of this is the dysautonomia or a seperate myofascial problem. I have been receiving physical therapy (craniosacral therapy and Upledger myofascial work) for nearly two years. While it helps to "damage control" my neck, head, and jaw symptoms, I don't make much progress and my pain doctor, neurologist, and PT aren't sure why my body can't stop sending everything into spasm and tightening up.

The one thing that you say that makes me a little hesitant on saying that I certainely think your symptoms sound like dysautonomia is that you said that they improve with activity. I personally, as well as what I have gathered from other forum members, feel the best when I am laying down, and I have a very difficult time functioning in an upright position. Still, that doesn't mean that you don't have dysautonomia... it is a syndrome that is diverse and symptoms can vary from person to person.

I would suggest that you read through some of the information and posts on this site, as you can really learn a lot and you can compare your story to those of other members. You can search for specific symptoms using the search tool in the upper right corner.

Best wishes. Keep us posted and don't hesitate to post other questions that you have. I only joined the forum a month ago, and have found that everyone here is very supportive and a great resource.

~ Broken_Shell

Hi Dani,

Welcome to the forum. I became a new forum member several weeks ago and have already found a wonderful amount of support here. I am sorry to hear that you are struggling to finish school, but I completely understand. Two years ago I had to leave graduate school because I simply could not function anymore due to my increasing symptoms of dysautonomia. It has been very disappointing, and I sincerely hope that you are able to somehow earn your well-deserved degree!

Hang in there with the brain fog symptoms... I hear you and couldn't even count the number of times that I have felt "out of it","drugged", "not all there", "like there's not enough blood in my head", etc.

Have you had much success with finding any helpful treatments? I am still searching, but the forum is a great resource for information.

Looking forward to seeing your posts, Broken_Shell

Hello,

I wanted to ask everyone about this before and decided to make a post after reading the following in another members reply to a previous post...

"...crowded stores/restaurants make me feel dizzy/wierd, etc."

I have a lot of problems with feeling woozy (different than light-headed) and spatially disoriented (like I am tipping or my head or neck is "shifting" or the floor is moving under me). Very strange... I know, I'm just not quite sure how to describe this sensation. I rarely leave the house to go anywhere other than appointments, but when I do, walking around and looking at things in a store makes these symptoms worse. I also get these same symptoms at home if I do any activity that involves moving my head around, so I think it is the movement of looking at things in the aisles of a store that makes it worse. Even if (on rare occasion) I do not have the spatial disorientation when I am going into the store, it starts and becomes quite severe within a matter of minutes of looking around. The symptoms also seem to be associated with tightness and pressure in my neck, head, and face.

I am just wondering if anyone else has experienced anything like this or has any ideas. I know that this is purely a physical sensation, and it is not associated with any type of anxiety or worry about managing my dysautonomia in public.

Thank you in advance!

~ Broken_Shell

Hi Ricky,

First of all, let me just tell you that you are a wonderful and caring husband for standing by your wife and continuing to advocate for her. Any medical condition can put a huge strain on a relationship, especially when it is something as continuous and unpredictable as dysautonomia.

I don't have much to offer in the way of advice, but here are a few thoughts that you can share with your wife...

You mentioned that her symptoms worsen with changes in the menstrual cycle. It is ironic that you bring this up because just this morning I was thinking about starting a post about this very topic on the forum. I think that many of the women on this forum are in the same situation. Right now I am in the process of investigating different types of hormone replacement to try and "shut off" my own menstrual cycle and keep my hormone levels stable. I am hoping this will stabilize some of my symptoms. Has your wife ever tried going on a continuous birth control pill to keep her hormone levels from fluctuating? If your wife needs to see a silver lining here, perhaps this will help. Twice I was hospitalized during my menstrual period and even though it was annoying, I thought that at least on the positive side, I was hooked up to an IV and getting continuous fluids, which theoretically should help counteract some of the strain put on my body by losing blood.

Depending on what works out in the hospital, it may be worth consulting an endocrinologist if you are still concerned about the cortisol levels. When was the level of 4 drawn? This is a normal value if it was drawn late in the day. Also, the stress of hospitalization is likely elevating your wife's cortisol levels, so the hospital isn't the best place to assess this.

You mentioned that your wife has been on Toprol XL. Is she currently on any other medications? Has she tried anything else in the past other than the Midodrine and Florinef?

Please keep us posted on your wife's status and let her know that those of us on the forum are praying for her. I am glad that the doctors are keeping her as an inpatient and trying to come up with a better plan rather than just brushing her off and sending her back home.

What area of the country as you in? Are there any "autonomic specialists" that could be called in to consult?

