SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
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About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
520 members
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I have just joined MedHelp. I am a 43 year old mom of three. I was working full time as a registered nurse until November, 2009. I went out for a simple laprascopic hysterectomy. While out recovering, I began falling. Went to doctor, thinking I was a little anemic, but not that simple. Also developed severe syncopal episodes, (dizziness), but the 2 symptoms rarely occur together.
I have always had occasional ringing in the ears, however as the falling occured more & more, the ringing seemed to become more persistent. Now I live with a constant low roar. Sounds like wind from an open car window. Have been to ENT doctor, who diagnosed Menier's disease, which accounts for the severe dizziness, but does not expalin the falls.
I have been to 3 different neurologists, a cardiologists, family doctor, psychiatrist, and have had more medical tests than I can count. Attempted suicide due to developing severe depression. Along with the dizziness, & falling, I also have brief black out episodes. Because of this, I became a liability to work as a nurse, and was advised should not drive anymore. So I have lost so much independence, along with the symptoms.
I had a bad fall in 2011, resulting in herniation of lower lumbar disc causing sciatica to both legs. Had a microdiskectomy to remove herniation. This relieved the pressure to the sciatic nerve, but the falls still occur, and remain a mystery.
I have wore a heart monitor for a month to see if it was cardiac related, all that discovered is I have episodes of bradycardia.  I did the 48 hour EEG to rule out seizure activity.  Was tested for orthostatic hypotension, and was diagnosed but there isn't really a treatment, and I don't fall every time I change position, so I am in the dark. Because of the constant falls, I have chronic pain, stiffness, headaches, Had one doctor suggest I wear a helmet while out of bed. I am on medication for the depression, and the one attempt is enough at suicide, I came close to not being here.
Well thats my story in a nutshell.  There is so much more, but I won't ramble on.  If anyone has any suggestions, I will gladly welcome them.
1 Comment
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1530171_tn?1362547225
Hi darkangel1313 and Welcome to our group.

I'm so sorry about your situation.

With all your symptoms, I'm very surprised that Lymes disease,
was never suspect.

Neurological Lymes Disease would fit your medical history quite well!
Before that, since the odds of getting an accurate dx and treatment
are against you-I'm assuming you know about Lyme Disease controversy
in the conventional medical circles-you need to rule out some other possibilities.

Hypothyroidism type1 and type 2 (most MDs
and ENDOs do not check type2 , which is very prevalent) also
linked to many cases of tinnitus (which could be  itself linked to Ménière's disease)

Addison's disease, presenting orthostatic hypotension as on of the main clinical signs and hypothyroidism as another sign.

Babesia has Bradycardia as a clinical symptom, and is one of the Lymes Disease common co-infections.
Many Lymes patients' bradycardia has improved after 4 weeks of Doxycycline administration.

So going back to my earlier comment about Lyme Disease, the only way to
get to the bottom of all this , after you've looked into the other possibilities, to my opinion, is to find an LLMD (Lyme Literate medical Doctor) and get testing done ONLY at IGeneX Labs.
Your LLMD should ask for a complete Borrelia and co-infections panel.
Should you want to do more research, keywords are: ILADS, LLMD,
IGENEX, IMMED

The good news: If you have Lymes and /or co-infections, it's treatable.
The bad news: It's complicated to find an LLMD, get a dx and the treatment is "punishing" to say the least.

Please post again, to comment , to ask questions or to add anything.
You may also pm me any time.
Stay strong and don't lose faith.

I'm glad you joined. We're here to help and support each other.
Wish you well!
Niko

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