Repost, Does this sound like MS.. If not does anyone have any idea what it could be...

[Katherine1963]

Hello everyone...

I am here because I feel that I am having  MS symptoms.  

I have been having relapses for the last three years.

It begins with disorientation .

I have a lot of trouble concentrating,  

I am constantly shaking.

I can't hardly write out a check because of my shaking and lack of concentration.

This goes with everything I try to do.

There has been times when the cashier will run after me to get me to finish filling a check out..  

My eyesight is getting worse.

It is like  my eyes are dilated.
My eyes are  really sensitive to the light glare of night driving.

I loose train of thought.  I will be talking and I stop in mid sentence.

I have to really think about what I was talking about.  

The worst thing about these relapses are the terrible whole body  tremors.

My whole body goes into a complete muscle and nerve breakdown..

I can't stand,  I can't walk and I can't talk.  

I can't even put my fingers together to take a pill.  

My words are all jumbled up.

There have been times that I would be standing and I get a terrible pain in my hips or back and I fall to the floor.

My blood pressure  will fluctuates.

These relapses last for a day and then I am so tired it takes a couple of days just to be able to function.

I have been off work now for over a month, and I don't see gong back to work any time soon.

   i have had the MRI and it was normal.

I had the EEG which I was told that it read  normal.

but when I went in to do the EEG test, I walked into the office and I had to have a wheelchair when I left the office.

before the test I felt pretty normal.

After the test  I wasn't able to roll over, stand or walk.

When they put me in the wheelchair my feet would just slide off the foot rest.  I had no control of them at all.  

The EEG on my legs  felt like I was being electrocuted from my feet to my head.

After the EEG I had a headache for two weeks.

My headache was like when you hit your elbow and that feeling afterwards.

That  feeling ran up from my neck into my head.

It also felt like someone had a bandanna tied tightly around my head.

Just a lot of pressure and pain.

My doctor has no clue to what is gong on.  

They are trying to get me into one of the major hospitals for more testing but the waiting period is like up into Jan of next year.

I now find myself crying when I have these relapses because  I know something isn't right.

It is so frustrating!!!    

If any of this sounds familiar or you think that it could be something else let me know.

Well, I just need to know what  you all think..  

Any advice will be seriously considered..  

[COBOB]

It does not sound like MS.  It sounds a lot like an endocrine or neurologic issue, but the symptoms seem to be too short a duration and cover too much of the body at one time for MS.  Seizure or atypical migraine?  They really need to get an EEG when you are symptomatic.  

Bob

[RedFlame]

I am so sorry that you are going through all of this.  It sounds like you are getting closer and closer to answers though.  Hopefully they will find out and you will be able to be treated effeciently.

Take care

Red

[Katherine1963]

Well,  I went to my Neurologist yesterday and well just say he prescribed me a wheelchair and more medication.  He is still trying to get my tremors under control.  

I was having one of my spells of where my body has no strength and the tremors just take over my body.

Just say I had a bad day yesterday.

Today is just a day of taking it all in and coming to the realization that this is what it is and I have to deal with it.

It is just sad that it really hurts the ones you love the most.  They don't know what to say or do.  

I do hope everyone is having a good day..

Katherine

[sllowe]

Thank you for the update Katherine.

Heck of a way for them to see first hand what is happening, but I'm sure glad they did.  This should definitely get you and your doctor closer to a cause.

What pain med is it? I'm guessing something for nerve issues. If you don't feel anybetter w/your head feeling funny like that, please call the doc asap!

I wish you were not going through this....
-shell

[Katherine1963]

I went in for another EMG today.  

I guess you can say it went well and it didn't go well.

It went well to the effect that my New neurologist finally got to see me in one of my bad spells.  

They were only able to do the test on my left arm.

The test itself went well.  It really didn't hurt. It wasn't  like the test on my legs when my first Neurologist did the test.  That Technician didn't know what she was doing...

I completed the test on my left arm and everything was going really well.  Then...

I set up to lay at the other end of the table so she could do my right arm... Then...

My legs went hay wire.  The Tremors were really bad.   Not as bad as the first time I took the test on my legs.  But bad enough that I couldn't walk and you would not want to be standing in front of me because I would have kicked the fire out of you.

My Blood pressure went up and all of my strength just drained out of my legs  arms and hands.

I asked the Technician if she had ever seen anything like this and she said no. I reassured her that it wasn't anything that she had done.  

So My Neurologist said no more EMG,s   He said that we would figure it out.  He said that my left arm test was abnormal and there was some nerve damage showing up.  

