[]Introduction

[Guest guest]

Hello All,

This is my first time posting to this group. My name is Gaylen. My

doctors believe I have CMT & I'm about to be tested soon. I've been

living sort of a medical nightmare for the past 4 years that my doctors are

still trying to

figure out. What happened was I was given the drug Macrobid for a

simple UTI & had a severe neurotoxic reaction from it.

At this point I nor my doctors had any knowledge of me having CMT but

looking back my past medical history points to it. I had major

scoliosis surgery at age 15, I'm 46 now. Then I came down with peroneal

neuropathy & weakness in my arms & legs. This happened while I was

working as a printing press operator so we attributed the neuropathy

to chemical exposure.

Other clues were my mother & her brother both have neuropathy & my

son was born with a club foot which we had corrected. No one made the

connection. And when I had this neurotoxic reaction I felt like I

had been poisoned. It left me with global body numbness & weakness,

hemophilia and intracranial hypertension, 24/7 blurry vision & other

stuff we are still working out.

I want to warn all you ladies out there please do not take this

Macrobid medication ever, it caused such a neurotoxic reaction in me I don't

think

I'll ever be the same. For the intracranial hypertension my head has

so much pressure inside from a build up of cerebral spinal fluid that

I have to take 6 high dose pain pills a day.

It literally feels like my head will explode sometimes from all the

pressure inside. The pain meds hardly work on intracranial hypertension

so I'm basically on my couch sometimes 75% of the day which really sucks

but it's difficult to stand up too long do to pain.

The doctors think they might have to put a shunt or drain in my head

to control the fluid & pressure which I'm not to happy about because

they fail & often don't work right.

Anyway my point is this medication poisoned me & it's very dangerous

for people with CMT. Before this happened I ran 2 part time businesses,

landscape design & graphic design and had a pretty normal life, I'm also

an artist. I only had minor weakness in my arms & legs but now I'm

totally disabled. I've found the best way to deal with all the pain

is distraction or just getting to know others who are dealing with

struggles so I'm looking forward to meeting some of you.

Gaylen

You are not alone with !

Recent Neurocast Statistics show 50% of us have CMT Type 1; 20-40% of us

have CMT Type 2; 10-15% of us have CMT Type X; And 20% of us show NO family

history. For more

information on these and other statistics, visit http://www.neurocast.com

<http://www.neurocast.com> and click on 'previous sessions'.

Look for the title " Diagnosing Peripheral Neuropathies " .

is Charcot Marie Tooth Universal Services - for you, your loved ones,

the medical and scientific community, and anyone who wants to learn

how CMT/HMSN affects each of us through experiential sharing.