A friend needs help

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A friend needs help

Postby m15 on October 3rd, 2007, 7:51 pm

Hi Everyone,
I wanted to harness the collective wisdom of this board for a friend who has a few troubling symptoms but is undiagnosed. She most definitely does not have BFS because she does not twitch at all. Her primary symptom is dizziness and loss of balance when walking. This does not happen when she's driving. She's about 40 years old and a mother of two boys. She has been tested by a neuro and ** has been ruled out because of negative MRIs and spinal tap. Do you have any suggestions for what kind of doctor she should consult next?? At this point she's being told it's psychological and that really upsets her because it's so real. She's also been to a balance specialist. I know people on this board are afraid of finding out about new diseases (including myself) so you can PM if you like.
Thanks for your help, I appreciate it.
m15
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Postby SuziQ on October 3rd, 2007, 8:10 pm

Hi there,
I actually know of a friend of a friend who developed a vestibular disorder from taking Cipro (Fluoroquinolone,) and went to a specialist in NYC who retrained her to walk via vestibular rehabilitation.

I can't imagine why no one has at least suggested vestibular rehab?

Vestibular disorders are quite common and can be caused by inner ear conditions, viruses (I had a high titer of coxsackie B and balance problems were one of my worst complaints in the beginning,) toxicity, certain medications, tickborn illnesses, tumors, etc.

I would suggest an infectious disease work-up to rule out any infectious cause, but also a vestibular specialist so she can look into a rehab program. Some are not covered by insurance, (unfortunately,) but they can be very effective.

Hope this helps.

Blessings,
Sue

ps-Did she have a really good quality MRI with contrast? If she didn't go to a major university medical center or to a facility with the newest technology, she may want to pursue a second opinion.
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Postby Chris swl on October 4th, 2007, 11:20 am

Hi
I will go with Sue on this one. The inner ear has a lot to do with ballance.
My son was tought that the ear was verry important for balance while doing his kickboxing. It has three of the smallest bones in the body. Malleus,Incus and Stapes (Hammer,Anvil and Stirrup) and has a type of fluid spirrit level in it, if that make sence.

Any disruption/injury to the ear can effect the ballance.

Good Luck
Chris Sewell
Good luck to all with BFS/BCFS
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Postby lotsoftwitch on October 4th, 2007, 12:38 pm

I struggled with this problem early on with BFS. I think it was either anxiety or a virus - that then led into BFS.

She should distinguish between vertigo (room spinning) and off balance. Vertigo is usually inner ear related and can be from Meniere's disease.

Great that she has the MRI to rule out tumors and **.

Could be a simple virus - they can attack the balance nerves. Interestingly, after a time you body can re-route signals around the affected nerve and the problem resolves.

In addition to the other suggestions, I would suggest an ear, nose and throat doctor (ENT). they deal with this quite a bit. They may order an Electronystagmogram (ENG), which evaluates the functioning of the brain, eyes, nerves and inner ear as it relates to balance - it's lots of fun. They pour cold and warm water in your ear. Feels really weird.

Hope your friend feels better.

Scott
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Postby DoubleD on October 4th, 2007, 4:25 pm

M15,

After reading your post I remembered I know a lady that goes to my church that has struggled with very similar symptoms. What she has is called Endolymphatic Hydrops. It is a inner ear disorder. It can be caused by a virus that attacks the inner ear, trauma to the head, or genetic. Anyways she struggled with it for 3 years going thru test after test. She said your friend needs to see a Neuro-ologist( 2 words) Ent's may not know about it. Let me know if you need to contact one because I have a number for one in Portland Oregon. Hope this helps.

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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A friend needs help

Postby m15 on October 4th, 2007, 6:50 pm

Thanks so much for all your responses. I will pass this information on to her.
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Postby Slavin Balen on October 5th, 2007, 11:26 am

DD: Endolymphatic Hydrops meaning Morbus Meniere, Meniere's Desease or Meniere Syndrom!?
What I know about MD that person does not have it. MD is sudden impact, vertigo, nausea. Duration is from 5 minutes to hours, days, even weeks. One ear is always affected. In 30-35% it spreads to another ear in next months or years.
I think Chris and Suzy got the point.
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Postby DoubleD on October 5th, 2007, 12:45 pm

Slavin,

Only going by what she told me. I have seen her. She has struggled everyday for years with dizzyness and balence. Still does. I was only trying to help. I did not know you were a ENT.

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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