Seeing 2nd Neurologist Tomorrow. Undiagnosed.

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tracyne91
New Member


Date Joined Jun 2015
Total Posts : 13
   Posted 6/24/2015 10:37 PM (GMT -6)   
Hello folks. Old member, but can't remember username/password; however, I was on the Cardiac board then.

I have about 5 pages of symptoms ranging from widespread pain, knife cutting pain, electric shock pain, tendor skin, knee pain, lightheadedness, vertigo, pins & needles, tingling in extremities, muscle cramping, muscle weakness, muscle fatigue, brain fog, swollen lymph nodes from time to time, numbness from eye to ear - only one half of my pinky finger - bottom of foot by toes, constipation, symptoms that come & go like feeling like not emptying bladder but it went away, getting up in the middle of the night to pee, but that went away, cutting corners too soon and running into doorways, dropping things, involuntary muscle movement (thumb pulls inward into palm), feeling of ice running through veins, feeling of skin crawling, confusion (got lost driving in my own neighborhood and on my own street. Nothing looked familiar. Scary), itchiness, migraines, back pain, and on and on and on....

I was diagnosed with Celiac Disease back in 2012. Going gluten free alleviated some symptoms such as swelling in feet, legs, and hands. Then I got some bad cramping. Found fibroids on my uterus and that came out. Felt better, then the pain started. Diagnosed fibromyalgia by GP 9/2013 and then by rheumatologist 5/2014 after extensive bloodwork. Sent to neuro after that because of muscle problems. Had an EMG done (very quickly) which he said was normal. Had an MRI of brain and C-spine. Said C-Spine was normal (one I had in 2010 said I had straightening of the c-spine. I wonder if that corrects itself?). Brain MIR showed "subtle solitary focus of nonspecific increased flair signal intensity in right posterior parietal white matter." Told me everything normal, continuing taking my muscle relaxer. Everything is fibro.

Move to AZ and 2 doctors here want me to see a neurologist, again to look at my results. My new GP wrote on my health summary, "neurology referral - Abnormal MRI in the past; MS? Migrianes, memory loss and confusion, twitching". He said the pain management doctor I seen most likely wanted me to see a neuro also because of MS.

I have no idea what to expect at my appointment and really don't know much about MS, but I've been all over the internet this week. I feel something is wrong and they can't put their finger on it, so glad they are sending me off to see another neuro. But, a bit nervous as well. Just had to get that out there. Wish me luck tomorrow! How did you get diagnosed with MS?

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 6/25/2015 11:17 AM (GMT -6)   
Hi Tracy. I remember your story. I hope your appointment is with an MS specialist.

I was diagnosed after a severe bought of vertigo. It started out mild but after 3 weeks I was hospitalized because I could no longer walk without assistance. I was in the hospital for 4 days. They did an MRI. After a few weeks of various tests, I received an initial diagnosis of MS. I went to UCLA MS center for a second opinion.

The tests I received were MRI of brain, neck and spine. I also had evoked potentials (extremities, vision and hearing), lumbar puncture, blood work, and many neurological exam of reflexes and responses.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

tracyne91
New Member


Date Joined Jun 2015
Total Posts : 13
   Posted 6/25/2015 3:29 PM (GMT -6)   
They do have an MS specialists. I asked if I should switch my appointment to that person, but my doctor said to see this neurologist first. If she says it is MS, then make an appointment with the other neurologist who specializes in it. (in case it is something else). Made sense at the time.

I was there this morning. She said she didn't think I had MS, however she cannot rule it out yet. She said I don't have other symptoms MS sufferers have, such as major vision problems, blindness. I have one spot on my brain, but it could be caused from my migraines. She wants to repeat the MRI to see if there is a change, but said she would rather wait at least one year from my last one to do it. She wants to do another EMG on me. Last time I had an EMG done, it was my right arm and leg in August. She wants to do both sides, so wants both arms one day and do both legs another day. She also wants to do an EEG. So, I have 4 appointments. 1 EMG arms, 1 EMG legs, 1 EEC, and then f-up appointment. She ordered a lot of blood work. Some I just had done Friday lol - Vitamin Checks, Iron Check, Lyme, CPK, RPR, ANA, ESR, TSH (my TSH is always normal), muscle enzymes, etc. I just came back a little bit ago from giving up all my blood. So, for now, I have many tests to do and another MRI after August to see if there is a change in the brain MRI. I noticed she added to my "Current Problem List" on my chart "neuropathy-peripheral, muscle weakness, neuropathy". It sucks being a mystery.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 6/25/2015 7:54 PM (GMT -6)   
Again, it seems this new neuro isn't looking for or at MS. EMG testing will not show disease in the spinal cord or brain. I hope this doctor is familiar with MS.

