Can I vent?

[flutterbee]

The neurologist made a comment to me and the more I think about it, the more annoyed I get.

He said that if everything comes back ok from the rheumy then they are really going to be scratching their heads. After he spent 20-30 minutes with me.

I mean, come on. My symptoms are not all that unusual. If *I*, a lay person, can do research and find things that fit why in the hell would they be scratching their heads? I know that there is a difference between looking up symptoms, etc online and applying it to real life, but still. I'm an intelligent person. I don't just look up symptoms. If I see something that I can relate to I research the heck out of it - symptoms, progression, real life experiences. I don't say, oh..that fits and then be done with it.

I'm having balance issues and my cerebellum (the portion of the brain that control balance) has shrunk. He tells me this and then says, I'm not sure why.

My balance issues are mostly on my left side. My nerve issues are on the left side. My eye issues have been with my left eye. Coincidence? I don't think so. Do they give you time to get that all out? No.

The thing is, if you go into these specialists and say this is what I think I have, they completely blow you off. So, you have to play their little game, let them scratch their heads and wait. In the meantime, my life is on hold and my symptoms worsen.

I want answers. Yesterday. I've been playing this little game for way too long.

 

[mrscatinthehat]

I am so sorry you are going through this. Wish I could find that magic wand and make it better. But since I can't I will send hugs and happy thoughts that the doctors will get ther proberbial thumbs out of their rears.

Hugs

Beth

 

[goldenguru]

Heather -

Have you considered a trip to Mayo or Cleveland clinic?

I really believe in Mayo - seems to me that you get a much better and thorough evaluation by a team of docs. If I was having chronic, unexplained issues - I'd be on a bus to Minnesota.

Just a thought.

 

[Josie]

I know exactly what you mean. I've run into this problem, too, as you know. I am not shy, though, about telling them what I think it is.

Let's hope that when he said they would be scratching their heads, he meant they would still be trying to figure it out. Maybe then you can tell him what you think it is and he will do his own research. If not, keep going to different doctors and someone will figure it out.

husband had a rare condition which caused him to start growing. The first noticeable symptom was his teeth were out of alignment. He tried to figure out why his teeth were messed up for a couple of years before someone he saw had heard of this condition. He started off at the dentist and ended up at an endocrinologist.

If you are having eye problems, maybe the opthamologist or an optometrist could help solve the whole thing.

 

[Marcie Mac]

Am sorry Heather - I deal with the "doctor has not got a clue" syndrome with my SO. I just wanna curl up in a ball every time we have to see a new one for something that has popped up because I know I am going to hear "hmmmmmmmm" and they will do the head scratching thing again.

We have been told to call the Mayo Clinic as well (the one in Arizona)and see what we can do to get him in. Its hard when you have medi cal in Ca. to get doctor appts in AZ. And why is it necessary to have to DRIVE or FLY to another state to get to the top notch experts who seem to, without fail, have the answers.

I have always thought that doctor diploma's should come with grading certificates like they do in restaurants. You see the license up there on the wall, and have no clue if they graduated at the top of their class, or barely eaked thru with a D-

We were sent to a research specialist at UCLA who ended up giving SO some new drug. I looked at it when we got home, and it clearly had some strong warnings on do not take this "if" and he had more than his share of listed "if"s. Even his regular doctor when I had run up to his office to show him because I would surely not let him even start this regime said what is wrong with this guy, SO can't do this kind of medications without being in a hospital setting - it may kill him..sigh..and this doctor was the one that made the referral in the first place.

Doctors don't seem to want you to work as a part of their team and do any research on your own - they always seem to get their knickers in a twist when you ask them to write that down because you want to research it on the internet.

Where is House when you need him..

Marcie

 

[Hound dog]

Heather

I'm not trying to scare you or anything. I'm just tossing out an idea and what you said caused to pop into my head.

<div class="ubbcode-block"><div class="ubbcode-header">Quote:</div><div class="ubbcode-body">My balance issues are mostly on my left side. My nerve issues are on the left side. My eye issues have been with my left eye. </div></div>

Is it possible you've had a small stroke? I know you've had an MRI, but in young people this is not what they're looking for. So I don't know if your neuro was having them look for this or not. But your symptoms are Travis in reverse. His is on his right side.

Neuro is stumped maybe because of your age? You'd be young for a stroke. That was the problem we had with Travis. The neuros kept coming up with excuses for his symptoms becasue he was simply too young. (oh, no! It just couldn't be that!) Until he had one that was major enough to cause profound facial droop on the right side. THEN they sat up and took notice. (and I'd found a neuro worth a darn)

Like I said, I'm not trying to scare you. This might be completely off track. But when I read what you said, read in your sig about the heart disease, well- that's what popped into my head.

