getting no where

[maunalii]

I am a preschool teacher and have been out of work since March 18. My situation began back in January when I began to have problems with foggy thinking and lacking the ability to concentrate. My stress level was no higher than usual. As a matter of fact, it was less than usual. I had only 1 class to go to graduate with a Bachelor's degree. The 1 class was in early childhood education so I was very confident in completing the class. In late February/early March, I began to have tingling in my face, lips, and arms. I would wake up and it felt like someone had been sitting on my arms. My left side was predominately weaker than my right. I have stabbing pains in my left shoulder, shoulder blade and down the front of my arm. If I lightly scratch my face, it feels as if I am digging my nails into my skin. I cannot tolerate water hitting my skin in the shower. It seems that heat and direct sunlight intensify the tingling. In early April, I began to have bouts of vertigo. I wake up feeling dizzy every morning. I have a hard time sleeping and the fatigue is pretty severe. In mid April, I woke up to the feeling of my big toe in my right foot tingling. Actually it began to spread and it felt like there was an electrical current running through my foot. It has since spread to both legs.

I have two types of insurance. The first primary care doctor told me I was allergic to something. So I went to another doctor. He felt it might be a pinched nerve. I had my eyes checked also. That test came back cleared. I was tested for rheumatoid arthritis, Lyme disease, Lupus and strep. I also had many other blood test to check my thyroid, B12, and various other things. All is normal. Went to a neurologist who began treating as if I had a pinched nerve. Xrays and MRI of cervical spine came back clear. Neurologist told me I had fibromyalgia when I told him none of the 4 medications he gave me were working. He started me on Savella. No change so I went to get a second opinion from another neurologist. The outer part of my right leg from my knee down to the top of my foot went numb. I shared this with the new neurologist. She totally dismissed everything I told her. She did some simple muscle tests, told me to stop keeping a journal, only do soothing things and not to talk to anyone about MS. She ordered an MRI of my brain. That was done on May 27. I am still waiting for the results. Contrast was not used. The test was less than 20 minutes. My husband was surprised.

My legs feel weak and like they are going to give out from under me. Sometimes I have to wait a few seconds when I stand up before I begin to move.

I have a friend who has MS and another friend who has fibromyalgia. Both have encouraged me to continue pushing the doctors.  

My question is this, if my brain MRI is clear, what other options do I have? I am not convinced that I have MS. My sister-in-law who is a nurse feels that it is not MS. But I have read many stories about how some people have had a difficult time getting someone to listen to them. One professor from school lost her husband to MS and she encouraged me to keep pushing. How far do I push?  I am one who thinks the doctor told me in a round about way that it is all in my head.

[supermum_ms]

I too am thinking a dr who doesn't want a patient to 'understand' the sx they live with is considering the problem to be psychological and not physiological. Telling you "to stop keeping a journal, only do soothing things and not to talk to anyone about MS" would be one of my red flags for the mindset of the neuro. Unfortunately if that is on their mind from the begining, it can be difficult to get out of the box you've been put into.

There is some truth towards the negativity of journals etc they can inadvertantly keep your focus on things that you'd otherwise be able to slot into background noise of your bodies rumblings. If the person has a mental health issue, this becomes a bigger problem because they can become so overly focused on sx that they can't function, eg the headache becomes fear of a brain tumor. Or they read about a sx and then start to experience that sx, read about another sx of a disease and get that sx and so on.

The oppisite of this is the person who has a health problem and is trying to understand it, not fear it and to have comprehensive information to aid in their diagnostic journey. The majority of people fit into this side of the equation but a lot of doctors still dont like or recommend that their patients do this. If you ever feel what is important to you is being dismissed by the doctor, it probably is and it would probably be better if you found a doctor who doesn't make you feel this way.

Good luck............JJ  

[LivingInHope]

EMG (electromyelogram) reveals the muscles' electrical activity.  It's frequently done in conjunction with a nerve conduction study to give a better picture of what is going on.  May I suggest you contact the facility that conducted it and find out how you can obtain a copy of those results?  

It pays to be pro-active in getting copies of all tests done relative to your symptoms and to keep them organized in a notebook.  And pics taken of anatomical structures are generally all digitalized now so you can ask for your own copy of a CD with your pics on it.  You just want to be sure when you take these CDs to specialist, that you let the doctor know you want to be sure and get it back.  That way, you won't have to pay for getting yourself another CD.