Best wishes, Broken_Shell

Hello,

The only way I felt comfortable trying the new clonazepam was cutting it down to a small fraction of a dose since I am so sensitive to medications. I took 1/8 of a 0.5 mg tablet. I did feel a little "out of it", but nothing really bad happened I think that it has the potential to be helpful, either in a small daily dose in the morning when my symptoms are at their worst or in larger doses as needed. I am going to keep trying it, but I want to be careful not to take it too many days in a row until I get a good feel for whether or not it will really decrease my symptoms since your body can be dependent on it within a week of taking it on a regular basis. I am also trying out a couple of different medications, and want to be sure that I space them out enough to know what is helping or causing what. If anyone is interested in knowing more about how things go with the clonazepam, PM me and I'd be happy to share my experiences once I've gotten in a few more doses and a good idea of how it is working for me. I also see my neurologist this week, as well as the endocrinologist and gastroenterologist, because my symptoms have changed (become more severe and added new symptoms) in the last few months, so perhaps they will have some other suggestions for me. On Friday I read through the archives about benzos on the forum, and it seems that they have been helpful to many other people, so I am feeling positive

~ Broken_Shell

Hi Desperate Mom,

My heart sunk when I read the subject of your post. I pray that a bed becomes available soon and that the doctors and rehab therapists are able to help your daughter start to get back on her feet again. You are a wonderful mom and remind me of my own mother, who has taken me to countless doctors and tests and loving takes care of me and will never let me give up! Trust me, even if she can't express it, your daughter knows how much you love her and appreciates that you will not stop fighting for her even when she herself is too weak to fight.

I want to reinforce what others have said about the meds. Those types of medications are dangerous if you stop them without tappering them. If she is not having a positive response to the new Wellbutrin (as I'm sure you know, it takes 6-8 weeks for these medications to have positive effects), perhaps now is not the best time to change to a medication like that. Was she tolerating the Cymbalta ok, even if she was not getting the benefit from it that the doctor was hoping for? Perhaps you should talk with him about that. It sounds like her body is very weak right now and likely to be unable to tolerate anything. Starting a new medication like Wellbutrin can be very rough for anyone and might go better if you attempt it again once her body is a little bit physically stronger and more stable.

That being said, I just wanted to also say that I hope her healthcare providers recognize that her depression is very understable, and that her outlook will likely improve on its own if she can get feeling a little better. I know that when I have rare days of decreased symptoms, I am amazed at how big of a difference it makes on my outlook and motivation to keep fighting the dysautonomia and find a way to make all of my days a little better.

You and your daughter are in my thoughts and prayers. Please keep us posted and how she is doing.

~ Broken_Shell

Hoping sandy or any with med info may be calling in....

my daughter has been having awful trouble with nutrition, we noticed (and posted) that when she has anything with sugars her tachy is worse and she feels like sh*t..it is also carb based aswell... sooo have asked yet again for a gtt test with the insulin draws...no one wants to know, but I am not giving in...and getting louder....

decided to do some hopme testing...

todays home test results were starting from a baseline a.m of 4.1 jumped around the day between 7.6 and 8.2 then shot up to 16.4 then within half an hour down to 7.4 then 6.2 and last one 5.0

just before the 16.4 she had an orange...could this do that..???. are these normal...??? seems a bit freaky to me..

she is eating mainly protein and veg and nuts...cut out the sugar, following low gi regime and no dairy...

her bp during the day was reasonably stable, her resting hr was around 58-81...she usually hovers around the 60-70 mark...

any one any input as to normality...

Hi,

I can't comment on the insulin values because "normal" values would be dependent on the lab's assay, methods, and timing of the samples. I do have a question though...

Does your daughter have a blood sugar monitor to see if her symptoms correlate with hypoglycemia or rapid fluctuations in blood sugar?

Maybe if you record blood sugar values and her diet and take that to the endocrinologist then they will order the test. Perhaps another endocrinologist would order the test? Have you tried more than one? Her symptoms certainely seem to warrant looking into. Good luck!

~ Broken_Shell

Hello.

I know that there are a lot of posts about clonazepam, but I am trying it new tomorrow and I am scared because I have had many bad reactions to medications. For those of you who have had either good or bad experiences, can you please respond and let me know about....

Whether or not it helped you?

What symptoms did it help?

Do you take it on a regular basis or as needed?

What side effects have you had from it?

How long have you been taking it?

Thank you SO much. I really appreciate the support!

~ Broken_Shell

Hello.

