Receiving Bad News from GP

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RainCat

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Just seen my GP after having an MRI 6 weeks ago and my first EMG 4 weeks ago. MRI head was fine Lumbar was bad as bulging disks, herniated disks, Stenosis and Spinal Dehydration was all mentioned.EMG.... upper and bulbar fine....the bad bit Lower right leg Denervation renervation and fasics all present and talks about evidence of motor neuropathy.Obviously not the best news but i feel more in the picture ....I have to go to the next Neuro out patient appointment who may share me with the orthopaedic team To say my Lumbar spine is a mess i dont got any pain :LOL:
 
BOOOO for not only the best news! :mad: When do you go back...and is it to the same Doctor or is he sending you to someone else?No pain is always a good thing...so at least one good thing right?**H's & K's** Hun....~*~Amy~*~
 
Raindog,You were the first person to ever respond to me a year ago when this all began so I have a great deal of affection for you. I look at your info in a positive light. Twitching itself is evidence of motor neuropathy although I know it does not have to be. Motor neuropathy is not necessarily a life altering issue. Lots of people have it for lots of reasons. It sounds like the MRI findings might explain a lot of the other findings. As you know, I also have evidence of denervation/reinervation but from a biopsy not EMG. When this finding came up it just confirmed that "something" was going on and I wasn't making up my symptoms and they weren't caused by anxiety or need for attention. The finding did not alarm my neuros or at least they did not communicate any need for alarm to me. Have you asked about the world renowned peripheral nerve center at King (?) medical something. Sorry I can't remember the name but I remember reading about it and it seemed like the doctors there were on the cutting edge and the most knowledgable in the world on peripheral nerve problems. Keep us posted. I'll be sharing the results of my next EMG/NCV test soon too.Krackersones
 
Raindog, I am in agreement with Krackersones on the worry factor. The denervation-renervation thing - I was told by the foremost specialist in this region - happens continually in all people past the age of 7 years old and of itself is not indicative of much. It is just another piece in a puzzle that we bfs/bcfs 'ers seem to have pieces missing for. I can't prove it but am pretty sure that the bcfs caused my spinal problems (ruptured discs). It's one of those what came first, the chicken or the egg things. Why this doesn't make sense to the neuro I am not sure as I can't see how uneven muscle tension in your back can not cause misalignment of the spine and problems from it. Tight muscles pull consistently on one area for a month or so how could it not create problems (people are constantly being told that slack abdominals cause lumbar problems so why should this unequal support and stress on the spine be any different?) I had severe stabbing pains due to the fluid leaking around my spinal cord from the discs - so be careful and don't irritate them any more than necessary. Get one of those experts to give you some corrective therapy, exercises for strengthening of surrounding areas, so you won't get to that place. It's not a nice place to go so avoid it please!
 
What a magnificant bunch of people you lot are :D) Thanks for your support and kind words. I suppose i'll get to know more when i get the appointment from the neuro as there's a tendancy to wonder if in the long run its going to be a disabling condition. Imok I ve had this in my favourites so i might start giving most of the exercises them a go what do you reckon?Thanks once again
 
Raindog,I so agree that the long number of years you have had this with no real serious problems is the best evidence that this will be a minor issue for you. I hope you fully discuss your autoimmune theory with your docs since there is a lot of evidence which I won't repeat. If things do get to where you want to try to stop any progression they see you can try to impact the immune system and see if you get improvement like many patients have. I am thinking about asking for plasma exchange if I get any evidence of progression from my tests or clinical findings over time. If you do get improvement that is nice proof of the cause. To me, knowing the cause would be an equal benefit to the improvement.I would feel a great loss if you left the board. Until they know what causes bfs and can test for it who really knows what any of us have. We are all in the boat of having similar symptoms and diagnoses that are based on educated guesses not firm findings.Krackersones
 
Raindog,Before you think that because you have no backpain it means that your "motor neuropathy" may mean something else let me just give you a little info. First of all a great deal of "sciatica" which is not necessarily truly inflammation of your sciatic nerve (big nerve at the back pocket area of your buttock) but sometimes irritation from the individual nerve roots at the spinal level. That does not always come with back pain. I would think kiddo that if we checked your range of motion clinically you would likely be suprised at how poorly your low back moved. I see the report as actually good news my dear. This does not always mean surgery it can be as simple as some conservative therapy that could include epidural injections, manipulation, therapy, soft tissue work...what it show is that at least some of your issue are not motor neuron disease but rather some neuropathy which si in fact quite common and generally does not cause disability or at least the disability that you might be concerned about.Smooches,Kit
 
Raindog,You might be able to consider this good news. Because this is a possible explaination on how you got your BFS. And if there is a problem, maybe there is a fix. So if you have some messed up lumbar disks, maybe if you work on core strengthening, or consider surgery, maybe there is a chance you will get better.I had an operation at l5-s1 and my twitching seemed to start about 1 year afterwards. I figure my nerves were healing and were not very happy.So now about 5 years later I continue to heal. I don't know the clinical reason for this. Maybe Kit knows. The neurologists and neurosurgeon told me that I would heal for a year or so and that would be it. But it is not the case because my continue to slowly have additional feeling on the left outer edge of my foot. And I do not get leg cramps as much as I used to.Now I take Tegretol and maybe that is some of it.Anyway, back to your case. First off lots of people have messed up backs, so that in itself I am not sure is a big deal. But if you got herniations pinching on your nerves, well maybe that is the cause of your twitching. And maybe if that is removed, you will get better.Anyway at least you have something to follow up on. Please keep us posted. I am interested in what the various doctors say to you.-43RichyThe43rd
 
I get a lot of lower back pain. If I have been walking for a while, my lower back aches. If I bend over the bath for a while, straightening up is a painful process...I hate back pain :mad:
 
Everyone has posted good advice and suggestions. I just wanted to wish you well with follow-up and symptom management. I am confident that you are "fine" and by fine I mean you don't have anything terminal. Hopefully you will get an answer with some treatment options. Let us know how it goes!Becky
 
Much appreciated.... I heard that those gym balls are quite good too. I'll try youtube for some exercises with those as my wife as one :D)
 
Raindog,I hope you can get a referral there. I am a big believer in sheer experience being a big advantange and this place sounds like you would get world class analysis with doctors who are devoting their careers to people in the same category as you rather than doing a little bit of everything.Krackersones
 

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