Frustrated: More questions than answers - Page 5

Naeco · 09-21-2009, 04:26 PM

awieleba, I had never heard of a myoclonic jerk but when I looked it up, it described exactly what I was talking about. It's interesting because it mentioned that it can be related to seizures (among other things) because about a year ago I was tested for something the neuro Dr. called "silent seizures" because of my short term memory problems but it was later diagnosed as dementia after the tests came back clean. It seems like everytime I look up a new symptom, it's related to any number of other neurological disorders. I hope we're all in good hands with the doctors that we're seeing. There's so many pieces to the puzzle.

Naeco · 09-22-2009, 09:32 PM

I had to get my medical records for an appointment outside of the Mayo and found the MRI on my head and spine came back clean. Hopefully that eliminates MS from the list. There wasn't anything obvious that I could make out of the other test results. I meet with the Neuro next week.

katmomma · 09-22-2009, 11:22 PM

Naeco,
I thought you just went through your most recent testing and had a clean emg. Is this just a follow up with the neuro or are they doing more testing?

Naeco · 09-23-2009, 01:14 AM

Hi katmomma,
I did have a clean EMG. However, since that time, my referring doctor scheduled this latest round of testing to go along with my Neuro consult for next week. The doctor that did the EMG is different from the one that I'm meeting with next week. I'm not sure if I'm making this sound more confusing than it needs to be but unfortunately things haven't been that clear to me either.

Anastasia · 09-23-2009, 09:19 AM

Sorry youve had a negative experience with your doctor John. That cant feel too great when you are fearfully searching for some very important answers re yur health issues.
Our ED has had a need to change doctors before finding his diagnoses, so we can relate a little.
Still fairly on in the illness for him as far as I can gather, so I am not about to spout forth with knowledge, however we wish you well and I guess , if need be, you do have the right to get a doc who is a little more approachable, realistic, what ever the right word is.
Mean while ,go well, take care and we wish you well, Anastasia.

connieS · 09-23-2009, 11:48 PM

Hi John,

Your case sounds very similar to mine, as in the way doctors treated u. Lol. I was on my own for close to a year, struggling with new symptoms as months went on. One doctor also sent me to a psychiatrist and psychologist after 2 clean emgs, even though I had hyper reflexes and weakness. But both said I did not have mood or stress symptoms, and my symptoms were not caused by anything psychological. As months went on without a diagnosis, I started to doubt myself even though the both pschologist and psychiatrist said I had no issues. It was only when my friends encouraged me to go overseas to seek a 2nd opinion, which I did, and that was when I got my possible diagnosis of ALS. It was also during these times when my emgs turned dirty, and my reflexes got extremely hyper and also positive for babinski, plantar, hoffmans etc.

When I returned home after a month, I simply waitd to see what would happen, and only saw another local neuro 2 mths later when the cramps started getting really bad, and my limbs stiff. The local neuro did all the tests, looked at the results which I brought from overseas hospital, and said, its defiinitely MND. He said he was surprised I was even sent to a psychologist in the first place, and told me that if any other doctors were to suggest sending me to one in the future because of these symptoms, I should tell them to go see the psychologist themselves, and quote him. Haha. I was thankful for his remarks, and he also referred me to another neuro for a 2nd opinion as well as to evaluate treatment options. He admitted it was a shame to local neuros, and a shame that I was so young. He had tears in his eyes when I left.

It sounds weird but I was more than relieved actually when I got my diagnosis, as I finally know what I was fighting against. With or without diagnosis however, I still went ard to do the things I needed to do. I totally understand your anxiety and frustration, not knowing what is going to come next. One thing I found helpful then was just to take each day as it comes, document my symptoms, and search around for a good neuro so I could show him all that when i find him. Its journey, waiting and searching for answers, but do your best not to stress yourself out, and enjoy each day.

SandraD · 09-24-2009, 08:50 AM

Hi Connie-

I was very sorry to hear about your diagnosis, but you seem very level-headed and positive and as people on here have said, I think that will be very helpful to you. I have to say, your story frightens me. I, too, have had a clean EMG and a neurologist who initially suggested stress and anxiety as an explanation for my symptoms, but did not go so far as suggesting a psychiatrist. I wonder if women hear this more often from male doctors than do men--- there's a whole history in the medical profession of writing women's symptoms off as "hysteria." I have to say, though, that my neurologist said in the next breath that he could not completely rule out a neuro condition that has not yet fully made itself clear. but the second time I saw him, he asked me straightaway if I was feeling depressed and if I had any thoughts of killing myself!! Hello- I have a two year old at home! The neuro also had no explanation for the muscle loss in my hands and forearms (at the time, one arm), except to say "well, I don't know what they looked like before that." I said, "well, I do, and it did not look like this." It does appear to be mild atrophy at this point, but still.

An ex-boyfriend of mine went to medical school and I visited him there (in another state) several times before we split up. I remember thinking that many of his classmates were pompous jerks and I could not understand why they had chosen a profession dedicated to helping people. so many seemed to lack warmth and people skills, but they were brilliant. I guess that's the tradeoff sometimes. Too bad your local neuros were not brilliant enough to figure it out, though, in addition to being insensitive.

anyway, my symptoms slowly march forward: increasing stiffness in my legs and neck, quivering around my lips, difficulty opening things, off and on pain in limbs, neck spasms, and sometimes, saliva building up in my mouth. Maybe it is ALS, maybe not. HOPEFULLY NOT. But I know one thing. It is SOMETHING.

