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Old 04-14-2013, 12:02 AM   #1
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I am going crazy. i dont trust what Dr said

I feel like i am going crazy..It started 3 years ago..
I had pins and needles in my left hand and lower arm. The Dr said he thought i had Carpal tunnel. The tests said no. It went away suddenly about 2 months after it suddenly started.
Then about 6 months later i started having migraines that have not much head pain but uncontrollable dizziness, vomiting, eyes that wander and i have Arterial Fibrillation when i get them. I go to hospital and they give me IV meds to stop the vomiting, dizziness and eye movements. They come in clusters for about 3 months then nothing again. Approximately 7 months after that i got a patch on my back that felt like intense sunburn for about 4 weeks. It was so painful and the dr. said they thought i had MS.
So i went to a Neurologist and they did an MRI of my brain and spine. This showed slight deterioration of the spinal cord and spots in my brain that were not considered MS. They did not use die though.

I currently have the sunburn feeling again in my back and it comes with unbalanced movement at night. I nearly fall over when there is low light. I am stuttering also. This is new the stuttering as is the mixing up of word. Very frustrating at work because i have to read out contracts at work to customers. I will start stuttering, have to stop talking compose myself and start over. I also mix up words and numbers at the moment. This happened last time with the sunburn feeling too..

Please help me as to what to do. I feel stupid going back to the Dr so i am trying to cope at home with it alone. Can you have MS that does not show up on an MRI? Do they need to use dye to see it?

My dads sister had malignant MS and dies 18 months after diagnosis.
I know it is not that.. But even my kids are noticing my words being mixed up and i am getting depressed.

Edited adding info..
I have very low vitamin D at the moment which has been on going issue for years.
The Nuro suggested spots in brain due to true migraines.
The reason i do not have faith in his diagnosis is that these things keep happening and as soon as he read on my referral that i had a son die 7 years ago he focused on that for most of our interviews.
I know i should go back to Dr at the moment as i am stuttering and have this intense sunburn feeling in my back. But i feel stupid if they say it is stress.

Last edited by Tantan70; 04-14-2013 at 12:11 AM. Reason: More information given

 
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Old 04-14-2013, 07:34 AM   #2
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Re: I am going crazy. i dont trust what Dr said

There is no reason anyone should suggest all your symptoms are from stress. I personally would gather all my records, test reports and actual MRI pictures on film or CD and seek a second opinion from a neuro who specializes in MS, since you have a family history of it. There is a test called visual evoked potential that is very sensitive for picking up MS. If the second neuro thinks it is not, I would look at other possibilites. If your Vit D is very low, I would definitely get a B12 and folate level done, as low B12 especially can cause severe neuro symptoms. Good luck and keep us posted please.

 
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Old 04-14-2013, 08:42 AM   #3
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Re: I am going crazy. i dont trust what Dr said

TanTan, you need to take this one step at a time..

Lets back up. First of all, there is no such thing as Malignant MS. No one dies from MS; however complications in breathing, eating or even brain disorders CAN come from MS, and this can cause other things- which can eventually kill you.

Secondly, Sunburn feeling, could be a nerve disorder, could also be from an infection...its not absolutely MS. And, migranes WILL cause the types of problems you are experiencing..the dizziness, vomiting, eyes that wander and irregular heart beats, which is known as arterial fibrillation.

You asked about the MRI. The dye, which is called Contrast, is used to determine if an active lesion is happening....meaning, when something is actively going on- new symptoms- the scar, from a new attack, will glow white under contrasting dye...that's why its used. If nothing shows up, it can mean one of two things- A. that the attack is very old and the scar is not being picked up...or B. that the attack was very minor, and the scar is too small to show up on film. Either way, when a patient is being diagnosed with MS, they usually have brain and spine MRIs with and without contrast every six months for 3 years...if nothing still presents, MS can be safely ruled out.

The vitamin D deficiency is fixable- what are your doctors doing to fix it? It can cause the sunburn feeling, also some cognitive disorders (including mixing up of words) and it can definately cause tingling and numbness- BUT SO CAN ANXIETY. Im not suggesting you are crazy or that this is all in your head, but I am seriously asking you to try to relax and slow down your thoughts- because you are not helping yourself...

You need to go back to the doctor. You also need to have your MRIs repeated- with contrast this time. You need to ask why they werent done with contrast before and insist on it this time. If this doctor isnt working with you, you should gather up your films and reports, any blood work you have had and any other tests and go see a MS specialist....a MS specialist will take your complaints seriously, and order additional testing- and help you get answers.....

But in the meantime, you need to relax and breathe through this- or else you will make yourself physically sick. You obviously have to work and have children who need you..taking care of yourself is your number one priority.

