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Old 03-11-2009, 01:30 PM   #1
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recently a could be diagnosis of cfs by neurologist

I dont know about anyone else but at the minute I have never been so frustrated, with myself the life that i'm leading at the minute and how on earth I have come to be in the sheer state I am at the minute because of wot the neurologist on mon 09.03.09 seems to think that my symptoms are cfs, although i have to have a few more test yet including a lumbar puncture to rule anything else out, after already having had an mri of my brain, a ct scan of my brain/head several chest x-rays, abdominal x-rays and my god the amount of blood tests since last september its unbelievable. A brief history will probably be in order .
I'm not normally this grumpy by the way....honest.....a rubbish day thats all.
Well last sept I was quiet happily in the garden with my kds doing a bit of weeding and so on then all of a sudden i can over really wierd chest pains a wave of pins and needles could nt see properley left side numb right eye lid drooped...called my gp then went straight to accident and emergency department they thought it was a stroke....ecg fine nothing majorly to worry about, weeks later reffered to a cardiologist, every couple of weeks having strange turns similar to the first episode, tests testa and more tests.
Now iin december of last year 2008 the cardiologist seems to think it is something neurological.......STOP....... wot on earth was going on.
Waited till the end of Jan 2009 to see Mr neurologist he saw me for 20 mins with 3 student doctors who were delghted to answer all the questions that the doc asked about which part of the body they should examine with my symptoms, by the way by this time I was having similar symptoms although with a few added bonuses....GOOD FOR ME EY .....severe weekness in all limbs tightness in the chest, tremmors in my fngers altered vision, constant pins and needles cramp in my hands and extreme protruding cramp in my stomach to the extent i look as if i were just about to gve birth, ptosis which doesn't relieve now great having a wonky eye on one side, stabbing pains in my fingers, neck and legs...DOC....said it was stress and that he was to prescribe fluoxitine....
February i used to have 3 or 4 bad days in the space of a week and now march i am lucky if i have 1 good day. I have never felt so useless, exhausted and so p****d off with the medical proffesion in the UK.
If anyone can relate or see anything that the DOC may be missing having said that I am waiting on results for MG and the dreaded lumbar puncture, but seriousley though any help or advise would be greatly appreciated.....sorry for the ranting people

 
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Old 03-12-2009, 07:37 PM   #2
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Re: recently a could be diagnosis of cfs by neurologist

Chamy,
I am so sorry you feel so bad. I will say you came to the right place! We all know what your going through.
I am not sure if it's just the UK, trying to get a dx with an invisable disease is so hard and time consuming.
It took me at least 1 1/2 yrs to get a dx. I too have had so many tests. In nuerology only the nerve conduction test and mri of brain. Then sent on to the next wonderful specialist.
My nerve conduction test was neagative and the mri was clear for ms but he did notice some abnormalities like something about my brain looked much older than my age and he asked if I had Alzheimers in my family. Great, hu? As if I didn't have enough to worry about.
Next for me it was all about ruling out cancer, I did not have the lumbar puncture so I cannot help with that. I got to have a bone marrow biopsy though which was a lot of fun. Also negative.
They can only dx chronic fatigue when everything else is ruled out. Sometimes your EBV titers will be very high indicating a chronic or ongoing infection.
All I can tell you is that I have been and am sitting right here today with your same thoughts. It is a very lonely disease in that nobody can see it so they don't understand unless you live with them. Even then it is so hard.
I feel like somedays while I am "resting" on the couch that the whole world is going on with their life but I am just stuck there. Also I miss shopping. Not that I have the money to go shopping but I can barely get dressed so I miss the freedom of jumping in my car and going. Also have no energy to put on make up. So I only do when I volunteer at the kids school. And then only b/c I have terrible sun spots.
I guess I cannot help. I just wanted you to know you are not alone. I feel your pain. I hear you! I pray that your flares will let up some. There will be a day when it is a good day. Take advantage without overdoing it. Be happy then, b/c the flare could show up at any time. Just try to go with it. Try to give yourself a break and let yourself be sick. You know it's real there is no cure that I know of so when your sick just rest. Give yourself some sympathy instead of being angry. Believe me I spent the first 6 months to a year being soooo mad!!!
I hope something I have said helps. I know this totally sucks!!!!

God bless,
Deena

 
Old 03-14-2009, 05:28 AM   #3
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Re: recently a could be diagnosis of cfs by neurologist

thankyou for the time you spent reading my ranting :-) and also for understanding....it means alot at the minute believe me

 
Old 03-14-2009, 06:02 AM   #4
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Re: recently a could be diagnosis of cfs by neurologist

I am in the UK, and also getting nowhere with the health system here. I have no diagnosis as yet, and am waiting on a neurology appointment along with a lumbar puncture. Just how bad is the lumbar puncture?

