Private Neurologist appointment
Phil82
Member Posts: 50 Connected
I thought I would just share this with you as I find it staggering but you probably know already.
I found out at work we have a private healtchare plan where you claim money back for physio, dentist etc also they will pay £500 for a consulation with a consultant and free MRI/CT scans.
I just rung up BMI hospital which is 5 mins walk from where I live and I can see a neurologist a week on Friday!!! ! The daft thing is both of the neurologists are the ones that work in the NHS (one of them is my mums neurologist for MS) and that I would eventually get to see anyway.
Hopefully we might have some progress now over the next couple of weeks as I see the neurologist on the 13th and my lad is at the peadatrician on the 18th.
I have also been offically refered to NHS neurology now but I only know that because I went into the drs and they printed off the letter, 7 weeks from my EMG and noone has actually contacted me.
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I have the letter now anyway so it's not a problem and it just says the EMG was clear, the private neurologist wanted a referal letter but that would take 4 weeks for my GP to write and £40, hopefully he will be happy with the NHS referall letter and Rheumatology report.
Hopefully depending on how much he charges my health cover will cover 2 appointments so I'm thinking I might get a consultation, scans and then a follow up then go back to the NHS with a diagnosis, well that's the plan in theory.
One thing the Rheumatoligist does mention is that I show signs of Dystonia in my writting now is that just another word for writters cramp or is she saying that I have Dystonia, I possibly do as I have been told my muscles are always active and that's why they are so tight but I have no iregular postures and no twitches/spasms, I think that's why I am a bit of a mystery.
Private consultations can be very expensive indeed. I really hope you can get a diagnosis and some clarity very soon.
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So yesterday was quite positive but I still remain a mystery!
The neurologist thinks I might have some rare thing called Myotonia Congenita https://rarediseases.org/rare-diseases/myotonia-congenita/
He thought my muscles were to large to be Dystonia/Spastic and ruled out movement disorders straight away, but couldn't answer why my left foot pointed out. I have massive calfs and quads, and he said someone with Dystonia wouldn't have muscle Hypertrophy like me. I'm not sure but this guy specalises in movement disorders and Parkinsons so I guess he has a good idea what Dystonia looks like.
That web page does sum me up pretty well especially around how it gets better once you get moving and "warm up", although my problem is my hyperactive muscles always seem to be switched on not just after certain movements, also I seem to suffer more aorund the main nerves which this doesn't mention.
I also can't find anything out about secondary symptons most people just seem to suffer with a bit of stiffness but I have an odd walking gait, starting with arthritis, weak ankles etc which is why I was leaning more to mild Dystonia.
The big issue that is stoping him diagnosing me is that my EMG was clear and all these conditions would show on an EMG (another reason I think it's Dystonia). He's going to check my results and we might re run the test followed by muscle biopsy, genetic testing and maybe even a trip to a muscle specalist in Manchester.
One good thing about been rare is that people are keen to follow it through and find out what's wrong with you.
He will write to me in a week or two to explain what he thinks we should do next, they mystery continues!
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Ah well my hopes have been dashed again, the neurologist has emailed me to say after reviewing the EMG he doesn't think it's Myotonia grrr
Basically I have to have the EMG test again although I am sure it won't show anything, as Richard says CP won't show on an EMG.
Intrestingly I was reading a link on here about Dyspraxia/movement disorders and that was amazing me and my son tick just about every box which convinces me it must be a movement disorder.
I'm convinced it's generalised Dystonia which has started in the left leg/ankle, in kids it offten starts in this area before spreading.
The mystery continues!
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The neurologist ruled it out because he thinks my leg muscles are too large and was fixed on it been a muscle hypertrophy issue but then couldn't explain about my left foot pointing out more than the right.
£365 for a re run of the EMG which won't show anything but I want to get the results back quick so will have to go along wih it otherwise it will be about 9 weeks for the results if the last one is anything to go by, if you go private they write the results up the next day for you even though it will be done in a NHS hospital.
Failing everything I will tell him that my works healthcare plan will pay for a MRI scan so can he send me for one because even he thinks it's not needed it would rule a lot of things out.
I really hope you get some answers soon.
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Surprise surprise EMG 2 was all clear and the guy tried everything to get some activity showing but nothing. He said there is no way it could be myotonia although my legs are classic myotonia legs.
Back to trying to convince the neurologist it's a central nervous disorder and that he needs to send me for a scan. Surley he must agree now because I can't see what other options there are.
Can I ask a question what is the difference between Dystonia & Spastic Cerebral Palsy or is it the same thing?
Sorry to hear you are still in the process of reaching a diagnosis. I hope that you get there soon.
