Hi! A Vent, Update, And Questions

[ajw4790]

Hi everyone!!!

I haven't written/responded a lot recently due to being busy and semi-fed up with all things medical (I think many of ya'll know what I mean ). But, I had some questions etc. so I thought I would post. Hopefully later I will be able to go back through to respond to others, there have been many interesting posts etc. I am thinking about trying the tumeric! Sounds interesting!

Question: Does anyone else always have brisk reflexes during a neurological exam? I do, and have for as long as I remember. It seems to always suprise the neurologists, but I don't think that they see it as a problem or that it means anything. I am not sure that it really means anything either (not worried about it), but I wondered if many of us have brisk reflexes or if it is just good ole' quirky me???

Question: I know I have asked before, but there are more new people, and I am still trying to find answers. Does anyone else have PATCHY hair loss and sensory loss??? Not in the "normal" glove and stocking pattern. Neurologists say it is NOT part of the small fiber neuropathy, and that it is probably endocrine or autoimmune. Endocrinology says that it does not look endocrine and all my tests are normal. I have not seen a rheumy in a while, but FINALLY (I think) have a referral to one. (Man, that was difficult, they do not refer to rheumatology easily here at all!)

When searching online the only thing that I have found that would fit diagnosis wise with the patchy hair loss is hypopituitaryism. I asked endo, and they said that all my tests do not show that. I also saw on Mystery Diagnosis (I know it is not the most accurate source!) a young adult that had many of the same symptoms, fainted, slept all the time, patchy hair loss on legs etc. But, endo. thinks I am crazy when I ask about it. Does anyone have hypopituitaryism? Or anyone know any other causes of this type of patchy hair and sensory loss?

Okay, my rant!!! So, I saw my endo. I have been pretty much told by all other drs. that endo. is my last shot to get answers. So, I really want them to take me seriously and listen, and try to reason out what may be going on. But, instead they (yes, THEY... I see a fellow who is overseen by a resident- so, I have to deal with both! ) When I got referred to this endo. the dr. wrote the referral to investigate hypoglycemia. So, that has been the focus... which is fine, but they won't look at the whole picture. They are super focused on blood sugar, and refuse to pretty much discuss or look at anything else. They have somewhat looked elsewhere, but it was like pulling teeth to do so! So, the last time they tell me that it is my fault and the ball is in my court, because I don't have an extensive log of my blood sugar to either rule it in or out as a problem. So, once they decide whether or not it is a problem, THEN they can look at other things (they say ). Until, then pretty much everything is BS... (blood sugar or ya' know ). They are so linear thinking it is SUPER frustrating, for them it has to be referred for "A", so work on "A", rule "A" in/out, and then move on to "B". I mean do they realize "A" and "B" just might be connected??? To make things more frustrating the thing is my hypoglycemia problems have leveled off and have been pretty non-existant since being on Cymbalta. So, I have NOT been having issues with hypoglycemia. SO, I have not been testing it, because why poke myself when I am not symptomatic??? It puzzles me because most drs. would look at you like you were absolutely NUTS if you continued to "dwell" on blood sugar if you were not symptomatic, they would just brush it off, and say that's great, and move on. I mean why waste time on something that is not an issue right now? I mean, most of the drs. I have ever met, would totally close the hypoglycemia topic and move on, and probably try to do whatever so that they don't have to follow me very close anymore. So, I am annoyed with endo. and do not know what to do?!

I guess where I am at is the did run just a couple of small blood tests, after my constant questioning. So, I need to get those back, and then otherwise I am testing my blood sugar and guess I will have to send them an extensive list of my finger pokes! They don't want to see me for six months, which means I probably won't see them again with everything... (many reasons- one that I may likely not be in town in 6 months, so a great help that is!)

Make things worse... I saw them in their little office looking my direction whispering and laughing! I am glad I could entertain them!

SO... Does anyone in the OHIO area know of a good endo that knows how to look at the pig picture and may even be familiar with dysautonomia? I was thinking that there must be someone at Cleveland Clinic or somewhere.

I guess to sum it up... I am frustrated. Feel like I didn't get anywhere. Not feeling a whole lot better for a while. Feel like I am getting passed off constantly, and feel like a ping-pong ball. Urrrgghhhh!!!

I am sure there is more, but this is already too long!!! Thanks, for reading and I would absolutely appreciate any help that anyone can offer!!!

Thanks!!!!!

[firewatcher]

Oh sweetie, you've found the endos, I mean egos, I mean endos... NEXT time, bring three white doves and some incense and a sharp silver knife...just kidding!

My PCP has told me on repeated occasions that Endocrinology is the "hardest" of the subspecialties and most med students want to forget that stuff as soon as the test is over! Also remember that Endos are VERY USED to seeing the usual: diabetes and thyroid disorders. The other disorders come into that rare, once or twice in a career type thing. You may have to put up with a LOT of ego to get a good one who has seen anything other than diabetics! Put a call into the University hospital's HEAD endocrinologist's office, the nurse is fine. Tell them you want a recommendation for an endo that "likes challenging cases."

Do a PubMed search for hypo-pit disorders and LOOK at WHO wrote the articles the majority of the time. That is who you need to see.

