Multiple Sclerosis Community
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480092 tn?1208986162

2 doctors once thought MS, is it?

Starting in around the year 2001 or so, I was diagnosed with Hepititas C related arthritus and Chronic Pain Syndrom with muscular atrophy. Then shortly after, Cavernous Hemangioma of the liver which has been growing over the years.

Then in 2004 I had a bought of Thrombosis and neurological problems with limbs after that. Migranes and eye pain started. Dizzy spells. Then a year ago I stopped being able to eat. I have been loosing a lot of weight and I am 99 pounds.

I have been fallling down in the day and hanging onto furniture while the house spins getting in and outer body sensations, flashes of lightning and shadows and halos. At night I sometimes wake in a moment of convolsions unsualy trying to gasp for air and at first think earthquake. Last night the convulsion lasted a long time and I was partialy awake and was hallucnating, seeing and hearing things. My neck was contorted backwards and I thought it would snap. I shook violently unable to speak. I was very sleepy after but fought to stay awake all night.

I am having bladder problems, memory problems and can not remember how to cook or what i am doing half the time.

I smell burnt weird strange intense smells no one else can smell. I am cold all the time or too hot. Some days my limbs wont move when I need them to. Sometimes my joints are in so much pain I can not walk or lift up my arms. I have worm like feeling up my spin and in my limbs and uncontrolled movements.


Doctor disbelievs me about the convolsions. He wont send me back to a neurologist, wont give me a brain scan. 3 yrs ago I had a EEG, but not the kind where they sleep deprive you. Three years ago I was not convulsing. Of course the scan was normal. but I frequently hallucinate if I have had insomnia. How accurate is an EEG?

I get up to 2 months of insomnia at a time.

My diagnoses? Mental illness of the personality disorder disociative disorder type. With possible Schizophrenia and or Bipolar Disorder on top. A doctor, not a psychiatrist gives me this diagnoses before I even sit down in his office to talk to him. I had never met him before. He treated me with absolute contempt. I went to him out of respect for my physician who asked me too.

My husband and I say............" what the heck kind of schooling did these doctors get? something physical  is obviously being missed......NOT MENTAL! It doesn't take a brain scientist to figure that out.

Now I am stuck in a small town with a label and they don't let patients move to other doctors or they are labelled difficult. I have had this doctor for 4 yrs. He does not believe you can have a concious sezier or convulsion. What planet is he from?

I am fed up, hurt and so very angry.

11 Responses
378497 tn?1232143585
Sounds like seizures especially with that post-ictal exhaustion. It can be very dangerous for you to go undiagnosed and unmedicated for these. You need another doctor. If any doctor takes your symptoms and checks you out and decides that this might be attributable to "psychiatric" issues, that doctor should refer you--in good medical practice--to a psychiatrist. But your first step is going to another doctor, even if it's in another town. The one you have now is exhibiting behavior bordering on malpractice.

If you were indeed to be diagnosed with the disorders you state and the diagnoses were actually to be accurate, you should at the very least have been put on a series of medications for them. No doctor in good practice would diagnose someone with those disorders without providing the appropriate counseling, referral, and medication for the disorders. The way you describe the behavior of this doctor sounds like malpractice.

Dissociative personality disorder is a serious diagnosis, and a questionable one. Schizophrenic disorder and bipolar disorder are both deeply serious and amenable in many cases to medication. If these are truly suspected, the first step would be medications designed to ameliorate symptoms; of course, if they work, then you have your answer. If they don't, then that could mean that (a) you're just someone they don't work on, or (b) these proposed diagnoses are not accurate. But first, you'd need a real psychiatric evaluation before any such diagnosis could be made or meds prescribed.

Get a new doctor, ASAP. That's the first step and the most important one at this point.

195469 tn?1388322888
I asked another member to take a look at your post to see if she could give you some insight about your seizures.

I really think that Bio gives you some great advice.

Hang in there...

Avatar universal
You are going through so much right now and you sound very upset and justifiably so.

There are some very knowledgeable people here who will help to steer you in the right direction.

Wishing you the best...
335728 tn?1331414412
I believe that biowham gave you the best advice here honey in you need to RUN to a new doctor in a new town A.S.A.P.!!!

If in fact you did suffer from these "diagnosis" that these "doctors" have laid upon you, you would not be left out in the cold with no assistance from them be it in the form of medication or counselling.  If in fact they have diagnosed you and refused to treat, I am thinking that a lawyer may be of more assistance!

I have suffered from seizures back in 1993 when I was diagnosed with MS.  These were Grand Mal Seizures and I was not aware of them at all until the next morning because I only had them at night.  I have been  on anti-seizure meds ever since and have not had a seizure for about 11 years.  