In answer to your question in its simplest sense Spasticity CP tends to relate to stiffness of muscles, whilst dystonia is related to twisting or repetitive movements. Both of which can be painful. You can have spastic cerebral palsy with dystonia (as I have)
Probably the best definition is this by the Dystonia Society
https://www.dystonia.org.uk/dystonic-cerebral-palsy
There are other types of dystonia though too
https://www.dystonia.org.uk/pages/category/types-of-dystonia?Take=18
Hope this helps
Best
Thanks that's useful I don't have any twisting or sudden jerky movements so maybe it's just CP but Dystonia would explain the hereditory side more for my son.
So I seem to have hit a dead end again saw the nerologist Saturday and because my 2nd EMG tests are all clear he says there is nothing he can do for me! He says I don't have a muscle disease and that's the end of it and maybe there just is no answer. He had completley changed his tune since the first time I saw him.
He said if I didn't believe him about not having a muscle disease I can go an see a specailist in Manchester Dr Mark Roberts head neurologist at Salford who specalises in muscle disease. The problem is I do believe him that there is no muscle disease (I have always beene 99% sure this is a central nervous problem) so I don't know if to go and see this guy or try and get the GP to refer me to someone else who specalises in movement disorders instead.
The neurologist wouldn't entertain the idea of a CND because I have no abnomolaties or spasticity, I would argue I have spastic muscles because of how tight they are and he wouldn't send me for an MRI because he said it would be "a fishing trip because we don't know what we are looking for".
My only hope now is that my sons pediatrician will continue to look into him and she might be willing to explore a few other things. She wants to discuss his delayed motor skills with me in more detail so that might lead to something. She was thinking of testing him for Charcot Marie Tooth (neuropathy) which would be weak ankles but I think in some strange way we have the reverse where our ankles roll outwards because they are to tight/stiff but in the long run we ened up with the same affects as the muscles get tighter, I am sure my ankles are getting weaker.
I am still interested to explore Dystonia a bit more especially General Dystonia & Dopa Responsive the latter seems to sum me up pretty well and how General Dystonia can start in early infancy in the foot and ankle and then spread, whatever it is my main issue is that I have stiff ankles and now my feet and ankles seem to be getting worse. Also my son he has the same problem with his ankles but at the moment everything else seems ok, maybe its started in his foot and it will eventually spread in his teenage years.
Does anyone know or have a list of consultants prefrebably in the North of England that would be worth trying to get refered to? who specalis in movement disorders.
Maybe there never will be an answer and it is just the way I am but for me the neurlogist was very quick to dismiss other symptons like talking with a slight lisp, weak core muscles, weak upper body he was just to focused on the legs hypertrophy and wasn't willing to look at anything else.
Any advice gratefully received because I feel like I am hitting head against a brick wall now.
Thanks will take a look.
I have just had a very good conversation with someone at the Winsford Neuromuscular center and as soon as I mentioned a neurologist in Salford they said that will be Mike Roberts and if you get the chance you have to go and see him, yes he may specalise in muscle disease but he covers everything and we get a lot of our refferals from him and all our patients coment on how good he is.
Here`s how it al went...long story...but I believe you and I should compare notes now and in the future!
I`m 67 now...a full time wheelchair user, need hoisting for every transfer, have no bowel or bladder control and have spastic muscles in my legs.
At 45 I began tripping up, falling,,,had some spectacular ones too! I saw GP who told me there was a 10 month wait to see a neuro! Gadzooks! So I paid £175 and saw one within a week! Then I transferred to NHS and saw the same neuro!
Primary Progressive MS was suspected. I had 4 MRIs, 2 EMGs , a VEP and oodles of blood tests, over some years and nothing ever showed anything of interest.
PPMS was 95% diagnosed. In 2011 MS was discounted and HSP was diagnosed...hereditary spastic paraparesis. This was decided by physical examination. Some years on, a genetic test came back negative, so HSP was discounted.
I`d had my life turned upside down and inside out enough! Like you no doubt!
So now I have been referred to The Walton in Liverpool to a movement disorder clinic. I expect no miracles, but it would be nice to get a firm diagnosis. I have a new symptom.....left hand feels as if I have a glove on and movement can be erratic.
My very best wishes to you and your son. xx
Yes that's the man and I can get an appointment in 2 -3 weeks so it's worth a try.
@pollyanna1052a referal to the Walton was going to be next try before this guy at Salford was mentioned, I hope they can help you.
My mum has PPMS although I don't hink that's my issue as she doesn't have muscle tightness issues despite having dropfoot.