I have some Hypo-pituitary issues (Diabetes Insipidus, maybe hypogonadism.) I also have previous thyroid issues. I've got three docs who suspect that I might have Sheehan's syndrome. That is where the pituitary slowly dies from the trauma of sudden blood loss (or extreme drop in BP) during childbirth. I'd be the first and only case seen because of POTS if it is. There is nothing that can be done to stop it and we won't know till it's dead and a raisin sitting in my brain, then we replace what it used to make.

When you are dealing with the whole endocrine system it gets real complicated, there are so many "axis" and feedback loops, and anything can knock it out of whack! Stress, lack of sleep, time of day, last meal eaten...

I can ask my Minor Deity when I see him in three weeks, the old endos are a pretty tight group. I'll let you know if I get a recommendation.

Jennifer

[babettess]

Hi!

Just wanted to tell you that yes I have brisk reflexes too. I have just recently been diagnosed with POTS but have always had the brisk reflexes.

Babette

[Katja]

I have fairly dramatic, patchy sensory (pain and temperature perception) loss in my feet, around my ankles - I've had this for 7-8 years, at least (I never tried to get it checked out, so I never got an answer). I've mentioned it to my neuro, but he hasn't had a chance to look at it yet. I could let you know, after I see him in a few weeks, what he tells me. by that time, the results from the skin biopsy he ordered, to check for small-fiber neuropathy, should also be back, so we'll know what type I have - from the QSART test, he's already said that I do have autonomic neuropathy. from what reading I've done about small-fiber neuropathy, I seem to recall, however, that sensory loss may be patchy, though I'm not sure - I can let you know if I remember where I read this.

[Katja]

I did find this:

http://www.ncbi.nlm.nih.gov/pubmed/12210380

CLINICAL FEATURES OF SMALL-FIBER NEUROPATHY: Patients typically present with positive sensory symptoms, including tingling, burning, prickling, shooting pain, or aching....Patients may also have negative symptoms, including numbness, ?tightness,? and ?coldness.? Symptoms are usually distal and ?length-dependent,? but they are sometimes patchy or diffuse

I do have the full text pdf - if you're interested, I could maybe email it to you.

[mjan]

-- HUGS TO YOU --

No wonder you are FED UP with MDs..especially ones who are limited in the BIG picture!

Last year I swore off all docs.. except to get my BB filled. Tired of the run around.. the educated guessing..the different diagnoses.

Then my job/insurance changed..and my new PCPs own mother has a very complex case and she referred me to HER neurologist..who happens to specilize in autonomic problems!! What a miracle!! So far.. so good. He not only knew right away that I have an autonomic disoder but suspects at least an autoimmune disorder and Narcolepsy with cataplexy.

I do not have brisk reflexes..not even sure what that is exactly. Perhaps..they were NOT laughing at YOU..but ya never know. Remember..its all coming back to them..they will get "theirs"...

I had a ER doc immitate me in front lf the whole staff..laugh..not know I could see him. He had no idea that doing his PAIN check..where they press on the bed of your nails to get a response (or not). my ability to FEEL pain was there but slower..and my speech was affected so it took me a few monents to muttle OOOUUUCCCHH. HE thought that was soo funny. I NEVER want to go to an ER again!! ONce they rule out there is nothing life threatening..they just dismiss you. I am still paying for ER visits someone ELSE took me to.

I do FEEL for you.. and sending you healing vibes..and a way to find a compassionate..caring..knowledgeable MD..who ever that is. If you have a good PCP..have them go to bat for you..ok?

Warmly, Jan

[spaceorca]

Hi, I'm new here, but have been reading many of the posts and recognizing so many situations and symptoms. I'm a POTS caregiver/family member: My son Daniel has been sick since he was 15--and he'll be 21 in late May. I'm amazed at how many similarities there are between his condition and ones I've seen here! Just to respond to this post: Daniel definitely has brisk reflexes: the neurologists have commented on this. It means, for example, that his leg kicks up faster and harder than usual when they tap on the knee. This doesn't seem to be a problem in itself, but I think from what the neuros say that it is a symptom of other problems in the nervous system. I.e., the nerves are conducting faster than they should. We see it as a finding that validates--for any doctors who recognize only "objective" findings--that there is something wrong with Daniel's nervous system, even though the things that bother him (like chronic pain, fatigue, POTS itself....) aren't part of the reflexes.

I can also empathize with your story about the endocrinologists. Daniel has lots of endo problems that have finally been diagnosed--diabetes insipidus, adrenal failure, and hypogonadism (very low testosterone, since he's on the male side of the aisle)--but often the endocrinologists were the last to recognize these problems. I remember once when Dan was in the hospital with intestines that had slowed to the point of possible obstruction. He was on the gastroenterology service and one of the GI interns had the idea of testing for adrenal failure. The consulting endocrinologist had a literal fit, arguing with the GI doctors in Dan's room and insisting that this couldn't possibly be a problem; the endo resident even cancelled one of the tests that the GI doctors ordered and for which blood had already been drawn. But the GI docs persisted and, lo and behold, Dan clearly had an adrenal insufficiency. Treating him for that, unfortunately, didn't solve all of his problems but it did help.