When you have these seizures (convulsions), do you lose control of your bladder?  Have you ever gone to an emergency room for a consultation when these seizures happen?  If not, you should!  You need to be seen by someone far away from the doctor's you have already seen...the lack of care you have received is ridiculous!  Have you ever noticed any petechiae (tiny little broken blood vessels on your neck or face post seizure)?  Have you ever seriously bitten your tongue during one of these seizures?  You should try to keep a diary of everything very carefully while you are waiting to see a new doctor.  If possible, take pictures of the petechiae and any sores on your tongue from biting it.

Was your husband present during the episode last night?  If so, you can ask him to write a short explanation of what happened as well.  He will be your best advocate as he is there living with you and has seen these occurences.

Your explanation of being really sore and tired every day can be directly related to the seizures...if you are posturing it is very hard on your body(toes pointed towards end of bed, hands pointed toward end of bed).  The smells can be directly related to the seizures as well...many people that suffer from seizures have these "auras" and can be a precursor to a seizure.

Honey...you need to discuss with your husband what the possible result for you could be should you not seek further medical care...you need to be taken to a large emergency room and you do not tell them of the doctor's you have seen in your small town and you start with a clean slate!  If you do not do this your life could be in jeopardy!

I am really concerned about you and I hope that you will heed some of our advice...you have to be seen by a professional and you have to do this NOW!

Please stay in contact with us and let us know how you are making out ok?  We are here for you 24/7 and if you need to rant, rave, cry or laugh...we are here for you!  This is a great group of people and we are here to give you all the support we can!

Lots of Hugs,

195469 tn?1388322888
As always Rena, I thank you for your sound advice.  You are a God-send, with your knowledge about seizure type disorders.  Thank you SO much, for as always, extending your loving hand to another.  

Each and every person on this Forum contributes so much in the way they reach out to others.  Wow, do we have a great Forum or what?

Big Hugs,
429700 tn?1308007823
Please keep us posted as to how you are doing.  I'm worried, as well.  You are in immediate need of seeing a new physician ASAP!  I agree 100% with what people have said so far, and Rena has a very good suggestion about seeing an ER doctor.  

Please go, NOW, Sweetie.

480092 tn?1208986162
Thank u for the support. I will keep u psted but have so much on my plate and don't know how to tackle things right now.

Some of u gave lots of great ideas on different forums. I will make a list of each idea and then go find someone in or out of town that might help me attain these tests or get into these specialists.

I'll come back here sometime with a list for my journal to keep track of everyones ideas. In the mean time , more ideas are welcome until i find out whats happening here.

Thanks a bunch!
480092 tn?1208986162
How accurate is a EEG?
Avatar universal
IS your Hep C chronic?  If it is do they think any of this could be related to liver dysfunction.  Have you had your ammonia level checked lately and do you see a gastroenterologist.
480092 tn?1208986162
Hello, thanks for asking.

Don't you hate answers that are complicated? This one is.

Lets see, I have had Hep C for about 15 to 20 yrs. One doctor a long time ago was worried about liver enzymes and sent me to seminars that taught me much that even doctors don't know.

Eventually, saw a gastronologist Internal specialist who said I have CHRONIC ACTIVE HEP C. He said one day after having biopsy and such, I would need treatment and that down the road things could get ugly.

Yrs later saw more specialists and had a Biopsy of liver and became one of the 4% to get a HEMATOMA to the liver. Was ill for many months after.

I have never had treatment because the govenment wouldn't pay for it here in Canada unless very ill and my biopsy was good.

But I am supposed to have this Biopsy every 5 yrs. It has been about 6 yrs since last and my current doctor will not send me to any specialists for Hep C.

Saw a neurologists years ago and was Told I have Chronic Pain Syndrom and a type of Arthritis that only people with HEP C can  get. Don't know the name of it. my records of all this are missing somehow. They were deleted by accident on computer and that specialist I can not remember his name. The ones that i do remember their name no longer live in the town they used to and the one that I did track down did not remember me nor have me on file as having any of the problems he said.

It's enough to make a normal person start to believe that perhaps they are insane. ( all these missing records and such )

Current GP says liver enzymes are normal.

I have been missing out on the fact that the government for awhil was paying for everyone to get treatment here. But i missed out.

I am a Geno type 1

That is all I know.
480092 tn?1208986162
No Amonia checked, should I?

I have a surgen who is trying to help me find out whats wrong with my stomach. I am booked for a gastro scope thingy to go down my throat and get biopsy. Not until June 14 or so.

I must remember that this surgeon said she can get me into see a heptologist far away out of town. I just hope I have the means to get there back and forth. Thanks for reminding me.
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