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Old 05-26-2012, 02:05 AM   #1
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Angry Getting a diagnosis

I have been ill for almost 9 months now.

My symptoms are: tingling legs, muscle weakness and neck pain (after holding my head up for a long time). The main problem is my eyes - I have drooping eyelids, double vision and problems moving my eyeballs/focussing on anything. I also get a high temperature in the afternoon and have lost a lot of weight due to loss of muscles.

I can hardly walk, see or do anything at the moment.

I have had various tests done: MRI of my brain/spine, EEG and nerve conduction studies/EMG - all of which were normal. I had a full blood count which again was normal, except for low IGA (5.1) and low Alkaline Phosphatase.

My neuro has told me not to come and see him again and to go and get phycological help. I started asking him about other tests/illnesses and he told me it was odd for someone who wasn't a doctor to know so much about neuromuscular illnesses.

I know that this isn't in my mind and I am so frustrated. My symptoms are of multiple sclerosis/myasthenia gravis/muscular dystrophy and I don't need to be a doctor to know that. I haven't had a lumber puncture, muscle biopsy or a single-fibre EMG and I'd like to but I just don't know what to do anymore.

I don't know how long it took any of you to get a diagnosis or how you finally got there but some stories or advice would be really helpful. This is my first post so I don't really know how it works but hopefully I'll get some answers!

Thank you

Last edited by zoehommel; 05-26-2012 at 02:20 AM.

 
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Old 05-30-2012, 11:43 AM   #2
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Re: Getting a diagnosis

Find another doctor!

 
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Old 05-31-2012, 01:05 PM   #3
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Re: Getting a diagnosis

I would if I could! I am under 18 and still live with my parents and I am unable to go anywhere myself in this condition. They won't take me to any more doctors as they think that the neurologist I saw was a top neurologist - but he wasn't very good at all.

 
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Old 06-27-2012, 06:08 AM   #4
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Re: Getting a diagnosis

When you say you get a high temperature in the afternoon - do you mean that your body temp is normal during the day and then you get a high temp later in the day - above 100 degrees?

The reason I ask is because my brother had this happen to him and the doctors kept telling him it was the flu - regular blood tests came back normal. It got so bad that they did further testing and found out he had Hodgkins disease.

He had been sick for seven years before he was diagnosed - mostly because my parents did not believe him - and thought he was lazy and that was why he was sleeping so much.

Many people approached my parents and told them of their concerns about my brother's health - to no avail.

The long and short of it is that a high temp that comes on later in the day and goes back to normal the next day is a sign that something is wrong...really wrong.

Please tell your parents that they need to help you find out what is happening to your body. Do not give up - because it is your life - your future -

Do whatever you have to do to get your parents attention, within reason of course - my parents were the same way - if the doctor said my brother was fine then they did not believe my brother - they never questioned the doctors.

My brother died because my parents did not act for seven years when he was showing signs of illness....it is difficult for them to live with themselves - knowing that they could have saved his life....many times over.

Most people do not die from Hodgkins - the cure rate is over 90% (depending on when it is diagnosed)

I will pray for your diagnosis and recovery and that your parents will trust you.
K

 
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Old 06-27-2012, 06:23 AM   #5
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Re: Getting a diagnosis

Thank you so, so much for your reply - I posted this over a month ago and have still got nowhere and am steadily getting worse.

Yes, that is exactly what I mean - my temperature goes up to 38.5C every afternoon and then the next day it's gone right down to 35.5C (not too sure what that is in fahrenheit).

Since I wrote this post I have developed several lumps in my neck, they are not painful but ache constantly and are getting bigger and there are more of them. This lead me to believe, before I even read your reply, that I do have Hodgkins disease. I'm 17 years old and when I told my parents that I thought I had cancer, they actually laughed at me. I know that I am sick and I've told them that they'll be sorry when I die but they just don't take me seriously.

I'm hoping that eventually they'll take me to another doctor when they see me getting even worse, and I get worse every single day - but as you said they think I'm just lazy or tired and have even suggested that I may have Chronic Fatigue Syndrome (despite the fact that I never had a virus and my illness isn't anything like M.E.).

I am terrified of dying as I know that if you leave it too long, Hodgkins becomes untreatable and it's been almost 10 months already.