EEG testing typically looks for things like seizures, injury, dementia narcolepsy etc. It isn't a test typically used for MS.

Migraines will cause brain lesions. Having migraine can complicate the diagnostic process.

Did this doctor do a neurological exam of your reflexes and responses? What was said about that?
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

tracyne91
New Member


Date Joined Jun 2015
Total Posts : 13
   Posted 6/25/2015 11:17 PM (GMT -6)   
She had me walk on tip toes, heels. Then, the push, pull, lift, etc. to give force against her. Reflex on knees, the vibrator thing on my foot, checked eyes, pressed shoulders, touch my nose with eyes closed, etc. Things I have done before at other office visits. She said everything was okay.

My old GP said same thing. My old rheumy said diffuse muscle weakness noted.

Would you go through these tests? EMGs are no fun. But, what if something else is found?
Would you make a 2nd appt with an MS specialist first, before doing these other tests?
Thirdly, are my symptoms sounding like MS to you? I am assuming all symptoms are different for different people and I could have this without having any type of blindness in an eye. Correct?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 6/27/2015 7:48 PM (GMT -6)   
I'd make sure you keep all records so you can see an MS specialist if no diagnosis is found. I would also ask about receiving evoked potentials testing.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

ela9050
Regular Member


Date Joined Jun 2014
Total Posts : 106
   Posted 6/28/2015 8:19 PM (GMT -6)   
Hi!
Your symptoms are almost identical to mine. I too thought I had MS. I did every imaginable test.
I think you have Lyme and possibly co infections. Lyme tests are so very unreliable. I wish I had known this two years ago. I now have horrible nerve damage in my legs.
I have debilitating peripheral neuropathy. ( This i found out is the main symptom of Bartinella, a co-infection of lyme. ) The pain in beyond comprehension.
After two years my Lyme test finally show positive.
If only.......but here I am a young mother of five children dealing with terrible damage to my body because no doctor was able to connect the dots.
No, I did not have the bulls eye rash, and I do not remember having a tick, but most people don't have either of these.
Go see a Lyme specialist. Go to the Lyme board to find a LLMD.
Two years ago I was in your shoes. A member from MS board said my symptoms sounded like Lyme. ( I had a different user name, but also forgot it and set up a new account a year ago, lol) I ordered the special Lyme test from IGenex (Special lab that can detect lyme) but never used it because then I thought I had lupus, and listened to my doctors who said over and over that i did not have lyme. I believed them and did not use the kit. I was scared that this whole Lyme craze was a way these labs took advantage of sick people. If only.....
Do not waste time, like I did !!!you have nothing to lose by trying Lyme treatment.
I wish I could go back to when I first felt the buzzing and tingeling in my legs and be able to do a re-start and do antibiotics right away. I get mad because I went to over 10 world renound neurologists and rheumatologists, and nobody was able to tell me that Lyme tests are known to be faulty. Some states require a letter informing the patient that just because their Lyme tests is negative does not mean they do not have Lyme.

Post Edited (ela9050) : 6/28/2015 8:16:58 PM (GMT-6)


tracyne91
New Member


Date Joined Jun 2015
Total Posts : 13
   Posted 7/2/2015 12:07 PM (GMT -6)   
Well, I am back from EMG of both arms. Yep, that sucked. She wasn't getting the reading she wanted on my pinky, I believe, and boy shocked me over and over and over in the same spot. I have a slight bruise there. She said the only thing she saw was a decreased amplitude. But, it's not entirely that bad. She said normal amplitude is 5.0 and I am 5.1. She said she would expect to see at least a 5.5 on me, so that is decreased but said she did not know why. I also asked about my lab results. She told me the only thing that came back was my Ferritin Level was high. I can't remember how high. (I just emailed them to see if they will send my results to me.) I think it was slightly over. Not sure. And my vitamin D was low at 29 and 30 is normal. I told her that is crazy because I have been taking 1000 IU of D3 a day for about 4 years now and I had the vitamin D blood work taken that exact same week for my GP and my number was in the 40s. Since taking the D3 supplement I have went from 17 to the 40s over a course of about 4 years. How I got a lab result from the same week at 29 is beyond me. Does my vitamin D drop that much if I was to accidentally miss a pill? Don't get it. So, today I will be Googling low amplitudes and high Ferritin levels. Hurray! In 2 weeks, I get both my legs done.