At least they sey send you for MRI's. I was told 12 months ago by an osteopath I need a CT scan of my head and neck but noone will send me for one, so frustrating.
So I rang the lovely people at the Dystonia Society as I wanted to check out my symptons before I walked into the neurologists and declared I think I have Dystonia and he thought I had gone mad like the first neurologist did.
I'm pretty sure now what what I have is a mild case of Generalised Dystonia/Dopa Responsive Dystonia it's just getting someone to listen and investigate it.
Do any of you have Generalised Dystonia? I would be intrested to know how it affects you.
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The Dystonia person was very helpful and said it could be that my muscles are in constant spasm and some of my syptons did sound like Dystonia. Also if I don't get any further with the msucle specalist then to ask for a referal to a movement disorder specalist at the Walton Centre.
The issue now is that the neurolgist thinks because my legs muscles are so large that has top be a disease and not a central nervous system but there must be other people out there walking around with large muscles especially if there issue is with their legs/stiff ankles.
The symtons which seems to tick all the boxes are:-
Started in Infancy probably in one foot or leg (my left ankle) and has then spread, it got worse when I was tennager, my left foot turns out however when you walk you can't tell, the burning I used to get in my back, neck and shoulders sounds like the pain people with neck dystonia get, My foot roll outwards when I walk which is the common sign of Dopa Responsive, my neck sticks forward slightly and I have rounded shoulders, I have a subtle lisp, my eyes always feel heavy and sometimes twitch and my hands are always tight and I have Dystonia/writer cramp in them according to Rheumatology.
Yes I see him in two weeks, but was just wanting to check if my suspicions were on the right track before I suggested something to him that was completley wrong.
I'm also hoping to get my physio who specalises in neurophysio to write me a report of all my weird muscle issues so at least there is something there to back up my claims. I think the last neuroligist was to quick to overlook a lot of things so to have something in writting from another health professional might help especially because there is very little on my NHS records.
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Update
So today we saw Dr Roberts who has decided I should be sent to the School of Neurology in London!!!
Somehow without even having any notes and not examining me and just going from what I told him he said although Myotonia doesn't show on the EMG there are some very rare diseaes that are similar which might not show and the only people that could do the genetic test for these diseases are the people in London.
Like the last neurologist he said I can't have dystonia because I don't have any twisted limbs, I'm not convinced I am fairly sure that I have Dopa Responsive Dystonia which is a mild type, with stiff walking gait and you can have no obvious abnormalities.
I explained I don't think I inherited this and I have aquired something along the way but he said well maybe the gene was just never dominant.
So probably 6 months until I go to London and I am convinced they will say they can't find anything.
He is putting me on gabapentine to help with my foot pain is anyone else on this and does it hep? will it also act as a relxant I think I need a relaxant more than a painkiller.
Yes they know about my son and thats why they think its a hereditory muscle disease. However where I disagree is that I dont think I inherited it Im sure I aquired something from a virus and it has niw becone hereditory.
I would feel happier if I was confident they had looked at all the symptoms and could tell me why this was a movement disorder not just looking at the leg muscles like they have.
On the medication i could really do with something to stop spasms/cramping as well as get rid of the pain will gabapentine do both?
Just thinking if it doesnt work or i need something else but am not seeing a consultant now for at least 6months what do you do.
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For those of you still following my saga here is an update which is so staggering it's hard to believe.
Since the last neurologist appt I still haven't seen my GP so no sign of the gabapentin I believe there is a letter from the consultant but there is no mention of medication. Over the past few weeks I have been feeling worse both physicaly and mentaly like my legs are swelling up every night, when I wake up in the morning my legs are so stiff I can't move them and then I start feeling anxious, stressed etc
So I have been pretty sure for sometime now that I might have this rare thing called dopa responsive dystonia what makes it rare is that it often gets misdiagnosed as CP or junior parkinsons and people never get the correct diagnosis. I've been doing a lot of research into it and I found out that DRD is caused by a lack of dopamine which is a neurotransmitter which is incharge of your motor actions/movement and it also affects your general mood. I looked up the symptoms and I had a classic case of low dopamine levels.
I thought well lets see if you can eat high dopamine foods which you can and is there any vitamins and indeed there is a magic thing called Dopa Mucana readily available on amazon and other websites and sold as a dietry suppliment. Lots of people buy it just to use as a suppliment to improve their general mood like a happy pill.
It turns out Dopa Mucana contains an element of L-Dopa the drug used in parkinsons medication and the way they test you for DRD is by giving you a course of L-Dopa and if all your symptoms magically go away you have DRD and can be fully curred.
