LONG Week and confused as ever!
 

Hi guys,

I have taken some time off from the forum and am happy to have the strength to get back on today and update you guys, get some insight, and talk about my recent appointments.

Sorry for the delay, this past week was just a rollercoaster of emotions and symptoms for me! I have had pretty severe neck and spine pain that was likely brought on by being in the car for extended periods of time this week. I forgot how bad that made me flare! I can feel every break in the gas and every curve throughout my spine....

So Monday I had my first visit with the neuro. Phew....that was quite the disappointment!!! Still recovering from his lack of empathy and arrogant attitude, but I'll move on and get to some positives. He said there was no neuropathy (He must have decided this due to the short physical exam and explicit placing of me in categories such as "you are too young" "you look so healthy" "you must have tense muscles from lack of sleep"). I have had plenty of sleep, it's just the problem of getting to sleep. I am either in pain or my feet and hands are on fire, causing me to drift off in the wee hours of the night. He did not talk about any of my symptoms, nor would he even let me explain any of them. I thought this odd, but then again all docs are different.

He went on to tell me this was related to my cervical spine. He looked at my brain MRI, agreed it was normal but also said I had a very straight neck and this could be causing some of my problems. Mentioned it could be spinal stenosis, I do not disagree. But he also rudely said that muscle relaxers should "fix" me in FIVE nights, yes FIVE. What a JOKE. Prescribed me to the muscle relaxers, scheduled a MRI for five weeks later, and sent me on my way. I made sure I explained I was exposed to ticks the two summers prior, so he also ordered blood work for RMSF(rocky mountain spotted fever) and another infectious agent I cannot recall off the top of my head. I was pleased with this. He also did labs for zinc and copper.

In the meantime I scheduled an appointment with my primary. What do I do? Set around for yet another month feeling helpless and that I am not actively doing anything to improve my condition. My primary was great with me. He ordered me and EMG/NVS that will take place this Wed! WHOO HOO! He is still thinking PN. I am just so confused!! He did prescribe me to a steroid pack, which helped my neck pain in the past. It is not ideal, but I am willing to do anything at this point to get some relief.

Zinc and copper=normal. Bombshell news on Friday evening: The neuro office called me letting me know that my bloodwork for the RMSF came back either low low positive of high negative. I was so shocked that I wasn't comprehending clearly. They want to retest in two weeks. I will call my primary in the morning to see if they can order me the test and I should probably follow up with the neuro with more info on my result. I am very scared about the RMSF because if that is it, I have gone anywhere from 6-10 months undiagnosed. What are the repercussions of this? Has this moved into my nervous system? If anyone has additional info on this please please share!!

If it has caused PN will this show in the EMG/NCS on Wed? Will the stenosis possibly show in the EMG/NCS? I may want to share this story with other support groups, so if you have suggestions please send my way. Thank you all so much again for your continued support through all this!!

Sincerely,
Emily

EmilySH

Thanks for sharing and glad you got into to see the neuro. My neuro also told me I didn't have neuropathy after my nerve conduction study and EMG but I guess that's cause there's no damage? I guess it's a definition thing but I'm not sure. My neuro didn't question I was feeling sensations from my nerves though.

Yep some docs aren't the best people persons but it sounds like he is doing some level of investigation. I hope things get better for you. I'm laying in bed cause my left foot is really bad today. Camping trip and whole bunch of physical activity this weekend.

Hi Emily,

I am sorry you have found yet another arrogant and uncaring Neuro. I don't know what is wrong with this discipline that it attracts such antisocial types. All those I have seen have agreed I have many neurological issues, but fail to address my questions or concerns and are off-hand. Perhaps because they are often forced to rely on side effects of meds for other conditions to treat the symptoms they see they feel inferior.

Whatever, I hope with your test results you begin to get some answers and the correct treatment.

Dave.