Gretchen1, thank you for taking the time to respond to me. I appreciate it very much. I always keep records, so no problem there.

ela9050, this neurologist actually is the first one to do a Lyme test on me, which she told me today came back negative. I will look check out the Lyme board. Thank you for your information. Did you have terrible migraines and spot on your brain, too?

Oh, I almost forgot. I checked my online health summary chart and my doctors put neuropathy and peripheral neuropathy on my problem list. Wasn't even told about it. Guess it means I have that?

ela9050
Regular Member


Date Joined Jun 2014
Total Posts : 106
   Posted 7/2/2015 1:46 PM (GMT -6)   
Hi Tracy,
Lyme tests are very innacurate. Order a IGenex Lyme test. I never tested positive till recently. Lyme surpresses the immune system, and therefore prevents the body from producing Lyme antibodies. I am only stressing this because I too did test for Lyme several times, and they were always negative. Only after building up my immune system was I able to get my body to recognize Lyme.

http://mylymediseasetreatment.com/lyme-disease-general/why-all-the-false-negative-test-results-in-lyme-disease-testing/

I wish I knew back then that Lyme tests are useless.

Post Edited (ela9050) : 7/2/2015 12:51:52 PM (GMT-6)


tracyne91
New Member


Date Joined Jun 2015
Total Posts : 13
   Posted 7/22/2015 3:09 PM (GMT -6)   
I had the 2nd EMG done on my legs. I was told that was normal. So right now after 2 EMGs, all I have is lower amplitudes in my arms for unknown reason. And the high Ferritin level. The reference range for Ferritin was 9-120 and mine is 340. I got a copy of my lab results so I could see it. I checked the Lyme test. I had one reaction to one of the proteins they tested. There was a note that said you had to react to 5 of them and 2 of the other set. That I know of, have only been bitten twice. Once when I was about 6, so that would definitely show up by now and once after all these symptoms had already started. But, I will keep having it checked. The worst thing I have going on lately is still lightheadedness, headache/migraine, and nausea. I have an appt with my GP this Friday. I have an EEG on August 11th, then a follow-up with the neuro. We will see.

tracyne91
New Member


Date Joined Jun 2015
Total Posts : 13
   Posted 9/18/2015 4:51 PM (GMT -6)   
Well, I had my EEG done. She said it was completely normal, but I am in the middle of getting copies of all my tests now to see for myself. Sadly, I can't trust her saying "it's normal" when she said that about my blood work, which was not. High Ferritin and my EMG, which also was not. She told me during the test my amplitudes were low in my arm, but she didn't know why. She contradicts herself.

Anyway, I saw her again and she sent me to get another MRI of the brain and c-spine since it has been over a year.

In the meantime, I told my GP about the high Ferritin. He sent me to get a hemochromatosis gene test, which came back negative. Rechecked my Ferritin, which was still high and sent me to a hematologist. National website said over 150 was a danger zone. I was 340 and then 321 twice. The hematologist says, "Well, you don't have hemochromatosis. Your Ferritin isn't that high, it's not going to cause organ damage or anything. Well, it is high, it's 3 times the normal amount. You could donate blood, but you don't have to, but it might be good in your case. You don't have to change your diet, but maybe you should just avoid supplements with iron in them. You don't have to do anything, but if you are really freaked out about it, I can schedule some phlebotamies for you."... ridiculous. I guess I have an abnormal processing of iron. I have no idea. But, I know I have fibro and I know it can be misdiagnosed with hemochromatosis and I know you don't have to have the gene to have it. dead end.

Next, had MRI done Monday. Got test from radiologist so I didn't have to go back and see Dr. It says c-spine is normal and the one lesion I had is less visible today than it was last year. I guess that's good news. If it was from age or headache, would it be disappearing? I guess I'll have to go back to neurologist for last appt. to see what she makes of all this. Last time I was there, she had no answers for me.

I checked my online chart to see what was in there and she wrote MS on my problem list the day she sent me for an MRI. Maybe so the radiologist would read it better? Would she say I have this without more lesions or before knowing if I do? I've read stories of others with MS without lesions on the brain, diagnosed only by lumbar puncture. I have no idea. I'm lost. I have Celiac Disease, Fibromyalgia, and now an Iron Overload (but not hemochromatosis).
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