I hope you feel better soon.
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Old 04-14-2013, 02:31 PM   #4
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Re: I am going crazy. i dont trust what Dr said

Tantan,

Welcome. There is a fatal variant of MS, but the variant is different than "normal" MS and is considered another disease. Medical attention early on has been able to stabilize these patients.

You low Vitamin D can cause MS like symptoms. Depending on how long the deficiency has existed and how quickly you can metabolize D with daily maintenance, it may take a few months to see noticeable changes.

I am sorry to hear you lost your son. This can bring tremendous grief and accompanying stress which can mimic MS too. Death ranks heavily on life event stressors.

I stutter and slur whenever I am experiencing mental exhaustion Given the length of time which you have noted, you should have indicators on an MRI image, I think. In order to get an official diagnosis, at least two lesions need to be noted. The dye (contrasting solution) will "light up" active lesions.

Was your neuro an MS Specialist? While you may have spots showing on your MRI, why did the doctor say "true migraine". You may need a new MS Specialist if your previous neuro was an MS Specialist. Many neurologists in general practice will state that they will see MSers, but for the diagnostic process, at least, I would encourage you to seek out an MS Specialist.

Again, Welcome You are not alone.
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Old 04-15-2013, 01:44 AM   #5
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Re: I am going crazy. i dont trust what Dr said

Thank you all for your feedback..

Ok so My dads sister had what they called Malignant MS which is The term malignant multiple sclerosis is often used to describe MS patients who reach significant level of disability in less than 5 years from their first symptoms..

She died from the respiratory issues arising from the MS.

The Nuro i saw said he deals with MS patients all the time. I felt very early on in the first interview that he was already putting my symptoms down to stress after reading my referal. Most of our conversation was based on my son passing away and his twin surviving.
He said i had Hyper reflexes on my left side lower extremities. He did sy he thought i would come back with a positive MRI for a small benign tumor in my spine. This did not happen and neither of the MRI for brain or spine had contrast.
Our next appointment was quick, he said it showed i had true migraines and gave me Zomig, Epilum and Naprosyn 100 for the migraines when i get them.
I do not know where to go for a MS socialist. I have contacted my local Dr today and she wants a repeat brain scan done.
I do not tolerate heat very well and these symptoms start in the spring and summers with nearly nothing in winter.

The sunburn feeling is definately not infection. It is about the size of a dinner plate more to the right of my spine. It is relieved by pressure. Any light touch from clothing or anything makes it worse.

The MRI report said something about demyelination in the frontal lobe. Question mark due to Migraines.

Thank you for your replies. I will ask my GP about another specialist.

 
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Old 04-15-2013, 07:13 AM   #6
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Re: I am going crazy. i dont trust what Dr said

Tantan,

You note Victoria as your domicile, is this in Australia or Canada or here in the US?

I would think that the neuro you saw is a general neuro who sees a variety of patients. I think you would have received a better reception from an MS Specialist, especially for your diagnostic phase. The MS clinic to which I travel houses many neurologists with a general neurologist and the rest specialists (MS, Parkinson's, ALS, ......) I think that you need to see a neuro whose only patients are MSers. I cannot say whether you truly have migraines caused solely by migraines and not by MS. Personally, I remember severe migraines when I was 14 until I was 18. These would come and reside in my head for a month or more. I still get these pains, but I hit back early with either dark chocolate or my Diet Dr. Pepper depending on where the pain originates. Today my rarer pain is coming via my right eye. I have been wearing an eye patch for 3 days now and it helps greatly. If the pain starts to spread, I will use acupressure applied perpendicular to the area of pain.

I hope you can get some answers. To lose a child is difficult and having lost one twin is more difficult, I think. To that end, I cannot imagine losing either of my sons. If there is grief counseling available, you might check it out. What you are feeling could also be felt by other family members. At least in many similar groups you will be able to speak with others who can truly empathize with your loss.

Stick with us here and vent and share as you need. You are not alone.
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Old 04-17-2013, 03:00 PM   #7
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Re: I am going crazy. i dont trust what Dr said

Yes i am in Australia. My Dr sent me to a Neurologist who says he deals with MS patients. I am wondering if i should ask her about going to the Royal Melbourne Hospital MS clinic?

 
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Old 04-17-2013, 03:18 PM   #8
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Re: I am going crazy. i dont trust what Dr said

Tantan, I think I would go to the MS Clinic as that would appear to be their main emphasis. I have not strayed from my university's MS Clinic here. I know that when I traveled in Australia I kept a list of MS Clinics with me and the Royal Melbourne Hospital was on my list for my travels in Victoria.
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Old 04-18-2013, 04:36 PM   #9
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Re: I am going crazy. i dont trust what Dr said

HI all,
I have contacted MS Australia.
They were wonderful. They have said that the Nuro i saw is a general nuro who does not specialise in mS. I have spoken to the nurse there and she said my symptoms definitely need investigating further. I forgot to put on here that i had a 4 to 5 week period where i had intense body itching that made me bruise everywhere as i was itching so much. I was sent to a dermatologist who could find nothing Then when the weather cooled down it disappeared. During this time i had to have a lot of time off work, not just from scratching o badly but because i had hardly any balance at all.

