Do I have Ms?

I am going to post what has happened so far am am hoping someone can verify what I think is happening.  My biggest problem s crappy health insurance and not being able to find a neuro that will accept my insurance to look at my records.  Sorry it is so long.


It all started a couple of months ago.  I started waking up at night with awful cramps in my legs.  I was a little more tired at night then usual and less willing to take care of things at home due to my being so tired.  I just chalked it up to working and being a mother of four kids.
  
A week ago I came left work, went to pick up my son from school and  I noticed that when i was standing and talking to his teacher that I couldn't wait to stop standing there and talking.  I just wanted to sit down.  So I got bill in the car, went home and started my nightly ritual of getting dinner ready.  I noticed that I was having trouble standing and that I had to keep leaning.  I started dinner and had to call My husbamd to finish. I ate dinner with the family and noticed that i was having trouble keeping my head up.  I went to bed that night and slept.  I was so tired i couldn't even stand anymore.

Next morning i felt better and went to do mass at school.  I am a music teacher.  I noticed at mass that i was foggier than usual in my mind and that I was careful f my knees and couldn't go down in both. Went to the office after mass and My principal said I should go to the hospital.  The hospital ER doctor did a neuro exam and i failed.  A this point my walking was pretty much done for and i was exhausted.

They did blood tests and a CT scan.  Neuro came and and what an ***.  He looked at me for a couple of minutes, poked and dangled and then left saying i was fine and that it was my concerta i take for ADHD that was causing all of my trouble.    The hospital did an ultrasound on my legs to see if i had blood clots and i didnt.  

Anyhow, I was sent home two days later with a walker and hobbled around the house.  I was beginning to get vey depressed with bouts of tears and wondering what the hell is wrong with Me. I think I have ms and all signs and symptoms point to that.  I am not a doctor obviously but i do know that something is gong on and that i am not about to drop dead.  What else could it be. I think the doctors will search for anything besides that.  I know it is a terrible diagnosis and I am not looking to be sick.  But the truth of the matter is that i am sick with something.

I have done a lot of damage to my body that i could never even make lists of due to clumsiness. The fact that i am not dead is miracle.  I never broke a bone which is a gift from god in itself.  
I started to feel better just laying around my house for a week.  So I went back to work.  

Five years ago I had a "nervous break down.". This was followed by unidentified seizure activity.  I had betteer insurance at the time so I saw a local neuro who ordered an MRI.  It show multiple legions that were slightly rounded.  On the actual report it said this could be due to demylinization I.e MS or Lyme.  

So I saw my PA after this recent occurrence and he order a bunch of blood tests and another MRI.  This was done without contrast.  The first MRI was with contrast.  I've read n this forum that this could matter or not.  He said that the recent MRI hadn't greatly changed from the first but from what i have read, that means that the recent MRI may not hve show new activity since it was done without contrast.  Apparently the lesions that were there five years ago are till there.  I am going Monday to pick up the report so I can actually read it.  

Results were negative for Lyme, lupus, arthritis, etc.  The PA said he couldnt dismiss MS nor verify it.  Jessie that this was way above his pay grade.     He said I have to see a neuro.  I asked if he could err anyone who took my insurance and he said the clinic.   I called and they said that i could get an appt. in September.  I then called The PA and he said there was nothing he could do.

Since then ive Woken up in the middle of the night to use bathroom and my right heel was completely numb.  It felt like i stepped on a marshmallow.  The days Start off good but have to use my cane.  Having a hard time at work.  Cane helps a lot but have to sit a lot more.  Spasms happening while standing and sitting.  Night time is back to the way it was.  Muscle spasms in calves and pins and needles which are actually getting painful.  On a scale of 1 to 10 I would say it is a 7.  Muscle spasms are making me actually gasp.

By friday my Legs and whole body is exhausted.  Am thinking i need a more sturdy can like the one that stays attached to my arm.  I keep forgetting where I put it.  This morning at mass i completely forgot what two play on the piano.  I was sotting there hearing the music in my head but couldn't connect to my hands.  It was extremely embarrassing.  The problem with forgetting where my cane is that when my legs are that tired and I am not using the cane, my left knee gives and i almost fall.  I noticed today the the majority of my problems while i am walking are on my left side.  I have more weakness in my left arm as opposed to my right.  I don't know if that matters but thats the way I feel.

Now, today,  I get up and needed my cane right away.  My body is exhausted and when walking without the cane i have a sort of weird walk.  I think it is called an unsteady gait.  If i ever get to see a neurologist, they'll explain it to me.   My fear is that if I don't get diagnosed soon and get on medication that this is going to get worse quick.  I am not fearful of the future because I accept whatever path I need to walk, I just want to be able to plan for it.  If this is truly MS. I may not have as long a time to work in school as I thought.

Thats it.  I am really sorry for posting such a long first message.  It has just been so hard for me to get any answers and not being able to find a doc is making it even harder.  Any help, advice or anything will be greatly appreciated.  I look forward to hearing from anyone who can identify or give me any help.

Good night.

[COBOB]

Welcome to the forum.

I'm not sure how to evaluate what you have said.  You really can fail a Neuro exam. but you can fails certain tests in a neuro exam.  Bilateral (symmetrical) symptoms are a "Red Flag" for neurologists.  It is not a typical presentation of MS for someone with cerebral lesions.  It os not that it doesn't happen in MS, but it usually happens more on one side than the other.  Usually, lower extremity bilateral symptoms tend to point toward thoracic lesions.  

Lyme's is pretty difficult to detect.  Simple test for Lyme's titers are pretty useless in early acute disease.  There are other more specific tests like the Lyme Western Blot and Lyme PCR test that you might want to talk to a Lyme Literate MD about.  