We went thru like 6 neuros before we found someone to listen and take action. Although Travis has had a series of strokes, none have really shown up on the MRI because of previous brain damage due to a massive sroke/heart failure at birth. Frustrating. But it did lead to me telling neuro about how anyone who has ever drawn the boys blood said that it was so thick it made drawling it really hard. doctor put 2 and 2 together, did the testing, and we discovered Travis has the polycythemia. Polycythemia can cause a person's blood to become so thick it's easy to clot, thus causing strokes. We had our answer.

Answers can sometimes come from asking the most innocent off the wall questions.

Hopefully the rhuemo will be able to find some answers, or maybe pose some questions that will lead to the answers.

I don't blame you for being frustrated.

Hugs

 

[flutterbee]

Well, my neurologist fellowed at the Mayo Clinic in Minnesota, so I thought that was pretty good.

Lisa - My regular doctor was worried about stroke which is why she ordered the MRI and scheduled me with a neurologist. However, the eye issues, balance issues and nerve issues have been a coming and going thing for a few years. If they were constant, I'd be inclined to be more suspicious of stroke. They are worse with fatigue and pain - same as my cognitive issues - but some days they are not even there. Because of my increased risk of stroke now, they have scheduled an ultrasound of the carotid arteries. That's scheduled for 1/30.

I'm seeing my regular doctor Monday for a urinalysis. The frequency and urgency has increased and I want to rule out a bladder infection since I have a history of kidney infections. I don't think it's a bladder infection - it doesn't feel like one really - I think it's another symptom, but I want to make sure. I'm going to talk to her about my concerns, lay everything out more clearly (complete that report like susiestar suggested) and see what she has to say.

I'm just tired of it. The tingling/numbness in my fingers had been getting better, but last night I could have driven a nail through my fingers and wouldn't have felt it. Then today, a lot of pain in my neck and back again, which of course causes headaches and a very crabby Mom.

Sigh. Just frustrated.

 

[Lothlorien]

I'm sure you've gone through this before, but most of the tests are inconclusive. You really need to pursue more definitive testing of Lyme's disease. Generally, the spinal tap is the only conclusive way of testing and that even comes back negative too. I would really encourage you to have the tests done, especially when you are symptomatic.

 

[flutterbee]

Actually, Loth, that's what's so sad. No tests. None.

I tell the doctor I'm having tingling in my foot and vertigo and they say, 'That's strange.' I tell the doctor I can barely climb the stairs and they say, 'You're just going to have to learn to deal with it.' I tell them I'm having incredible pain and burning in my hip and lower back that makes it hard to stand let alone walk, doctor moves my leg and says, 'Bursitis' and does nothing. I tell them I can't remember anything and get lost in my own neighborhood and doctor says it's stress. I told the neurologist that 2 weeks after my second heart cath, I had very disconcerting symptoms - body felt like lead, could barely walk (felt like I was walking through molasses), couldn't focus, words coming out in the wrong order and couldn't fix it - he said, 'I don't know what to make of that.'

Other than blood work I haven't had a single solitary test until I had the heart attack. Then they stopped at that. It wasn't until I got my new doctor that anything is being looked into.

I'm waiting for the rheumy appointment. If they don't determine anything, I'm pushing for a neck and spine MRI (WITH contrast as the brain MRI was with-o contrast) and a spinal tap. If it's not rheumatic causing secondary neuropathy, then we need to look into MS and Lyme.

 

[Josie]

If you do the Lyme testing, make sure it is from a specialty lab. I used IGeneX but I think there are one or two others. I ordered the test from IGeneX and took it to the doctor but he had to order it.

From what I understand (and I am far from an expert so far), the Western Blot test is pretty good. I don't think any of them are definitive. The Western Blot test shows different bands of antibodies as its result. LLMD's (Lyme Literate MD's) will treat for Lyme if there are symptoms and/or if there is one postive band on the Western Blot test. It takes a lot more than one band for most doctors to call it positive. If you do the test, make sure you get the results so you can see for yourself what if any bands are positive.

I was lucky to get my daughter into an LLMD in 2 weeks. A lot of times, it takes longer, I think. You might want to make an appointment, even if you end up cancelling it, just in case.

I think if you really want to rule out Lyme disease, you should go to an LLMD, even if you do the IGeneX test and it is negative. I think the other doctors are too quick about ruling it out. I think the LLLMD's also look for other causes of symptoms before diagnosis'ing Lyme if the test results are negative. So one of them might be able to get you an answer even if it isn't Lyme.

 

[totoro]

Obviously, you are just one of those pushy patients that thinks they can self diagnosis, and that they know more than the Doctor... You should just be quiet like a good little patient and let them do their job...

Suffer along... and they will figure it when they are good and ready! They have so many more important things to do!!!
My gosh Heather... as if you were important... or should feel that way!!!

Hey, I have Gift Certificates!!!
I would make you feel important!!! Road Trip!!! You and all of the other ladies can hook up on the drive out her!!! The North Idaho getaway!!!

Hugs.... Sorry