It all started 3 years ago when I had pneumonia and a stroke, shortly after I noticed that my jaw would not stop tremoring,I had right side weakness and my face had started to droop on one side, it also started to pull on the other side.My swallowing started to play up and I lost my voice for weeks at a time. I went to see a neurologist and he thought that I had MG he sent me to Oxford to see the neurologist but he said no not MG, I was taken off the pyrodistimine tablets which worked.
By this time my hands had started to tremor and I was have head nodding when I woke up and after eating food. I went back to my neurologist and he said that he didn't know what was wrong and sent me back to my GP as he could do a better job in treating me then he could(GP very good).
2 years on and my tremor is now through out my body,I have facial drooping when I get tired, my muscles tire very quickly and I'm unable to walk any distances,I can not swallow food and I have to drink fortisips 5 times a day (video scan of neck shows extreme muscle contraction on trying to swallow medium to thick liquids). I have stopped breathing twice due to the neck muscles contracting and have been admitted into hospital with breathing and swallowing problems. The only drug that releases my muscles is lorazepan 0.5mg given over 24 hours.
I recently was sent to sheffield to see a neurologist he talked to me and did a brief examination and said that I have FND caused by pneumonia. He wants to send me to a psychotherapist which to be honest I'm not very keen on seeing as I know when my problems started. The neurologist could not explain some of my symptoms like restless legs and why I tremor in my sleep is so violent that me and my wife now sleep in separate beds.
My GP has been saying for years that he thinks that I have 2 problems and one is MS, but with no positive mri nor blood test no neurologist will except this.
Over the last three years my quality of life has got worse I am unable to cook due to the tremors and cannot be left on my own as my breathing can change at any time, I find that my symptoms change from hour to hour, I am unable to go out on my own as I cannot walk very far and when I use my wheel chair my arms tire quickly.
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I am shocked that you have been left in this way without further help.It does seem to be the case these days that a clear scan/bloods is dismissed,often as psychological ,with no further investigations.As I advise everyone who lands in the FND category, if you do not feel that your symptoms arise from a psychological problem,do your own research.You may be able to suggest some ideas/tests from your knowledge.By all means go to the psychology sessions,they may be able to rule out a mental health basis and could also give you ideas on how to cope with your symptoms/disability better.At least you can say you have done as required and attended them.
You have a history of positive response to a medication for MG,you need to question why you have been taken off this, when it was clearly helping.
I agree that many of your symptoms do fit MG, yet the swallowing and breathing problems are down to weakness in MG ,rather than muscle contraction as you describe.This would appear more in line with Spasticity or Dystonia ?You may well have more than one problem going on which would give rise to these mixed symptoms.I have symptoms of spasticity.This makes my muscle tone tighter than it should be.Muscles feel tight,stiff, juddery and painful at times and power and longevity of use is reduced as they are not as loose and flexible as they should be. So a long walk for me feels like I have run a marathon with the faster onset of muscle fatigue !
Lorazepam is primarily used for anxiety treatment but also has muscle relaxing properties.I was put on Diazepam for muscle spasms/motor fits during my illness ( suspected Encephalitis ).It worked well but was only allowed to use it short term as these types of drugs are addictive.
I really don't know what else to suggest other than research,find correlations and go back to GP with suggestions. I wish you the best of luck. Talk on here anytime, it can help to share your frustration !