Thank you again for your reply. It's nice to know I'm not imagining it all or a total hypochondriac!

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Old 06-27-2012, 07:19 AM   #6
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Re: Getting a diagnosis

I am sorry your family isn't supporting you right now! You really do need medical help immediately. Some of your symptoms are definetely suggestive of Myasthenia Gravis. This can be checked out with a blood test for acetycholine receptor antibodies. As an alternative possibility to Hodgkins, this could be systemic lupus, which can cause enlarged lymph nodes, fevers, extreme fatigue, myositis (inflammation and weakness of muscles.) These are both autoimmune diseases and can occur together. Do you have health insurance? If so, I would get a friend or family member to take you to a rheumatologist and a different neurologist. Is there another family member who can help you and try to intervene with your parents on your behalf? A clergyperson? Another possibility is to go to the ER, get some tests done, and tell them the situation at home so they won't just send you home in this state without some answers. All hospitals have to take patients that come in whether they can pay or not. Perhaps you can get some verification that something is wrong that will convince your parents to believe you and help you. Do you have a grandparent who can help you? If you can get to an ER, I would ask Dr. to get a neurologist to come in and see you, as they can give you medicine in the ER to test for Myasthenia Gravis that will show immediately if that is part of the problem (Neostigmine). It is used both as a clinical test for MG and a treatment. Pleasetake care of yourself, even if means your parents getting mad at you. They will come around when you get a diagnosis and get help. Obviously, getting their cooperation and support would be the best scenario. Let us know what happens with your situation!

 
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Old 06-27-2012, 07:39 AM   #7
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Re: Getting a diagnosis

Hi and thank you for your reply. I did have the test done for acetycholine antibodies and it was slightly raised, but the doctor said that it was not high enough to be significant and this was the same with the blood tests for lupus.

I do have health insurance, but it's part of my father's so only he can claim. And I would love to get up and go to ER but I can hardly walk at the moment without assistance. I try and think of a solution everyday and it's great to hear advice from you.

At the moment I don't have their cooperation, and both my grandparents are sick, but I'm hoping this will change soon. This morning, after I had read the post from another member, I read back over some letters from the neurologist and saw that the last letter said 'no significant abnormalities' instead of 'no abnormalities' in my EMG/nerve conduction tests - which I hadn't noticed before.

I then phoned up the hospital that I had the test done at and they have just sent me the report which I have read. The report clearly says that 'surprisingly these test results were not normal'. I didn't really understand the rest of it as the language was very technical but essentially it was a list of all the many abnormalities (f-wave abnormalities etc.) and at the end it said that the clinical findings are indicative of Gullaine Bar Syndrome. I am furious! Hopefully once I show my parents the report they will then let me see another neurologist, as I have said all along that the one that I saw was incompetent and just in it for the money.

Sorry for my long rant and thank you again!

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Old 06-27-2012, 08:09 AM   #8
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Re: Getting a diagnosis

Good for you for getting the actual report. I can't tell you and others how many times I have heard of Drs telling a patient their test result is normal when it clearly is not. I always get my actual test results so I can see for myself. Then, if you see another Dr, you also have the actual report to take with you. When you see the next neurologist, please take all reports of tests you have had done with you. I would also get a copy of the ACH antibody levels and ANA test for lupus and others, because maybe he did the same with those- dismissed positive or borderline results that need repeated or followed up. Good luck!

 
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Old 06-27-2012, 08:17 AM   #9
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Re: Getting a diagnosis

If I were you - I would get to my general practictioner or family doctor - make your own appointment - tell your parents you will pay them back but that you need to talk to one more doctor about your symptoms...

I don't mean to scare you - but when my brother was finally diagnosed it was because of a lump under his arm -

The good sign with you is that the lumps in your neck hurt -typically lumps that are cancerous do not hurt - so in your case this is a good thing....

my brother knew he had this lump but was told for years that it was nothing but a fatty deposit - when all along it was cancer.

And all along no one tested him for hodgkins - I don't know what tests confirm it - but in the early 90s when he was diagnosed - the only thing that showed cancer was the spinal tap.

All the other tests were normal I think - that is why the doctors kept sending him home -

Let me know if I can be of any help - you need to get an answer to why your body temp raises in the afternoon and goes back down in the morning - and also the lumps in your neck - too many things are going on for a 17 year old - who should be healthy.