Hartford Hospital, UConn Heath Center in Farmington and Yale would be the places I'd be looking for a workup.  I'd consider being evaluated by a neurologist and potentially a rheumatologist.   While it your symptoms sound neurological, RLS, Fibromyalgia, CFS, Lyme's, multiple myopathy, neuro-muscular disease could all still be in the diagnostic realm.  There are other tests besides the CT and MRI that might add some data: VEP, SSEP, BAER, EMG, and several lab studies (ESR, ANA, Liver Panel, CPK Isos, etc.)

Keep in mind, that most of your symptoms seem to be in the extremities and neurologist start with the concept that "MS is a disease of the central nervous system (Brain and spine)."  It will be a slow process and you need to see about getting your symptoms under control.  Neuros are pretty slow to diagnose, so you need to be comfortable with the idea of treating symptoms.  

Talk to the PA about Baclofen or Zanaflex to treat the spasticity.  Also consider asking for Flexeril.  There are a few of us here that use Baclofen and add Flexril when thing get bad.  Concerta is a extended release form of Methylphenidate (Ritalin.)  I have used Ritalin, but I have had better coverage with Adderall (adderrall)  I stay away from the Extended release drugs because the "skirts" on the release curve.  I find 15 mg of Adderall (adderrall) twice a day works better for me during the day and I sleep better at night.

If the doc and PA are not working to manage your symptoms, then you may need to.  That is the best advice I can give you, but no sense suffering when you don't need to.

Bob

[Sparkysarah]

Hi

I just want to join Bob in welcoming you to the forum and to say I am sorry that you have been going through such a tough time.You are in good company and will find many who understand the sx you are experiencing, the frustration of not knowing what is going on in your body and the disappointment and anger at neuros who fail to take you seriously. (apologies to those great neuros who some of us are lucky to know!)

Something has got to happen and change in your life for things to improve and the bottom line is that you need fresh eyes to reassess all your case history. It sounds very worrying with the insurance not helping, but perhaps if you are able to get a diagnosis things may change.

Bob has given you some great advice and I would echo what he has said about at least getting medical treatment to help your ongoing symptoms. There is no need to suffer and even if you do not have a label to pinpoint what is going on, the symptoms can be treated.
You also need to take care of yourself which is not easy with a big family to look after..but perhaps the kids can help more (not sure what age they are though). Try and find time to relax and do something for you if at all possible. The other things is just simple lifestyle advice ..eat healthily and try and keep mobile and exercise where possible..even if this is just getting outside and wobbling on your cane carefully to get some fresh air!

You sound realistic about a possible diagnosis and I cannot tell you if you have MS..but you are certainly experiencing neurological sx which require further exploration.  I am sorry that you are facing so many hurdles to jump over at present, and pray that you can find a way forward that may move them and enable you to find some answers.

With best wishes

Sarah

[kerrtelli]

Thank you for your answers so quickly.  I am going to see a new physician hopefully this week.  Tomorrow i am going to pick up all the testing that has been done so far.  A few people have mentioned Lyme and although I have been tested, I am going to request further tests.  Either way I am hoping to get an answer so I can move on.  I will mention what bob said.  

My children are 12, 11, 8 and 3.  So they help.

Again thanks so much.

[kerrtelli]

I forgot to mention that my greatnaunt died of parkinsons disease.  I am not sure if that makes a difference but. Figured I would mention it.  I did notice that my left side is more weak than the right.  I am going to see a new doc and am searching for a neuro.  Like I said I know something is wrong.  I am not sure what they called the lesions I have to check the report.  I will post when I pull it out.  Maybe you can explain it for me.  I trust you guys more than any doc when it comes to telling me what you really think.  I just want to make sure o am on the right path.

What is neuro muscular disease?

Anyway, I am bringing my kids to church now and will research other illnesses you mentioned later.

Thanks again.

[COBOB]

NMDs include myasthenia gravis, CJD, muscular dystrophies, Parkinsons, MS, etc.  The problem with DR Google is the MS pops up when you type in the symptoms and these other diseases don't show up until the 15th or 16th page.  Many people never get past the first or second page and all they see on those pages is MS.

NMDs are kind of split into two groups:  Diseases of the Nervous System and Diseases of the Muscular Skeletal System

Bob

[kerrtelli]

Thanks.

[jen673]

I also have spinal lesions on my cervical spine.  From what I've read, lesions in this location mainly affect legs and arms.  I have numbness/tingling in my right hand and fingers and Lhermittes syndrome (shock-like feelings) run down the right side.  My reflexes however are off on the left side of my body.  I was just told by a neuro I have MS last week and getting a 2nd opinion next week to verify.  Both docs are MS specialists.  I have to get a brain MRI yet and evoked potential.  What is going on with you sounds very serious and I hope that you can get some answers quickly so you can move forward and get treatment to help.  Have any docs offered you meds to help with the pain?  I am on neurontin which helps to minimize the sensory pain.  I have children same age as yours and feel for you deeply knowing how stressful you must feel.  I will keep you in my thoughts and prayers!

Jeny

[kerrtelli]

Thanks so much for your post.  I am trying to find a new primary care doc because the physician assistant I used said is was way avoce his pay grade meaning I needed to go to someone with more knowledge and experience.  Today I had an okay day.  I noticed hen I don't walk too much my legs aren't as bad as when I am on my feet at work.  My husband helps a lot and I am very thankful for that.  I will ask new doc for meeds because the spasms are tough and my left leg doesn't work nearly as well as I my right.  I am going to pull out my original MRI and see if someone can explain it to me,  it was never explained if you could believe it.  Tomorrow i am picking up all of my labs and tests to bring to the new doc.

Thanks so much for your post.  How long did it take for you to get diagnosed?

Kerri