I don't know what causes the "internal heat" symptom, but I have also experienced it. I used to say that it felt like my insides were cooking. I feel like there is heat radiating from my body cavity. I also do not sweat at all in response to being warm; being outdoors in the warmth or even in a warm room or in the kitchen when there is a burner on makes me feel woozy and like I am going to pass out. I only get cold and sweaty in association with other autonomic symptoms, but never sweat when I normally would have before getting dysautonomia. I don't have much to offer in terms of understanding or treating this symptom, but I wanted you to know that I know what you are talking about. I don't experience coughing related with it though. The only thing that sometimes helps me is holding an icepack to my core body, usually my abdomen when I get this feeling. Hang in there all!

~ Broken_Shell

Hi!

I am wondering the same thing. I have seen numerous endocrinologists and non of them really addressed this beyond checking cortisol levels. I see my endocrine doctor next week, and I think I'll bring it up as it relates to my symptoms. If anyone else knows the answer to this question, please reply.

Thank you!

~ Broken_Shell

Hello,

I wanted to make one more post regarding using kinesiotape on the thoracic spine to reduce symptoms of dysautonomia. I wanted to double check the specifics with my PT before posting this. Here is the recommendation...

Place the tape directly on the spine beginning at the level of T12. Curl forward so that your spine is rounded. Run the tape up to the level of T1.

Ofcourse you will need someone to do this for you. They should be sure to follow the directions for skin prep and applying kinesiotape that come with the product. It's usefulness is based on sending inhibitory signals to the sympathetic autonomic nerves that emerge through the thoracic spine levels.

If anyone tries this and has success with it please let me know. I do plan to try it myself.

Good Luck, Broken_Shell

Hey, thanks for the heads-up on the kinesiotape. I'll definitely ask her about it the next time. She's also done the craniosacral stuff on me in the past and it feels so good... I'm thankful that my insurance is paying right now. When I asked my PCP for the PT script I told her my reason was lumbar and thoracic pain, which it is. We're just thinking the reduction in sympathetic symptoms is a side benefit!

Unfortunately, I'm pooling more than ever right now and the skin pain kept me up most of the night...

Sounds like it's worth an ask. If your PT does craniosacral and myofascial work, then she might be familiar with it. Although they have to complete specialized training to use kinesiotape, maybe she could look into it for you if she doesn't currently use it. Good luck. Let me know if anything works out with it for you.

~ Broken_Shell

Bluesman,

One more thought... Lexapro comes in a 5 mg tablet and an oral solution. You might tolerate it better if you start with a lower dose and very gradually work your way up. Trying something as small as a half of a 5 mg tablet or a small amount of the oral solution might agree with your system better. That's the nice thing with the oral solution... there is only 1 mg in 1 mL of solution (1/5 teaspoon), so you can really start at a small dose. If you talk to your doctor about what is going on, he might be willing to change your prescription. Otherwise, a pill cutter from the drug store can be used to cut the 10 mg tablets that you already have so that those don't get wasted and you spend more money on a whole new prescription order. Good luck!

~ Broken_Shell

Hi Bluesman,

Thank you for sharing your experiences. What I can say right now is "hang in there". Unfortunately, what you are experiencing with the Lexapro is completely expected - those sorts of medications usually cause a bizarre array of side effects for four to six weeks before you can begin to see a benefit from them. Anxiety, headaches, and GI distress are common. That is exactly the reason why I have been very hesitant to try them, so I take my hat off to you for trying several of them. I feel as though I already feel so poorly every day and can barely manage that I cannot imagine adding a whole other list of symptoms on top of what I already have for over a month when I might not even see any benefit from it when that time is up. I do not suffer from depression or anxiety, but my neurologist and pain doctor have both offered these types of medications to treat my autonomic dysfunction and myofascial problems. I have had several scary and extreme reactions to medications in the past which has made me even more fearful of new medications. The ironic part is that my professional training is in pharmacy, but when it comes to me being the patient, all of that kind of goes out the window! Anyways, I hope that the Lexapro will at least be a positive trial and help with some of your symptoms. Keep us posted and take care!

