Tired of the run around

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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gentlecharlie
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Tired of the run around

Post by gentlecharlie »

I've been given the run around by doctors for about 3 years now. All of my symptoms point to MS, tingling, loss of balance, brain fog, etc. I even recently found out that the bladder issues can cause frequent UTIs, which I've had for years and have been to the ER for many times, including a bout of sepsis.
I've had several big episodes, the first being a few weeks where I couldn't walk and had to use a wheelchair. Diagnosis? Conversion disorder. "Stress". 6 months later, I went back in the ER but now I can't talk, I can think but can't get words out. It was easier to say words once I heard them. I drove to work but couldn't remember driving. Diagnosis? Conversion disorder. I've been given several MRIs, all clear. But all only of my brain and when I asked for contrast, I was told I would be given it, and then was never given any (Unless they can suddenly administer contrast through the air without you knowing). I've also had a few smaller episodes over the years where I couldn't lift things up, had a messed up gait and awful tremors.
This morning my arm was paralyzed, my roommate could move my fingers and my arm, but I couldn't change what she did to it. So I took a video of it and brought it in to my doctor along with a list of my other recent symptoms. My doctor's comments? That I'm so brave and smart for videoing it and that she'll talk to another doctor and see what they think.
It's been 3 years of doctor after doctor treating me like a hypochondriac and patronizing me with comments on how brave I am, or how good I am for telling them about my symptoms. I'm a 20 year old woman, I feel like that's part of why I'm being brushed off.
I'm sorry, after yet another brush off today, I'm so tired. I don't know what to do. I'm afraid to push for spine MRIs and contrast MRIs or even an LP because I don't want them to think I /want/ something to be wrong with me, or that I want attention. I just want answers.
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lyndacarol
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Re: Tired of the run around

Post by lyndacarol »

gentlecharlie wrote:I've been given the run around by doctors for about 3 years now. All of my symptoms point to MS, tingling, loss of balance, brain fog, etc. I even recently found out that the bladder issues can cause frequent UTIs, which I've had for years and have been to the ER for many times, including a bout of sepsis.
Welcome to ThisIsMS, gentlecharlie.

I have no medical background, but in my opinion you are NOT a hypochondriac (I also do not believe in "conversion disorder.").

MS is not easy to diagnose. It is a diagnosis of exclusion made after other likely conditions have been ruled out.

Since vitamin D deficiency is very common worldwide – some estimates are over 1/2 the world's population, and vitamin D deficiency can result in symptoms like yours, I suggest you see your GP (or any specialist you might have) and request a simple vitamin D blood test called the "25-hydroxy D" test. Also, ask for your own copy of the test results so that you have the actual numbers!

If no deficiency is found, move on to the tests for the next likely conditions. There are LOTS to rule out before you can consider MS.
Snoopy
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Re: Tired of the run around

Post by Snoopy »

Hello gentlecharlie,
I've been given several MRIs, all clear
There is a long established criteria for diagnosing MS --- The revised McDonald Criteria. This criteria relies heavily on MRI evidence. Your MRIs are clear. How was your Neurological exam? Normal? Abnormal?

Your age has no bearing on not receiving a diagnosis. There are children that receive a diagnosis of MS, there are Pediatric MS Centers. I myself was diagnosed with MS at the age of 24 with symptoms that go back to childhood.
All of my symptoms point to MS, tingling, loss of balance, brain fog, etc.
Unfortunately, there is no symptom exclusive to Multiple Sclerosis. Those symptoms could be caused by numerous things including your diagnosis of Conversion Disorder. Another name for conversion disorder is Functional Neurological Disorder (FND). You may want to learn about FND for a better understanding. An excellent website for FND is: http://fndhope.org/fnd-guide/symptoms/

Some women are more prone to UTIs than others. Ways to reduce UTIs:
- Drink plenty of water.
- Your partner should wash their hands before sex
- Urinate before sex as well as after
- Wipe front to back, Not back to front
- Cranberry supplements can be helpful
I've been given several MRIs, all clear. But all only of my brain and when I asked for contrast, I was told I would be given it, and then was never given any (Unless they can suddenly administer contrast through the air without you knowing).
Since the MRI without contrast was clear there was no point in using contrast. A clear MRI will be clear even with contrast.
This morning my arm was paralyzed, my roommate could move my fingers and my arm, but I couldn't change what she did to it
This is not how MS works. This is how FND behaves...I'm sorry. FND is caused by the subconscious mind and it would be very helpful for you to see a Psychiatrist and/or Psychotherapist. Best wishes.
ElliotB
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Re: Tired of the run around

Post by ElliotB »

Welcome to TIMS - You are among friends.