Hi Emily,

Sorry your appoitment was disappointing but I AM glad they pursued that blood work for you. It is good they are re-drawing it in two weeks. I am wondering if the steroid pack will have any impact on the results? Sometimes they can jack up your bloodwork, inflammatory markers, etc. Don't know if antibodies get affected. Probably worth a phone call Monday, especially before you re-draw if there needs to be a waiting period....

Let us know what happens and hang in there. Those days of waiting for results can just be poop! Be extra kind to yourself this week.
Sending Healing Love, Littlepaw :hug:

So sorry Emily.
:grouphug:
I feel there are so many age and gender issues with unusual illness.
Kinda like another assault with having to "prove" you are sick.

Up until my illness, I had NEVER been questioned as adult.
Since, I have been called anxiety ridden, a liar, and menopausal.

I wish I had not wasted so much time with my neurologists.

I am glad that your primary is good.
The folks on this board told me what I had long before my positive skin biopsy.
I am SOOOO thankful for neurotalk.

By the way, SEVERAL well known, famous NEUROLOGISTS told me that I did not have neuropathy.

Hope you are better soon!

I have also been told that I don't have neuropathy. It seems that many neurologists just go by the physical symptoms found during their basic neurological exams, and tests such as EMG and MRI. Of course, for the most part, these exams only show things that indicate motor neuropathies. Do they not consider sensory neuropathies/SFN to be "real" neuropathies?? Perhaps because they primarily cause pain and may not result in physical disability??

I sure hope you can get some answers soon.

Emily sorry you've had a rough week but hopefully with your test results you might now get taken seriously - finally! I know the feeling of being disbelieved and ignored and I'm glad for you that you found the strength & resolve to keep pushing for answers.

Unfortunately I can't give you any info on RMSF - not something we have to deal with where I live. Hopefully someone on NT will come along and be able to help out.

Thanks also for yet another 'heads-up' about terrible neurologists. After waiting 5 mths I at last have my first appt. in 3 weeks time. Still not sure what approach to take - especially as my health deteriorated so much during the waiting time that I had to take matters into my own hands and get private testing done. Your experience along with others makes me reluctant to let on that I've been researching and I'm trying to keep expectations low.

Keep strong and let us know how you're doing.

Theres probably hundred causes of neuropathy that cant be tested with our current understanding of neuropathies. I think alot of people confuse neuropathy with "depression", anxiety, issues, as you seen in this site, that is not the case. diabetes, injury(to the head) seems to be the most common, the most uncommon are something like sfn, autoimmune,cancer, which are not easily diagnosed. neuropathies are not easily diagnosed because, there many parts of your nervous system is involved, sometime like a disease or defect in a brain that results in neuropathy in your peripherial nerves is not easily "connect the dots", as direct damage to nerves is easily seen.

What I can say from experience is you can have 5 different neurologists do an EMG/NCS and get 5 different results! These tests are subjective. If you can, get a second opinion and testing done at a large teaching hospital. They tend to see the most variety/severity in diseases and have the most experience.

NEW Update
 

Hi guys,

Thanks for all the replies and words of encouragement. This morning I got the call from my neuro office that I did test positive for Ehrlichiosis. I immediately got in with my primary to begin treatment. I will start with a two week dose of Doxycycline. I am relieved to hear that this can be treated, but my primary doctor still does not believe everything is adding up given all my neurological symptoms. Obviously I have presented this disease in different ways than most. Besides one day back in Dec. of possible fever, chills, and nausea, I was perfectly healthy until Jan 26. How did I have this for so long virtually symptom free. I am so confused!! I must have a good immune system? Now it is compromised and attacking itself? I am not familiar with infectious disease whatsoever. Let the research begin!!

I now, of course, am going back in my head and starting to worry about LYME now even though I recently tested negative on the western blot. I was encouraged to go on with the EMG and NCS this Wednesday and the MRI on June 2. If anyone has had experience with Ehrlichiosis please send your story my way. Thank you so much again for all your continued support! It has been a pleasure communicating with this wonderful group of true fighters!

Emily