~ Broken_Shell

Hi All,

Wow! Very interesting... I have been seeing a PT for over a year and a half now who does craniosacral and Upledger myofascial work. Insurance stopped paying long ago, and I had to switch to private pay which has been a financial strain, but I feel worth it for now. She is treating my myofascial pain (especially neck and shoulders), headaches, TMJ, and autonomic symptoms. She has also talked to me about the sympathetic nervous system connection with restrictions in the T-spine. I usually feel better after my PT sessions, but unfortunately the gains don't last very long. That being said, the work she does seems to make a positive difference on my pain and autonomic symptoms and those little moments of "somewhat better" are priceless! The craniosacral work also seems to help quite a bit with what I can "spatial disorientation." (Feeling like the floor and my body are moving in all directions - kind of like trying to balance on a ball). One thing that I can throw out there that has helped me has been the use of kinesiotape. It decreases the pain and spasms/tightness in my traps, SCMs, and other muscles immensely - I literally cannot tolerate being without it on my SCMs for more than 24 hours without a big flair in my symptoms. Furthermore, my PT has mentioned (but I have not tried it yet) putting a strip of the kinesiotape over the T-spine in an attempt to decrease some of my autonomic symptoms. She said it can also have this effect, although to a lessen extent, when place across the soles of the feet. I have tried putting it on the soles of my feet, and have noticed a small difference, depending on what and how bad my symptoms are. (Apparently it has some effect by re-directing the nervous system to the stimulation on the numerous proprioreceptors on the soles of the feet). I wanted to mention looking into this because some of you mentioned that the work on your thoracic spine was helpful but short lived. It might be worth a try if you want to look at the kinesiotape website (although it does not make mention of using the tape for this purpose) it's www.kinesiotaping.com. Just a thought. Some of you might be familiar with the kinesiotape because it became more popular after the 2008 Olympics... it's helpful for neuromuscular re-education, acute and chronic pain, and promoting lymphatic drainage. I'm sure everyone responds differently, but it has been a wonderful addition to the tools I have to address my symptoms (mainly muscular symptoms vs. symptoms of dysautonomia, although it does help decrease my dizzniess and wooziness some). Anyways, those of you who have had success with PT, I wish you continued positive gains. Any modality that helps even a little is certainely worth pursuit!

~ Broken_Shell

Thank you for saying hello. I am new to the forum, and I know that when days are bad it is hard to focus on something beyond surviving! I hope that your body gives you a little break soon.

~ Broken_Shell

Hi Ruekat,

Welcome to the DINET forum. I hope that you will find helpful advice and support here. I don't have experiences with either of the medications you are asking about. Have you seen an "autonomic specialist"? I ask because many doctors are not familiar with dysautonomia, so someone with experience treating patients with our condition may be in a better place to recommend medications to treat your symptoms. Good luck as you begin your journey here, and remember to listen to your body and take it one day at a time!

~ Broken_Shell

Hi,

I am wondering if anyone would be willing to share their experiences with using anti-depressants or anti-anxiety medications to treat their dysautonomia. I have read some things stating that these types of medications can help to "reset" the autonomic nervous system and reduce symptom flairs, but with my sensitivity to medications and the types of side effects associated with these medications I am scared to try them. Thank you in advance for sharing your experiences.

~ Broken_Shell

Anti-depressants - not for me Had headaches, gained weight, felt terrible.

Klonopin 1/2 of a .5 mg pill - I take nightly. It is the only pill on which I noticed an improvement. After all these months, I'm not sure what it's doing now, but my neuro said to stay on it.

Can I ask in which symptoms you saw improvement? Thank you!

Hi,

I am wondering if anyone would be willing to share their experiences with using anti-depressants or anti-anxiety medications to treat their dysautonomia. I have read some things stating that these types of medications can help to "reset" the autonomic nervous system and reduce symptom flairs, but with my sensitivity to medications and the types of side effects associated with these medications I am scared to try them. Thank you in advance for sharing your experiences.

~ Broken_Shell

Hi Desperate Mom,

Have you had any success getting your daughter into the hospital? I couldn't help but think of her when I went to bed last night. Like everyone on this forum, I really wish that I could offer something to help. This is what I could come up with?

1. Do all of your daughter?s doctors know about her kidney condition? If her kidney function is reduced, she may be getting toxic from some of the medications she is on and need to have their doses reduced to account for her loss of kidney function.

2. Someone else suggested Mestinon as a drug that you did not mention on her list. I agree that it may be an option, and I also did not see Reglan (metoclopramide) on the list, which could also help with the nausea.

3. If she is having a difficult time with solid food, have you tried liquid nutrition like Boost and Ensure?

4. What medications is she currently on for pain?

5. Have you tried acupuncture or Eastern medicine as an alternative? What about alternative physical therapy or healing modalities?

6. Another thing that might be worth trying for the nausea are Sea Bands wristbands. You can buy them at any Walgreens.

I hope that you find something here helpful. Keep us posted on how she's doing. Remember to take it minute by minute, and let her know that you realize how hard she has fought for several years and that you will continue searching for answers and not give up hope.

Regards, Broken_Shell

Dear Desperate Mom,

One more thought.... can her doctor get her on TPN or a feeding tube to help get something in her despite the vomiting to help her get some of her strength back?

Have you talked to the doctor today? Are they on call this evening? I hope you can get a hold of them.

Prayers and Hugs ~ Broken_Shell