Any way my Gp is seeing me tomorrow to give me a referral to the mS clinic in Royal Melbourne Hospital. If they say no, then i will feel safe.
The nurse at Ms Australia also said to ask my Dr not to put in the information about one of my twin boys passing away. It was 7 years ago and has no bearing on my medical problems starting about 14 months ago..

Yes it is hard and i miss him every day. I am doing a degree in counselling to help other families through this. I have 6 children (one in heaven) and i am now a single mother (since his death). So nothing new has happened to trigger these symptoms that is stress related. I ould have thought if it was stress related i would have had them 7 or years ago.

She also said if it is MS, they can help me with work situations. I have not told my boss what is going on. When i take time off i get a sick cert or go on annual leave. No need to tell them anything unless it is proven to be MS.

 
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Old 04-18-2013, 08:24 PM   #10
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Re: I am going crazy. i dont trust what Dr said

Tantan,

Great progress! Yes, MS Australia is a great organization. They also have rest houses for those with MS which are in nice locations where one could take a good rest.

I think your study pursuit will be a great thing and your personal journey will help you in your efforts.

Stay strong!!!
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Old 04-19-2013, 03:28 AM   #11
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Re: I am going crazy. i dont trust what Dr said

Congratulations Tantan. Sounds like you found an excellent support system! Please keep us posted on when you get the appointment, and how it goes. Sending prayers out to you for strength during this overwhelming time- but Im very proud of you for making the call and moving in a positive direction! Alot of people wouldnt advocate for themselves- you did exactly what you had to do! Great job!
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Old 04-28-2013, 12:01 AM   #12
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Re: I am going crazy. i dont trust what Dr said

Just to let you know. I have my referral in now. The hospital has received it. I do not know how long the wait list is. My Dr said it defiantly needs a closer looking at.
I will let you know what happens. Thank you all.

 
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Old 04-28-2013, 06:37 AM   #13
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Re: I am going crazy. i dont trust what Dr said

Good luck !! We are here if you need us before that, but please let us know what happens!
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Old 04-28-2013, 08:37 AM   #14
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Re: I am going crazy. i dont trust what Dr said

Tantan,

Great update! I hope your wait time is short!
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Old 04-28-2013, 11:16 PM   #15
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Re: I am going crazy. i dont trust what Dr said

Quote:
Originally Posted by Tantan70 View Post
I feel like i am going crazy..It started 3 years ago..
I had pins and needles in my left hand and lower arm. The Dr said he thought i had Carpal tunnel. The tests said no. It went away suddenly about 2 months after it suddenly started.
Then about 6 months later i started having migraines that have not much head pain but uncontrollable dizziness, vomiting, eyes that wander and i have Arterial Fibrillation when i get them. I go to hospital and they give me IV meds to stop the vomiting, dizziness and eye movements. They come in clusters for about 3 months then nothing again. Approximately 7 months after that i got a patch on my back that felt like intense sunburn for about 4 weeks. It was so painful and the dr. said they thought i had MS.
So i went to a Neurologist and they did an MRI of my brain and spine. This showed slight deterioration of the spinal cord and spots in my brain that were not considered MS. They did not use die though.

I currently have the sunburn feeling again in my back and it comes with unbalanced movement at night. I nearly fall over when there is low light. I am stuttering also. This is new the stuttering as is the mixing up of word. Very frustrating at work because i have to read out contracts at work to customers. I will start stuttering, have to stop talking compose myself and start over. I also mix up words and numbers at the moment. This happened last time with the sunburn feeling too..

Please help me as to what to do. I feel stupid going back to the Dr so i am trying to cope at home with it alone. Can you have MS that does not show up on an MRI? Do they need to use dye to see it?

My dads sister had malignant MS and dies 18 months after diagnosis.
I know it is not that.. But even my kids are noticing my words being mixed up and i am getting depressed.

Edited adding info..
I have very low vitamin D at the moment which has been on going issue for years.
The Nuro suggested spots in brain due to true migraines.
The reason i do not have faith in his diagnosis is that these things keep happening and as soon as he read on my referral that i had a son die 7 years ago he focused on that for most of our interviews.
I know i should go back to Dr at the moment as i am stuttering and have this intense sunburn feeling in my back. But i feel stupid if they say it is stress.
hey Tantan.

oh, your story touched me. i wish you find a good answer soon. i also lived with the so-called carpal tunnel for 9 months. and i always felt bad going to gp, one month i said it s better, one month i said it is worse.

good luck and i hope u update us with ur situation.

 
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