Good Morning, So very sorry to hear your about your health, and also the lack of real interest from the neurologist. I don't understand why they took you off a medication that was helping. I have responded very positively to anti-leptic drugs. I had tremors bad like you and they put me on pronanolol and they resolved almost completely. Reserpine for restless legs and they will stop. Everything you are saying sounds like what I have. I have dystonia and with other fnd symptoms. My neuro and primary work close together and I feel blessed. As you said you know when your symptoms started, why and how. I know exactly when mine did as well, my brain was damaged.Some Neuro's, most Neuro's not all neuros, have the same opinion if you do not fit into their neat little diagnosis box, A + B = C. We here at fnd do not fit. Not until that diagnosis box opens and puts us all into it. Such a struggle, but firmly believe it will happen. Ativan is a great muscle relaxant if used for contractions and such. Whenever I have surgery for anything it is the first course of action, as I always come out dystonic and a mess. I do not suffer from anxiety, but a firm believer in the drugs I have mentioned. Also, I personally do not have much faith in the psychologic profession at all, I could tell story upon story, but i definitely know this is not the case with everyone, some have been helped with their guidance, I would not go to a psychologist unless you know him and trust him and Have heard wonderful things about him, I have been to both good and bad in the beginning, both said they could not help me that I needed a good neurologist, they were absolutely right. This fnd makes you weary of Dr.s, makes you not want to trust them, and makes us feeling like we are the cause. It is a hard disorder, but you can live with it, and you can even thrive with it, we are all here on this earth for a very short season it is what we do with this season that matters in our real life to come. God Bless you all today, Cathy
thank you for your response The neurologist explanation on stopping the mg medication was I didn't have any positive test results as they do not include a positive tensilon test, and due to it been an expensive medication he could not justify me having the drug.
After been in out of hospital and seeing different Dr's and neurologist I've come to the conclusion that the old method of signs symptoms and history inst used any more and if you don't have positive test result you don't have it, even though you can go 10 years plus before you get a positive test result.
it isn't a duty of care any more its a duty of cost and a lot of the old consultants and neurologist aren't prepared to learn about new disorders they seem to be stuck the there ways.
My GP has been fantastic he was the one to prescribe my medication for tremors and restless legs.
I went on Diazepam but didn't get much relief from my symptoms that's why I was put on baclafen I have 10mg twice daily and it helps.
I too take Baclefen, have been on it for 15 plus years, I am unable to walk at all without it, and the pain is over the top. I take 15 mg 3x per day. It is truly a God send. I do not like all the meds, however, the alternative is back in a chair with drool coming from my mouth unable to communicate or care for myself. I praise the Lord for all of His provision and the many advances in science. There is still much hope in our medical profession, may they have eyes to see and ears to hear. God Bless, Cathy
Did I read that correctly-your muscle performance improved during the tensilon test but they are ignoring this result ?
I agree with your thoughts on diagnosis these days-positive tests or it's a no.Never mind the red flag,textbook symptoms or history.I too feel that cost is an important factor in dismissal.It is a huge disservice to patients who suffer greatly.Delays in diagnosis and appropriate treatment can cause worse damage and prognosis in some cases.Pleased that the Baclofen is helping. x
When the Dr gave me the tensilon test I could feel my face returning to its proper shape and my body felt like it was waking up. This lasted for about 2 hours and that's when he prescribed me with pyridostigmine, He said that there was a couple of my symptoms which he could not fit into the MG group but he was satisfied that I had MG.
When I get admitted into hospital I get asked by numerous Dr's have I been tested for MG, when I tell about the tensilon test they agree that that shows I have MG but only a neurologist can diagnose me with this condition.
How can so many agree and so few disagree, I think that Dr's are not willing to give a diagnosis in case its wrong and they worry about malpractice. I would rather be told that yes you have Mg but there is also an underlying disorder that may change the diagnosis than be told nothing. They are all to quick in sending you to psychotherapists. I've already had a stress evaluation and she said I was fine.
Neurologist don't listen to what you are telling them I was told by my last neurologist that 90% of disorders are physiological and not physical. He said that stress is the main cause.
I know of one person that was going to the neurologist for over ten years showing all signs of MS but no positive test results they sent her for stress and they kept saying that it was all in her head, until her last MRI scan and it showed MS.
I have an appointment with my GP next week to have a talk about the next step forward he doesn't rate neurologist as they keep sending me back to him for treatment.
Thanks for clarifying.I agree doctors seem to be scared stiff of an incorrect diagnosis but to pass all difficult cases off as FND,and refer to psychology with no further investigations is negligent in my opinion.
What is wrong with having 'suspected' or 'probable' MG based on positive tensilon test in your notes ? At least it gives other medical staff an insight into your history.
Shocked,saddened and angry for you.
Best of luck with your GP appointment,they sound to be dealing more sensibly with your case. Angela x
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