Right now my neck and shoulders have a burning sensation  and my head feels a little funny.  I have put off taking any pain medication but I think I going to have to break down and take something...

I'm suppose to see my Neurologist again next week

I will keep you posted..

Katherine

[sllowe]

Oh my. You must be in a lot of pain with that as well.
I'm sorry to hear of your complications w/the LP.

Please do stay on with us, Katherine!  I hope this doc works on getting you some relief.

- shell

[johnnymutt]

I for one am interested, and would love to see you  keep posting here. So often I see someone with symptoms, working on a diagnosis, and never find out what was discovered. I truly hope for the best for you.

Johnny

[Katherine1963]

Well I have been through alot since I last posted...

I have been in the hospital to do the lumbar puncture and that didn't go to  well so I had to stay a few extra days...

After all was said and done... I do not have MS!!!

I have the Autonomic Nerve Disfunction,  Orthostatic Tremors, and Cervical Spinal Stenosis.

The Cervical Spinal Stenosis  is in my C5 and C6 area of my neck.  It is really bad.

I told my Neurologist that it look like my neck was broke. I am scared to even move my neck now.

There is no spinal fluid at all around that section of my neck because there is nowhere for it to be.  

My Neurologist is going to try and run another EMG in a few weeks to see how much nerve and muscle damage is done.  

After reading up about the symptoms of the Cervical Spinal Stenosis, I really feel that is where all my tremors and complete lack of control is coming from.

I know this is an MS forum, but If you would like, I will keep you all informed in what is going on..  

Katherine

[sllowe]

Hi Katherine!

Thank you for letting us know!  Did he say what he expected to see w/the diet change?

It does sound as if he's not taking those lesions lightly. I'm so glad to hear this.  The invasive test may be a LP (lumbar puncture). My doc waited until the end too to suggest this. I went for it because I wanted something to finish telling the tale. In your case though, I'm sure there is a good reason he's not ordeing it. He cares, and doesn't want to risk you getting worse.
Think he's a keeper!
Do keep in touch, and like Lu says, ask anything,
~Shell

[Lulu54]

Katherine, it sounds like you have made great progress even though you don't have answers.  Neuro time is usually very very slow........  so be patient.

Did he say what invasive test he was thinking of ordering?  

Most of all keep us posted.  And feel free to ask any and all questions.

be well, Lulu

[Katherine1963]

Well today was (D day) Diagnosis Day

My ANS test came back abnormal.   I Found out that I have  Autonomic Dysfunction disease for sure.  

My neurologist is having me do a diet change to see if it will level itself off so I can be somewhat normal.  He said that there are medications but he wants to do the diet thing first.

He also said that there were four small lesions on my MRI.   He is suspecting MS.  

The blood work that he has received has come back normal so far.   I go back again on November 17th to get the results on the rest of my blood work.

He wants to wait on the more evasive test until I have another spell with my weakness and tremors. he wants me to go to the hospital when that happens.

He said that the evasive testing that I would be doing  could cause more problems because of the  Autonomic Dysfunction.  

I don't know what is worse.

Knowing or not knowing...  

Katherine

[Katherine1963]

I did go into my neurologist today.   He is not wasting any time in trying to diagnosis what is going on with me.  

He drew out a tube of blood at the office today and then sent me to outpatient at the hospital and they drew out three more tubes of blood.

He sent me over to the place where I got my MRI and the Neck ultrasound to pick up the results and bring them back to his office..

I am also doing a 48 hr, urine collection.  

I had an ANS test done today and I will be doing an EEG test Thursday.   No results on that yet.

He said that his thoughts on the matter was that I have this really rare tremor disease that was hereditary. He said the name but I can't remember it.

He said that if it turned out to be the rare  tremor disease that there is a medication and most people can go back to their normal living.

He is testing me for diseases  like Huntingtons and Wilsons  too.

He said that he did know that It wasn't Parkinson's and he named a few more devastating diseases. that he said that they were ruled out...

He didn't mention if it could be MS or not.  He wanted to look at the MRI himself and go from there.    

Just wanted you to know what happen today.. I will try and  keep you posted.

Katherine

  

[Katherine1963]

I will let you know how everything goes...

I wrote down the tests that you recommended and I will talk to the neurologist about doing them.  

I just hope that this gets figured out soon.  

Thank you so much and I will stay in touch..

Katherine

[Quixotic1]

Hi, Katherine, I so sorry you are suffering like this.  It sounds awful.

I beleive the test you had on your muscles was called an EMG.  An EEG uses electrodes on the scalp only and causes no pain.  I think a true brain EEG might be a useful test also to see if this is an unusualy type of seizure.