Today I am being sent to a rheumatologist to explore that angle and then next week I am going to a large hospital in the city to get a second neuro opinion. I wonder if they will repeat the EMG at this point.

well, this posting is too long (sorry), but I did want to say "hang in there" to those of us who continue to search for answers and give another big hug to Connie and others on here who have been recently diagnosed. Connie, I hope that you have lots of support and receive the best care possible. Many people are thinking of you.

take care, all--

Sandra

Naeco · 09-24-2009, 05:40 PM

Connie, thank you for sharing your story. It sounds like you're handling this extremely well. You must have great strength. My prayers go out to you!

I'm starting to get worried about needing another EMG. All the doctors that I've talked with during the rule out phase have said it's "most likely neurological" because all the tests are showing abnormal results but they turn up negative for the what the test was originally intended for. I also talked with some of the diabetes specialists at the Mayo and they said my gastroparesis diagnosis is VERY unlikely to be related to my diabetes and is more likely that it's related to the Neurological issues that I'm experiencing. Although, with all that said, they still scheduled me to see a pschologist on the same day as the Neurologist. I guess if they can't find anything physically wrong with me they might start to think I'm crazy. I guess if they can't find anything, I might start to wonder the same thing myself. Whatever this thing is, it's basically put my life on hold for the moment.

Naeco · 09-28-2009, 08:55 PM

Hi Gang, just wanted to let you guys know that my Neuro ruled out any type of Neuro-Muscular disorder or Myopathy as the cause of my symptoms. My doctors believe that hyperparathyroidism has caused many, if not all, of the symptoms that I've been experiencing. The para thyroid regulates the calcium levels in the body and, when the levels get out of whack, they can produce some very similar symptoms to ALS. I hope the info below might be hepeful to some of you. It seemed like a mimic for MND's that I haven't seen posted in the past. My doctor said the calcium level doesn't necessarily correlate with the severityh of the symptoms. If your calcium level is out of range, you might want to mention this avenue to you doctor because apparently it can be overlooked. Believe me, I see endocrinologists for my diabetes all the time and none of the have picked up on this until now. Hope you might find this info helpful. Wishing you all the best!!

http://en.wikipedia.org/wiki/Hyperparathyroidism
Symptomatic hyperparathyroidism
Of those patients who do present with symptoms, they are commonly associated with the effects of an increased level of calcium. Since calcium is involved in trans-synaptic communication in the nervous system, high blood calcium levels have a direct effect on the nervous system. Thus, most of the symptoms of parathyroid disease are "neurological" in origin. Common manifestations of hyperparathyroidism include weakness and fatigue, depression, aches and pains, decreased appetite, feelings of nausea and vomiting, constipation, polyuria, polydipsia, cognitive impairment, kidney stones and osteoporosis.[3]Surgical removal of a parathyroid tumor will eliminate the symptoms in most patients.

joelc · 09-28-2009, 09:13 PM

What you just described, apart from increased calcium levels, is Hypothyroidism.
I did not find that definition anywhere in your link.

Here are the symptoms for Hypothyroidism:

In adults, hypothyroidism is associated with the following symptoms:[5][7][8]
[edit] Early symptoms

* Poor muscle tone (muscle hypotonia)
* Fatigue
* Cold intolerance, increased sensitivity to cold
* Depression
* Muscle cramps and joint pain
* Carpal Tunnel Syndrome
* Goiter
* Thin, brittle fingernails
* Thin, brittle hair
* Paleness
* Decreased sweating
* Dry, itchy skin
* Weight gain and water retention[9][10][11]
* Bradycardia (low heart rate – less than sixty beats per minute)
* Constipation

[edit] Late symptoms

* Slow speech and a hoarse, breaking voice – deepening of the voice can also be noticed
* Dry puffy skin, especially on the face
* Thinning of the outer third of the eyebrows (sign of Hertoghe)
* Abnormal menstrual cycles
* Low basal body temperature

Naeco · 09-28-2009, 09:39 PM

Hi Joel, it should be in that link - I copied it directly from that site. The parathyroid is separate from the thyroid. It's only role from what I've been told is to regulate calcium levels. The high calcium levels are what have apparently interfered with the nervous system (at least in my case).

crystalkk · 09-28-2009, 09:57 PM

Naeco-
That's great that they found the problem and it can be treated....what is the plan of action now.

BarryG · 09-28-2009, 10:20 PM

Hi Gang, just wanted to let you guys know that my Neuro ruled out any type of Neuro-Muscular disorder or Myopathy as the cause of my symptoms.

That is just fabulous news Naeco, I don't think that there is much else to say except congratulations! It is so great that they found out what was wrong and I hope that you get fixed up soon.

Zaphoon · 09-28-2009, 11:30 PM

Joel, my wife's thyroid was hyper and the doctor shot and killed it with radioactive iodine. Now, thanks to a dead thyroid, she has all of the symptoms you've listed above for being hypo. She was just told today that her thyroid is dead when she had been led to believe it was now just underactive. Very, very bad!

Because she was told it was under active but still active, she was taking supplements to stimulate production. Of course, you can't have much success stimulating something that is dead. So, now she is going back on thyroid medication.

Doctors should not be allowed to administer radioactive iodine!

Zaphoon

Naeco · 09-29-2009, 04:15 AM

Thanks guys! This is still coming as a shock to me because I was certain that my problems were neurological. I'm still trying to get my head wrapped around this one. But your right, this is extremely good news, considering the circumstances.

crystalkk, I have an appt with a new Endochrinologist in a couple weeks and they'll probably recommend surgery to remove the problematic glands. Hopefully it hasn't affected all of them yet.

Thanks
John