Hello dear people, may be you can help me a bit, because I became very desperate...
My name is Irina, I am 38 yo and live in the Netherlands..
Thank you very much in advance that you’re taking time to read my e-mail and may be you can help me to find the answer.
Here is my story:
Somewhere around October/November 2017 I started to feel that my left hand became more “unhandy/clumsy" and I got a degree of weakness in my arm and leg and also some pain on the back side of my left leg. I tried to ignore it but found out that I feel it more and more.
I went to my GP and she referred me to a neurologist.
A blood sample was taken and nothing serious was found. No Lyme as well ( I was bitten by tick on September 22 2017 but never had any rash).
In the middle of December 2017 I already felt some abnormal sensations in my left leg and food-it was always very very cold, I had to wear a few socks at the same time! I also got some problems with my bladder-I needed to concentrate before I could start to urinate. At the same time I had some pain in my muscles- arm, neck and back.
I visited the neurologist on December 20 2017. He did not know what the cause of my symptoms was and planned an MRI for January in order to check for MS.
Later, in the end of December 2017 I got new symptoms: myoclonus. It has started from my finger, I have a video of it and continued over all my muscles, my limbs (slightly)
At the same time I got so much anxiety that I could not sleep and eat.
Whilst in Austria during Christmas 2017 an MRI can carried out which gave no indication of MS. These results were passed back to my neurologist who said that since it was not MS that he was finished and that `I should go back to my GP.
Mid January 2018 I got a burning feeling everywhere on my skin. Since that time my skin is less sensitive to touch than before. A few times in the night I woke up because of pain on some parts of my leg's skin and after it became almost numb. I can feel something but very very subtle. Also at that time some tested carried out in Ukraine. A CT of my stomach showed enlarged and clustered lymph nodes. A subsequent PET-scan with contrast fluid did not show that the contrast was actively taken up in the lymph nodes.
In the last 2 weeks my symptoms are getting worse (more frequent and severe) and in addition I have new symptoms, sometimes on a daily basis. For example:
• I have difficulty to focussing and concentrating when I look into the distance and have more like a tunnel vision.
• When I walk I sometimes feel pain in my legs and sometimes I feel a huge weakness. I have problems to go to WC . I need to take a time to urinate and sometimes it comes nothing.
• It seems to be my automomic disfunction got lost. My bladder , like I said before and I don't sweat anymore. Also my libido became 0.
I Have got parathtesias all over my body..
When I started to google of my symptoms I was pointed to MSA. Depression, anxiety , myoclonus , abnormal sensations. I would like to ask you: What is your opinion, could it be a MCA?
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irinaa
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Sorry to hear your story. You need a second opinion and as your Neurologist doesn't want to know you should ask your GP to refer you. The truth is neurological conditions can be difficult to diagnose. It sounds like your Neurologist has just given up? Wherever is the main neurological hospital in the Netherlands might be a good place to go to?
Good luck and sorry I can't say what is wrong. When you find out...and you will, please let us know? You might be able to help someone else? Take care of yourself.
Hello Marie, thank you to your reply. My neurologist is the second one already. The first one was in December and found nothing. I felt myself better that time. It s not easy in the NL to find the good one and almost impossible to choose doctor yourself. Also waiting lists are incredibly long.
Irinaa if your condition is getting worse then surely you must be a priority? Can you search on the internet for best Neurological hospitals? Then when you find the answer to that search for best Neurologists? Hopefully you will find both not too far from you. Sorry you have to do this but it sounds like there is no other way?
Marie, tha problem is that I can't visit any of doctors without letter from my GP or another specialist. I can't do it on my own because of the rules and insurance
Irinaa you can see your GP without a letter? Then when you see him ask to be referred to the hospital which hopefully you will have found on the internet by then? Once you find the hospital search for their Neurologists to see which one you want to go to. Sometimes as they also do private work you might get an understanding online whether they are good or not?
My sister-in-law had MS and your symptoms sound a lot like hers but you say that the Neurologist in Austria said it's not that?
I wish you well to getting a answer can't add to what's already been said . please write back when you know more.
I can feel your stress and know how you feel good luck.
Budsey
It would be impossible to diagnoss you by ourselves in this group, nor should we for safety reasons. But your symptoms sound symlar to MSA, but not the same. It could be a toxicitie problem or anything.
But i do know a suffrer that has another neurological movement disorder of which you are discribing symptoms that maybe more like him than my wife, whom has the MSA. He has PSP (progressive supranuculear palsy). This effects the eyes vision and movement early on before movement problems set in.
Although you do not live in this country you can still consult one of the Nurse specialists at the Multiple System Atrophy Trust In London. by email. They have a deep and wide experience with oher neuronogical diseases as well as MSA
I am a little concerned about the use of consultants in so many different places. If possible it is better especially with rare diseases, to have a single centre of care where you are known.
Contact the MSATrust in London and what they advise
Thanks a lot for your andwers. It seems to me it will be a long journey to find whats going on. My neurologist thinjs that is all more psychological than neurological.. how long time it took to all of you to be diagnosed?
Hello Irina. I think the one thing we can all share with you is the difficulty, frustration, highs and lows of trying to get some sense into what is potentially a difficult diagnosis. As always, Freda has given some excellent advice. Consider getting in touch with the MSA nurses at the MSA Trust - there is an email address on MSAT web site.
I think the one thing I have heard so often from those with MSA and other neurological conditions is that we have to be persistent to get a diagnosis - or suggested diagnosis as there is no such thing as a definitive dx for MSA.
It's very tempting to seek the advice of a number of specialists to get that 'definitive' diagnosis but all too often it's not able to be given. I agree with Freda; I would be careful about going to too many consultants - pick the one you feel most comfortable with - maybe the one you think will give you the most time and be persistent. Prepare what you want to discuss before the appointment, take notes, question, and confront her/him with your fears.
Others within this community have commented in the past that it's always worth taking someone with you to your appointments - they will listen, note things that you may not remember later and they can also help you push for your issues to be taken seriously and symptoms addressed.
Hello Irinaa, I am dutch and I am diagnosed with MSA. Ik took me a lot of diiferent specialists and diagnoses, before they finally diagnosed me with MSA.
Nijmegen hospital has a very good neurological team and know how of MSA. You can also contact the Dutch Parkinson(ism) vereniging, or check out their website first. They can help you with a lot of your questions.
Hello Gerdy, thank you very much for your reply. May I speak with u on the phone if you don't mind of course? My phone number is 0629590329 , if you send me whattsup or sms I can call you. And as I said, don't feel yourself obligated to do it. Thank you again for your response.
Irinaa, I would agree with FredaE get some advice from MSA Specialist nurse; neurological conditions are really difficult to diagnose and sometimes it is a process of elimination before the condition you are suffering from can be diagnosed. However darting about all over the world will add to your anxiety, go back to GP and ask again to see Neurologist; perseverance wins. Hope you get some answers soon
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