Kelli




I find it crazy that all the tests kept coming back normal - until he was in the end stage of the disease.

Is there a way you can get to a doctor and tell them you have the lumps in your neck and this strange fever that gets worse at the end of the day and returns to normal the next day????

It would be wonderful if your symptoms are from something else - and I can't imagine what you are going through - knowing that you are sick and being afraid......

Last edited by hb-mod; 06-27-2012 at 08:27 AM. Reason: Please do not post, or request contact information, such as email address, phone or name, per Posting Policy. Thanks.

 
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Old 06-27-2012, 08:27 AM   #10
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Re: Getting a diagnosis

A PET scan can show increased activity in lymph nodes, and CT scan is usually used initially to look for enlarged internal nodes in the chest, abdomen and pelvis to look for possible Hodgkins or non Hodgkins lymphoma. The definitive test requires a biopsy of the lymph node, preferrably the whole node, not just a needle biopsy, if a node is accessible and can be removed easily.

 
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Old 06-27-2012, 12:07 PM   #11
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Re: Getting a diagnosis

Quote:
Originally Posted by powergrub View Post
If I were you - I would get to my general practictioner or family doctor - make your own appointment - tell your parents you will pay them back but that you need to talk to one more doctor about your symptoms...

I don't mean to scare you - but when my brother was finally diagnosed it was because of a lump under his arm -

The good sign with you is that the lumps in your neck hurt -typically lumps that are cancerous do not hurt - so in your case this is a good thing....

my brother knew he had this lump but was told for years that it was nothing but a fatty deposit - when all along it was cancer.

And all along no one tested him for hodgkins - I don't know what tests confirm it - but in the early 90s when he was diagnosed - the only thing that showed cancer was the spinal tap.

All the other tests were normal I think - that is why the doctors kept sending him home -

Let me know if I can be of any help - you need to get an answer to why your body temp raises in the afternoon and goes back down in the morning - and also the lumps in your neck - too many things are going on for a 17 year old - who should be healthy.

Kelli




I find it crazy that all the tests kept coming back normal - until he was in the end stage of the disease.

Is there a way you can get to a doctor and tell them you have the lumps in your neck and this strange fever that gets worse at the end of the day and returns to normal the next day????

It would be wonderful if your symptoms are from something else - and I can't imagine what you are going through - knowing that you are sick and being afraid......
Thank you so much for all your advice, it has been very helpful for me to know that someone has gone through a similar situation. I have showed my parents the posts on this forum - and also the abnormal test results which I got earlier today and they have finally agreed to let me see another doctor at last! Thank you again as I think that what you said was part of the reason they were persuaded. I'm going to book an appointment tomorrow and hopefully finally find out what this is.

 
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Old 06-27-2012, 01:20 PM   #12
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Re: Getting a diagnosis

So glad for you! Good luck.

 
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Old 06-27-2012, 03:53 PM   #13
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Re: Getting a diagnosis

God Speed.

Any information is better than not knowing. Keep looking until you find the answers.

K

 
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Old 07-25-2012, 04:59 PM   #14
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Re: Getting a diagnosis

Hi so sorry to hear you are going through so much and no one believes you!! But you MUST get another medical opinion!! Go to a walk in centre or some other medical service that is accessible to you and seek help - even if you have to get a friend to take you or get a taxi!! You have a right to health care and a second opinion - even if your parents are disbelieving they should at least support you obtaining another opinion - if only for your piece of mind!! Good luck x

 
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Old 07-25-2012, 07:45 PM   #15
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Re: Getting a diagnosis

One other thought is to ask for a CPK blood test, which is a muscle enzyme that can be extremely high in cases of myositis, an inflammatory condition in muscles, associated with autoimmune diseases like lupus, polymyositis. Guillian Barre could explain muscle weakness from nerve damage, but not enlarged lymph nodes, so there must be something more going on. Did you have a bad virus or an immunization shortly before this all started? Guillian Barre usually follows a virus and sometimes a viral vaccination. It is also worth repeating the ACH antibody and lupus test, as these can change, and two results are better than one.

Last edited by ladybud; 07-25-2012 at 07:50 PM. Reason: added a comment

 
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