Have you seen a neurologist that specializes in MS? Have you had MRIs of your brain and spine recently? It does not sound like your spine has been done. If not, it should be. Have you had blood work done?

There are about 400 illnesses that mimic the symptoms of MS and MS can sometimes be difficult to diagnose.

Also, not everyone with MS has lesions. MRIs are useful to a point.
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Scott1
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Re: Tired of the run around

Post by Scott1 »

Hi,

You have UTI's so there's one source of inflammation. What other infections did they check for? If they have just given you a broad spectrum antibiotic and told you to go away then that's not a very good approach.
A lot of bacteria have developed an antibiotic resistance. Effectively they hibernate and focus on pumping the antibiotic out of themselves. When you appear to be symptom free and the antibiotic is discontinued they resume unscathed by the medication.
If your UTI's recur then this maybe happening to you. I think you need a more thorough approach than you seem to have been given.

Regards,
Snoopy
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Re: Tired of the run around

Post by Snoopy »

ElliotB wrote:Also, not everyone with MS has lesions. MRIs are useful to a point.
The hallmark of this disease is lesions. There are some who are initially diagnosed with MS and do not have lesions, this is a 5% category so it is rare. The longer a person goes without MRI evidence the less likely MS becomes.

It sounds like gentlecharlie has seen many Drs. and I am going to assume, maybe incorrectly, she had a neurological exam(s) and that it was normal. You can't have MS without lesions AND a normal neurological exam, everyone with MS has some deficits upon exam even if there are no visible lesions. A spine MRI could be done but if the Neurological exam was normal then spinal lesions would be highly unlikely. If you have spinal cord involvement your neurological exam will not be normal. A LP could be done but it is quite invasive and if the patient has a normal neurological exam and has no lesions why put the patient through the LP?
ElliotB
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Re: Tired of the run around

Post by ElliotB »

"You can't have MS without lesions"


You may be right but I don't think you are. You yourself state that 5% don't.

If you have seen this time lapse video, you can have a better appreciation as to why MRIs have limited usefulness:

http://www.msdiscovery.org/news/news_sy ... -meets-eye


I will never have another MRI as it won't tell me anything I need to know- my own personal experience... my 2nd MRI about 1 year after my diagnosis showed virtually no change from my 1st a year prior yet a very short while later I had an attack. The MRI was useless...

It is my understanding that you can symptoms without lesions and lesions without symptoms.
Snoopy
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Re: Tired of the run around

Post by Snoopy »

Hi ElliotB,

I guess I should explain a little of my history

I was diagnosed with MS in 1985 at the age of 24 (can take symptoms back to childhood). Process to reach a MS diagnosis took 3 months, this included: PCP to Neurologist, testing, and diagnosis. In 1985 the MRI was relatively new, there were two MRI machines in the entire State I lived in.

I underwent quite a bit of different testing. My MRI was clear no lesions and no brain tumor (a brain tumor was the first thing my Neurologist was trying to rule out), EEG was inconclusive and my LP was positive. My diagnosis was based on my neurological exam, positive LP, ruling out many things and my symptoms. I was diagnosed under a different criteria, the Poser Criteria. I am in the 5% who are diagnosed without MRI evidence.

So yes, you can have MS and it's symptoms without lesions. However, symptoms can be caused by many different things and only 5 percent will receive a diagnosis of MS without lesions on MRI. I suspect that percentage is even lower since the McDonald Criteria.

If a person has a clear MRI and a normal Neurological exam then it is unlikely to be MS.
ElliotB:
my 2nd MRI about 1 year after my diagnosis showed virtually no change from my 1st a year prior yet a very short while later I had an attack.


This isn't uncommon. A person can be doing/feeling fine but the MRI will come back with more and/or active lesions, A person can be in an exacerbation or not doing very well and the MRI comes back stable with no new lesions but sometimes the MRI will match up to how the person is feeling. I don't feel the MRI is useless but it could definitely be better, in my opinion.
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