Your episodes do not sound like any MS relapse I have ever heard of.  The whole body tremors and paralysis lasting such a short time are not the way MS acts.  I thoroughly disagree with your GP that this might be the later stages of MS.  In the later stages, MS does not come in clear attacks, but rather leaves the person with ever-increasing disability.

By the same token, though, this would NOT be at all like ALS, or Lou Gehrig's Disease either.  ALS leaves the mind completely unaffected in the beginning and does not come and go in attacks like this.

You have having a great amount of problems with your cognitive processes.  One of the tests that I think would be useful is a battery of tests called Neuropsych testing.  This can pinpoint which activities of the brain are malfunctioning.

A spinal tap can neither prove MS nor can it rule out MS completely.  

Please let us know how the visit with the new neurologist goes.

Quix, MD

[Katherine1963]

Thank you for your post.  I'm not having a good day today. I am so ready to get this figured out.

Katherine

[jensequitur]

That's the problem with the internet - you can find all sorts of things that sound like the problem.

Your spells that you describe are not typical with MS.  With MS you'll get weakness or tremor of one limb, but not whole-body paralysis, or whole-body tremors.

The GP does have a point - if you've got lesions that are causing total body paralysis, then the MRI would show something.  Unless it was a very low resolution MRI - I'm assuming it was 1.5T or better.

So stick with it - he sounds like he knows what he's doing.  In your situation it's very difficult to get a diagnosis - good luck!

[Katherine1963]

I just found out about 5:00  that I have an appointment to see a neurologist this coming Tuesday.  

My sister in law called her nero to get me the appointment.  

I will have to call my GP and tell them I have found a neurologist and have him send them my chart and refer me to this Neurologist for insurance purposes.

It was a different neurologist who had done my EEG.  

After the bad experience I had with the EEG and the Neurologist not showing any concern at all about my condition after the test.   I refused to go back to him.

All blood work done in my GP's office come back normal.    

It was my GP who was trying to get me into see someone.  

His nurse said that she has call Lexington, Louisville and Nashville Tenn. (Major Hospitals and neuro clinics ) to get me the further testing I need.

but they either can't see me until next year  or they will not call her back.

Just in the month of August I ended up in the emergency room twice and the GP's office three times. One of which was in the trama unit.  

Each time all blood work come back normal

and it left my GP scratching his head.  

we tried a couple of medications but it just made me walk around like a zombie or made me sleep for five days straight...

i think he was treating me for a nervous breakdown or panic attacks but the taking of the medication was worse than going through what I call my spells.

and I have read up on those conditions and it just don't add up..

and I had had one of my worst spells while on the medication.

This is something that comes and goes and is getting worse each time it happens.  

My last spell was two nights ago.  I went and had dinner at my mother in laws for my hubby's birthday.. had a good time.  

I could feel it coming on.  

again I was totally disabled

major whole body tremors, like I had been out in the freezing cold for hours.

complete and total nerve and muscle breakdown..

could not walk, talk, stand  of lift myself up from laying or sitting position.

My husband had to assist me in the bathroom and undress me and put my pajamas on. again it lasted on into the next day and I still not feeling well.

I keep telling my husband to get the camera out and record me; but while this is going on with my body, the last thing he is thinking about is getting the camera.

My GP said that he would think that if it is MS, that it would be in its latter stages of the disease. and there would have been signs of it all over my MRI.

But after the reading and searching I have done MS is the only thing that I find that I do have all the symptoms.  or the better choice of what else it could be.  

The one thing that my GP asked when he first seen me was.  Did Lou gehrigs run in the family.  It doesn't.  

the MRI come back neg on that too.
I am going to have the spinal thing done to rule MS out completely.

then I will see where it takes me from there.

It has taken me about an hour and a half to write this.

I will keep you all posted.  

thank you so much for your input...

Katherine

[jensequitur]

Well, the whole body tremors don't sound like MS.  They sound like something, though!  Hang in there and see what your neuro can figure out, I think.  It sounds like they're doing everything they can.

[figuerpa]

Are you seeing a Neurologist or just seeing your primary doc? The reason I ask is because a neuro will to a exam to see if you fit the MS profile.

You are in Kentucky right? Well waiting till January seems crazy to me but I guess they are overbooked. Maybe if you aren't seeing a neuro you should get a referral from your GP to get in to see one and he can get the testing done quicker than January.

Has your doc done any evoked potential tests or tried to rule out any other of the MS mimicks?

I am sorry you are going through all of this and I hope you get the answers you need.


Take Care and thank you for fixing your post :)

Paula