My experience so far..

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My experience so far..

Postby Hyperexcite on February 29th, 2012, 3:07 pm

Always suffered from panic attacks, mainly driving motorways and social anxiety. But have always tried to plod through those attacks. Met my fiancee, had a child, mum dies unexpectedly, then another child straight after, then fiancee diagnosed with stage 4 rare non hodgkins lymphoma, he has chemo and then chemo again, then my dad dies, then my fiancee has a bone marrow transplant. A couple of months before bone marrow transplant I had a colonoscopy and strangely I started twitching literally 2 days after that. And it's never stopped since. Everywhere, anywhere and it's now about 8months. After nerve tests, muscle tests and bloods I have been told I have PNH. I have to go for a CT scan Tues. Otherwise been told to see how it goes. Consultant suggested Baclofen if things got unmanageable. But that stuff sounds scary! I am on amytriptiline low dose. Now, I'm getting painful cramps mainly calves and feet. Twitching is continous. Wakes me up in my sleep. The stomach ones really get me.
Right now, I'm exhausted, completely fed up with the twitching.

Anyone used Baclofen? I can't afford to be drowsy with two little ones. And things the way they are.. Anyone else here with PNH? Obviously stress and anxiety has a huge part to play... And the ALS worry had that and still do.. But recently had a bit more reassurance on that from a member here. Life is just not fun sometimes.. Phew!
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Re: My experience so far..

Postby plainslady on March 1st, 2012, 10:10 am

Wow, you've been through so much the past few years. Adding tremendous stress to preexisting anxiety is a recipe for disaster. I've never been given a firm diagnosis of BFS or PNH, but I do have fibromyalgia which shares many of the same symptoms. Lots of twitching off and on, lots of muscle soreness and cramps at times, lots of sensory issues and pain. I too have dealt with persistent anxiety attacks and generalized anxiety since I was a young child, which has no doubt messed with my nervous system in ways I can't imagine.

I do take baclofen, and prefer it to Flexeril because it doesn't make me spacey. I can't function on Flexeril but the Baclofen doesn't effect my ability to drive or stay awake for that matter.
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Re: My experience so far..

Postby Southern on March 1st, 2012, 10:18 am

What is the main difference between PNH and BFS? I had assumed, through reading, that they were basically the same. Is there an objective standard, say something found in an EMG, or a set of symptom that distinguish the two?
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Re: My experience so far..

Postby chicagobfs on March 1st, 2012, 11:49 pm

I'm so sorry that you so many bad happened in your life:( I never took baclofen but I read good thing about it. There is few people on te forum that take it, maybe you can contact them and ask questions. I do take flexeril before bad :) usually low dose 5 mg
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Re: My experience so far..

Postby Hyperexcite on March 2nd, 2012, 4:22 am

Hi. Thank you all for responding to my post. I would have replied earlier but its not always easy to get a spare 5 mins to sit down.
Thats reasonable feedback on Baclofen then. I will take your advice and ask around this site because I am still weary of taking it. Don't like anything that makes me feel spaced out. However, my twitching is really bad atm and I cant sleep very well at all. Im getting more regular cramps these days as well. So maybe need to try something else. Thanks for the input Plainslady and Chicagobs. Does anyones spine feel stiff and sore? I get that regularly as if my spine is really bruised. Im sure its all the anxiety but its so hard when you get the twitches, pain, strange sensations - then worry - then get more! Im stressing about this CT scan now as well. Once had a MRI and had to press the 'panic' button to get out of it, only managed 15mins. Ugh.

As for PNH/BFS I was confused about that too Southern. I had to ask on this site. If you look at my first post it asks just that question and some people here tried to explain it to me which I appreciate. From what I can gather, PNH comes under the umbrella of BFS but there is more a diagnosis in that something in the bloods indicate PNH something to do with antibodies or something. Unfortunately, when I met with my consultant and he told me I had PNH I did not ask any questions was just so relieved that my twitching had been picked up on. Strangely, the consultant said my bloods were fine and I left it at that. But now I am assuming something was different about my bloods to be able to make the PNH diagnosis. As from what I can understand you cant diagnose PNH from the nerve/muscle tests? Oh, Im still confused too. If I hang around this site hopefully I will understand it better! I have my CT on Tues so I am assuming there will be a follow up appt where I can ask these questions to my consultant. I was surprised I was even getting a CT scan as I was told they would just 'watch and wait'... Thanks for the feedback everyone.
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Re: My experience so far..

Postby plainslady on March 2nd, 2012, 10:49 am

Just wanted to follow up on your question about stiffness and soreness in spine. I always joke I have an eighty year old back. Sore, stiff like a little old arthritic lady. I know what you're talking about.
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Re: My experience so far..

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