I look forward to reading more from everyone on the forum. I've already learned a lot and hope I can contribute to you as well! Debby

[ajw4790]

Hi!

Thank you all for your responses! Welcome to those who I have not said "Welcome" to yet!

Thanks Jenn! Your post was funny! It made me laugh!

Katja,

Thanks for the info! I will have to look at the link! Sounds interesting and like it may pertain to me. I have lost pretty much all the hair on the sides and back of lower leg and just about all of the thigh. But, what confuses the drs. is that I still have hair on my toes.

Lets see... I was going to mention a few other things, what were they? Oh, yeah to add to the nice week I got the card in the mail Fri. telling me that I have been driving on an expired license since Jan 1! Whoops! I didn't know it expired this year. Honestly it has been the furthest thing from my mind. So, I had to pry myself out of bed, to find they close at noon- less than an hour. Rush to get there... Complete that... Had to write check. No money in bank, rush to bank to get money in before check bounces. Bank is in front of grocery store, so decide I need to get my meds and some groceries. So, did all that with minimal fluids, not eating, and not yet taken my meds. Jeez, that was interesting!

I also saw one of my neuros last week that wasn't too bad. I didn't get much help, but I felt for once she kinda listened. Also, she has started to talk about POTS like she now may actually understand it somewhat!!! She was talking about Toledo, papers published, and Dr. Grubb. Before she had no clue, so I actually was impressed. She said she also has another patient with POTS. Other than that she agreed after next weeks testing to try and increase the Cymbalta. She also in her round about way indicated that there MAY be cardiac rehab's in the area familiar with POTS that I may need to look into. So, at least that appmt. wasn't so bad.

I have testing in Cleveland this week. We shall see how that goes!

Thanks everybody!!!

[futurehope]

FWIW when determining the endocrinologist to see, some of them "specialize" in pituitary disorders. You may find it on the write-up of their practice or on the internet, or ask the receptionist when talking to the office on the phone. You might want to see if there are some forums on pituitary/endocrine disorders and get names there.

Best wishes.

[babettess]

Hi!

Thank you all for your responses! Welcome to those who I have not said "Welcome" to yet!

Thanks Jenn! Your post was funny! It made me laugh!

Katja,

Thanks for the info! I will have to look at the link! Sounds interesting and like it may pertain to me. I have lost pretty much all the hair on the sides and back of lower leg and just about all of the thigh. But, what confuses the drs. is that I still have hair on my toes.

Lets see... I was going to mention a few other things, what were they? Oh, yeah to add to the nice week I got the card in the mail Fri. telling me that I have been driving on an expired license since Jan 1! Whoops! I didn't know it expired this year. Honestly it has been the furthest thing from my mind. So, I had to pry myself out of bed, to find they close at noon- less than an hour. Rush to get there... Complete that... Had to write check. No money in bank, rush to bank to get money in before check bounces. Bank is in front of grocery store, so decide I need to get my meds and some groceries. So, did all that with minimal fluids, not eating, and not yet taken my meds. Jeez, that was interesting!

I also saw one of my neuros last week that wasn't too bad. I didn't get much help, but I felt for once she kinda listened. Also, she has started to talk about POTS like she now may actually understand it somewhat!!! She was talking about Toledo, papers published, and Dr. Grubb. Before she had no clue, so I actually was impressed. She said she also has another patient with POTS. Other than that she agreed after next weeks testing to try and increase the Cymbalta. She also in her round about way indicated that there MAY be cardiac rehab's in the area familiar with POTS that I may need to look into. So, at least that appmt. wasn't so bad.

I have testing in Cleveland this week. We shall see how that goes!

Thanks everybody!!!

I go to Cleveland on Monday, March 2. Please let us know how your appt goes. Is it in the syncope clinic?

Thanks,

Babette

[ajw4790]

Hi!

Thanks again for the replies! I like the idea of calling to find a dr that specializes in something non-blood sugar related, so hopefully they have a wider knowledge base (or willing to go outside the diabetes realm).

I did get my endo. blood tests in the mail. It was bare minimum info, but it said that it was all normal. So that is good. I will have to look them over better later, but they looked like they probably actually were normal. (Don't always trust those drs!)

I also want to thank those who have PM'ed me dr. ideas! They have been great! I am always very open and welcome ideas!

I am supposed to be being referred to a Rheumatologist, Dermatologist, and Allergist, but I have not heard anything in regards to actually getting referred to them. I also need to find an new PCP... CRAZY! Then the one dr. was talking cardiac rehab... more appmts! And I still need to go get a couple x-rays... it never ends!!! I am also supposed to be getting in to see Dr. Grubb. Jeez...

mdcountrygirl,

I am not sure what the syncope clinic is? Is that cardio? I see an ANS neurologist at CC. I had my first appmt with him in January and am returning for testing. I am having another TTT (hemodynamic-guess it looks at blood pooling) in the cardio department and then various ANS tests in the ANS lab including another QSART, pupil test, valsalva, etc. I have not seen anyone at CC in cardiology.

Thanks everybody!!!