The problem I am finding, apart from the astoundingly long waiting times to get tests done and see consultants, is that everyone is very compartmentalised, and nobody seems capable of taking an overview to pull all the different threads together. In the last year I have been seen by oncology, respiratory medicine, cardiology, endocrinology, and general medicine. I am waiting for neurology, and am going private to see a Lyme-literate doctor on the off-chance, even though the NHS blood test for Lyme was negative. Each specialist so far has said that they cannot find anything to account for my symptoms, and the general medicine doctor stated that the different symptoms do not hold together very well, and seems to be just focussing on some and ignoring the others. My symptoms all started at the same time, so I do not buy into the idea that they are not related, and I certainly do not buy into the suggestion that they are "psychological": nobody has made that suggestion yet, but I can see it coming if no organic explanation is forthcoming.

Minor rant of my own, but it is intended to be supportive in letting you know that you are not alone in being let down by the medical system.

 
Old 03-14-2009, 02:50 PM   #5
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Re: recently a could be diagnosis of cfs by neurologist

Lymnphre
One of my specialists told me I have multiple things going on at once and not to let anyone tell me anything different. So I consider at a team of specialists some working together some not getting it.
I too have an oncologist, don't see nuerologist naymore, infectious disease specialist, endocrinologist and a nuerosurgeon not to mention my general doc show astually after a year told me I am afraif fibromyalgia is not what you have with your fevers and lymph nodes it is something much more serious...CHronic Fatigue. Since then even though the mupltitude of tests continue to theis day over 6 have said CFS.
I will always keep having things ckd out though. Like I have Hashimotos thyroiditis and every 3 months I have to have an ultrsound of my thyroid for nodlues. The endo wants them biopsied but surgeons alwasy tell me they are not big enough to be concerned with. Same thing with my lymph nodes. One doc thinks they should be biopsied but the ENT says not big enough. Even though it clicks when I swallow.
Sorry to rant just letting you know you might never get just one doc it is largely multifaceted.

Hope you are having a rather good feeling day!!!

Deena

 
Old 03-15-2009, 08:14 AM   #6
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Re: recently a could be diagnosis of cfs by neurologist

Chamy, You sound like you have LYME. Even if the tests are negative that means nothing.I was 1 year of same strange things, then finally got a postive lyme test. I was told I had fibro or chronic fatique too. I didn't believe and keep pressing. May God help find an answer and get well soon, Best of luck!!!!

Last edited by jett2020; 03-15-2009 at 08:16 AM.

 
Old 03-16-2009, 02:50 AM   #7
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Re: recently a could be diagnosis of cfs by neurologist

Chamy,
I am going to see a Lyme specialist tomorrow, so will let you know how I get on (moderators, fear not, I will not give information to identify this person on the message board). To my knowledge, there are no Lyme specialists within the NHS, and the NHS does not seem to recognise chronic lyme as a possible diagnosis. Certainly every NHS doctor I have spoken to has been very cynical about it, irrespective of their specialism. The person I am seeing tomorrow does do some NHS work (I think), but all of the Lyme-related work is private.

Momofboyz
Thanks for your response. I doubt that I am going to get a diagnosis of chronic fatigue, at least not yet. I know there are multiple things going on with me, some of which are diagnosed and have been or are being treated. However, there is this set of symptoms (excess sweating, light-headedness, headaches, and now extreme physical and mental fatigue) which do not seem connected to any of my diagnosed problems, and which have progressed throughout treatment rather than improved. There must be some explanation for them, and I really need help with them as things are getting much worse and I am hardly able to function.

 
Old 03-17-2009, 09:08 AM   #8
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Re: recently a could be diagnosis of cfs by neurologist

jet2020,
could I ask you a bit more about your Lyme experience? I know the test can often yield false negatives, so diagnosis is based upon clinical interview. You mention a year of symptoms before you got a positive test. Did you have negative test results first, or was it a year before you were tested for Lyme, at which point the test came back positive?

I have just had my Lyme consultation, the conclusion to which was that my symptoms are consistent with Lyme. That's largely what I had worked out for myself, which was why I decided to go for the consultation, however it does not really get me any further. I have had one test done, which was negative. The Lyme doc has recommended sending some blood off to a lab in America for another test, although as far as I can see it is a repeat of the same one (Western Blot), but you get a break-down of the results rather than just being told positive or negative. I am not sure this will get me anywhere either, as the test is reputed to be unreliable, so a positive result seems just as likely to be a false positive in the same way as the last one may have been a false negative. He was also quite willing to start me on a course of anti-biotics without waiting for the test result, which again makes me question the validity of doing the test.

Did you go for anti-biotic treatment and get a good result?

 
Old 03-18-2009, 09:43 AM   #9
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Re: recently a could be diagnosis of cfs by neurologist

Lymphpre,It was 1 year of strange symtoms before I got a postive test. {I had one negative test at about 9 months of feeling bad.} Since then it has taken 8 months to feel some what better. I've been on and off antibiotics totaling 6 months of ceftin. I have had a reaction to every thing else they tried.My western blot was postive for only 23 and 41 igm. So that is considered early stage lyme. They have treated me in 2 month intervals of meds. Yet every time I stop I get very sick again. I went this morning to the dr. and he said no more meds for now because I'm getting hives and itching. I pray this dose'nt all come rushing back. I have been through soo much with this and have 2 little boys. Best of luck to you. I would try the antibiotics if you think it's lyme. It can't really hurt while waiting for the next test results. If you try and start to feel really bad you'll know it's working. With lyme you have to get worse before you get better.

 
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