Waiting for neuro appointment

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Nov 2017
Total Posts : 2
   Posted 11/8/2017 5:05 PM (GMT -6)   
I’m a new member but have spent the last month or so reading posts.

I am a 49 year old female.

So here is my history to get to where I am today. Sorry for the length in advance.

Approximately 19 years ago I was diagnosed with shwannomas (benign tumors in the nerve sheaths of both legs). They were removed.

Approximately 18 years ago I was diagnosed with pernicious anemia and take B-12 IM and the levels have been normal since. My symptom free normal is about 100 about the clinical lower limit. There have been a few times where I missed a monthly dose for one reason or another and I can always tell because I get lumbar pains that will go away after doing a loading dose of B-12.

about 5 years ago I had severe pain down my legs. I was curled up in the fetal position crying in pain. Alleve did nothing. Decide to try acupuncture. My husband actually carried me in because I couldn’t walk. She was amazing. I had improvement after a visit and better within a couple of weeks of visits. She was an MD in China and said she thought I had fibromyalgia.

My iron was severally low and I had infusions about 2 years ago to get to a normal level.

I also have a thyroid nodule that they don’t want to remove. He says it is small and not the reason I complain of not being able to swallow and having a lump in my throat. Thyroid function was and is normal.

In the last two years my vitamin D was found to be low (19) but kept falling (lowest 11) until 6 months ago. I was taking a multivitamin. 6 months ago I started spending 30 minutes in the sun without sunscreen. Two months ago I started liquid vitamin D 5000 IU and my level is up to 28.

For a least a few years I have had a stagger when I walk. The drunk walk.

about a year ago my vision changed almost overnight and my eyeglasses prescription quit working. In the morning I cannot see for a few hours. My eyes feel too swollen inside to see. My right eye has a fuzzy vertical line like there is a dog/cat hair (there’s not). I having stabbing pain in both eyes. Sometimes it is a quick pain other times it last for several minutes. This stabbing pain has only been the last couple of months. And I’ve had three bouts of double vision that lasted for a few hours each in the last two months. The ophthalmologist saw what he thought was sat tissue a month ago. So knowthing that the PCP thought MS was a possibility sent me to a neuro-opthamologist (I think his correct title). He was amazing, best bedside manner of any doctor I’ve seen in years. He spent over 2 1/2 hours. He doesn’t think the double vision is an MS sign because it only lasted a few hours each time.

I took my first fall in July of this year. Nothing broken thankfully.

In the last 6 -12 months my memory has gotten worse. Both long and short term. This impacts word recall, places, people, completing tasks, and a couple of times I forgot how to get Home for a few minutes while I drove around).

I stop talking in the middle of sentences.

Use the wrong words but at least the right subject (called the trashbag the throw-away bag the other day).

Since the beginning of September I have had arms and legs that feel jelly. As if I had worked about really hard and over used them.

I’ve been havin g pins and needles in both legs. Usually from a few hours to a few days at a time since September.

I have a cell phone buzz that randomly goes off in my left thigh.

Lack of sleep from the pain is getting really old really fast. But the fatigue is immense. I need a nap by the time I finish a shower. Then I teach a class (university professor) then take a nap for a couple of hours.

My Lyme test has come back negative. I insisted on a Lyme test because a couple of years ago I had a tick attached but dead for 6 months. Happened not once but twice. It looked like a mole.

My PCP order a brain MRI w/o contrast and it was normal. Before this PCP says I think you may have MS. After he says he still thinks I may have MS or a rare neurological disorder. He said there were drugs he could try but doesn’t want to alter N.Y. symptoms before neuro appointment.

No over the counter pain relievers help.

My neurologist appointment is the Wednesday before Thanksgiving.

Thank you for reading.

So does anyone have advice? Can you see overlap with my symptoms and yours?

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 11/10/2017 10:48 PM (GMT -6)   
You have a lot going on! I'm sorry! I hope you get some answers soon.

You should post on the Lyme board. It's quite common to get a false negative.

The neurologist will be able to address the possibility of having MS with a clear MRI. I can happen, although it's quite rare.
Diagnosed with MS July 2006, Celiacs 2012, RA January 2017

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

New Member

Date Joined Nov 2017
Total Posts : 2
   Posted 1/6/2018 9:07 PM (GMT -6)   
Clear LP. Definitely not MS or Lyme or GB. about a dozen hemangiomas on the thoracic and lumbar spine but the radiologist wasn’t concerned. Radiologist (a friend) really thought it sounded like MS but is confident it’s not suggests a muscle biopsy and nerve conduction study. Going to a new neurologist next week. But PCP says I need to be prepared to go to Mayo Clinic. Has anyone been? Thoughts? Thanks.

Regular Member

Date Joined Sep 2017
Total Posts : 415
   Posted 1/12/2018 4:01 PM (GMT -6)   
I thought I had MS too. I also had a negative interpreted Lyme test, but indeed I did have Lyme. The testing for Lyme is all jacked up. They are using 'surveillance' criteria for diagnosis. Surveillance criteria is supposed to be for case counting only. So when a negative comes in it means - no this test should not be counted in the database- . It does not rule out infection.

I agree with Gretchen. You should come post over on the Lyme board
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 18, 2018 8:18 AM (GMT -6)
There are a total of 3,004,238 posts in 329,124 threads.
View Active Threads

Who's Online
This forum has 161731 registered members. Please welcome our newest member, gfdag8966988888@outlook.c.
197 Guest(s), 10 Registered Member(s) are currently online.  Details
OzLyme, PeterDisAbelard., PDL17, Oligodar, getting by, mareish, ddyss, franko63, Mamatomypeas, straydog