So, you have not yet seen an ear, nose and throat doctor to get vestibular testing in regards to your vertigo?  If not, I'm surprised no doctor has steered you that way for testing about it!

I think there may be doctors out there, when they don't know what it is, just chalk it up to fibromyalgia.  Not enough positive trigger points would seem to bear out your new neurologist's point of view on the fibro.

The doctor that didn't want you to keep a journal sounds like they felt you were an anxious person and that documenting, rather than being productive, only made you more upset.  But not knowing what is wrong with you and wanting to find out is what I assume is driving you to keep the journal, in hopes some doctor will be knowledgeable enough to be able to figure it out!

Have you had an MRI done of your shoulder since your fall?

[opie74]

I would definately get a copy of all lab results and the results of the MRI.  If you don't want to mess with the dr for the MRI results, You can get a copy from the fracility that did it for you.  Take all of the results and get another opinion from a new PCP.  I know this is not what you want to hear, but many of us were bumped along for years.  Get you results and keep them.  15 year old films compared to new ones is how I got my Dx.  I pray that you find the cause and get some releif soon!  Even if it is not MS, keep us updated!

Ann

[HVAC]

If it were me I would first get a PCP I can trust. Your symptoms could be a lot of things although you have had blood work to rule out many. If the MRI is clear this Neurologist will probably want to drop it. If you find a PCP you like they may refer you to another Neurologist. Neurologists Specialize and if it is say a head ache specialist they may only look for headaches.

MS is not a fast diagnosis it follows the MCDonaold Criteria which you can read about in the health pages up at the upper right of your screen. It is a complicated diagnosis of excluding all possibilities. It is common for Neurologists to follow you every six months sometimes for years until you fullfill the Criteria or they find another cause. No test rules MS in or out. They are part of a complicated puzzle.

Neurologist can tell more from the general Neurological exam also in the health pages than they can from an MRI. From your reflexes etc., seemingly simple tests to us they can tell if you have Neurological damage and where it is.

You always have an option of going to another Neurologist or other Specialist until you get an answer. The problem is to stick it out unfortunately it take patience and stamina.

For me it took many years. I was confused and thought I was being dismissed but this is just how Neurologists usually work.

Ask her if she thinks there is anything Neurologically wrong with you. If she says no it is a dead end at least with this doctor. A good PCP can tell if you have something Neurologically wrong by doing your reflexes etc. If that is the case you need to be referred to another Neurologist. If no one sees anything neurologically wrong it may be you need another Specialist. Which I can't say not being a Doctor.

I wish I can give you a better answer. I felt like Alice going down the rabbit hole.

Alex

[maunalii]

I tried this earlier and could not tell if it posted or not. In response to your questions, here's what I can tell you. I am not sure what an EMG is but I did have a nerve conduction study done on both arms, hands and right leg/foot. Was never told results. I have since transferred to a new neurologist. New neuro said no to fibromyalgia because I do not have the trigger points even though there is one on my shoulder. I fell back in January and my shoulder may be a separate issue from my other symptoms. I had the ANA test twice. Negative. I had vertigo before back in 2005 - cause unknown. This feels the same. Sometimes when I am sleeping and I go to turn over, I feel the spinning sensation. I have not had any MRIs of my lower spine yet.

How much pressure can I put on my doctor? It is irritating me that she said not to keep a journal and to do only soothing things. Uh, then what?

[LivingInHope]

So have you ever been able to get an EMG done of your legs?  That's a shame they didn't order the MRI with and without contrast.  

A number of the symptoms you describe remind me of a sibling I have diagnosed with fibromyalgia.  The brain fog, the legs going out from under, the trouble sleeping.  Were you diagnosed with fibromyalgia based on the number of positive trigger points you have as well as symptoms?  Did you only get an ANA test to test for auto-immune problem?  I don't know why it is, but my doctor recently told me it wasn't a very good test.  I asked for it in relationship to my P.O.T.S..  My sibling had an MRI of the brain which showed only a small bulge in a blood vessel, but from that, they got an MRA/MRV to take a closer look at the blood vessels (it involved dye).

Regarding the waking up feeling dizzy- since you describe it as vertigo and not light headedness, have you been to an ear, nose and throat doctor to get vestibular testing?  Since you are having electrical feeling in your foot, have they taken any pictures of your lower spine?