Well within 20 mins of my first tablet its like someone flicked a switch and all the stiffness and tension in my legs just dissapeared it was amazing. The next morning I woke up no stiffness or aching I jumped straight out of bed no issues. The past week my energy levels have been up, my mood better, my apetite under control more as I'm normally always hungry.
The best bit is my range of movement/flexibility is getting better by the day. I went to see my neurophysio and she couldn't believe the change in me she said my walking was the best it has ever been, my hips looser and my hamstrings have got longer where as they have always been locked solid.
I have even started running again!
I've not taken any for 2 days now because you have to be careful that your body doesn't become immune to it so we will have to see how long the effects last.
I see the GP on Monday I have no idea what she will make off it, prob tell me off for taking it because I have since found it is stronger than what people think and it is more than just a dietry suppliment but in the absence of anyone coming up with any better suggestions I can't see that I have anyother option . I must have done enough now to prove that I warrant a second opinion by a movement disorder specalist prefrebly in Dystonia at the Walton Centre.
There's a lot more science to it as well but I won't bore you with those details!
Sadly my feet still hurt when I walk the dog but hey you can't have everything.
Just a disclaimer to others, please only take medication that has been prescribed by a doctors or GP. Similarly, follow the instructions for vitamins closely, it is also recommended that you ask your GP before taking supplements as it could interfere with other medication.
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Yes good point Chloe I have done further research into Dopa Mucana and it's seems the ones you buy off Amazon are a very high dose so you have to be careful (I have ordered a lower dose). I went to the GP today who admitted everything I was telling her was way above her head showed her the tablets but she didn't say anything about them.
She said I seem to know far more than she does and to just carry on what I'm doing and if I want a referal letter to a movement disorder consultant if I find the consultant she will write we the letter.
I don't know if she thought I was mad or a genius but congraturlated me on my findings! and there was me thinking they would just tell me off for looking things up myself.
Hi Guys
I thought I would give you a quick update as with a bit of luck I might be on the mend.
My offical medication of Simenet (which is a parkinsons medication which is a bit worrying in itself) arrived today and it's basically exactly the same as what I have been taking anyway. It's taken a month to get it (I wont bore you with the details of how useless my GP surgery is) but finally we might make some progress.
I have been taking a lower dose of the suppliment I bought on line and have just been taking one ever 2/3 days it seems to have kept me ticking over Christmas and kept the stifness at bay but hasn't had the radical effects that the original stuff had. All was going well I was even back to walking the dog 2-3 miles until last week I decided I would go cold Turkey and see how long I could go without any tablets before the symptoms came back and also I probably needed to get it out of my system before taking the new med. All went well for 4 days then all of a sudden my feet flaired up for a couple of days and now the fatigue and general groggy feeling has returned the past couple of days. The medication hasn't had much of an effect so far today but I think it's going to take a few days to build my dopamine levels back up after going cold Turkey.
However nothing is straight forward, I am on a 30 days trial but noone has told me what happens on day 31! Do I just go cold Turkey again and start getting withdrawal sypmtoms/side effects. I'm hoping my Dr can order me a repeat presecrption but I can't see a Dr for 6 weeks!!! by which time it will be to late. I rang the neurolgist who perscribed them but he said he doens't want to see me again and after the trial to go back to my original neuro. It turns out he's retired and I am on a 26 week waiting list!!!
Seriously you couldn't make it up.
I'm desperatley trying to find a new private neuro I can go to in 4 weeks when my tablets run out, luckily I have my amazon tablets to fall back on incase there are more delays. Imagine been left for 6 months to see someone after you had a finsihed a trial that had worked, it must happen to people and my heart really goes out to them.
So there we go I have decided I am just odd it's like I have a mix of CP & Parkinson (maybe I am greedy and not just happy with one of them) where as I thought I had more CP symptoms with the fixed muscles I'm now starting to think there are more parkinons symptoms the muscle rigidty, stomach cramps, fatigue all caused by low dopamine levels. Also the Neuro's still aren't convinced I'm correct becaus they can't expalin my large leg muscles but I think there are other reasons for that.
I was quite happy when I thought I just had mild CP knowing CP doesn't get worse apart from wear and tear, now I'm not sure what to expect as I get older will my dopamine levels fall further and I end up with full on Parkinsons. The neurologist says I deffinetley don't have Parkinsons but he also told me I don't have any central nervous system issues, CP or Dystonia so I don't really believe a word he says.
I'm seriously thinking about writting a blog to raise awreness of all the conditions I have looked into to provide advice/comfort for others who just seem to have every door shut on them, if I do I will be sure to give you guys a mention.
If I get fixed the next problem is getting my son sorted, he's starting to struggle with his feet and I think he might have ADHD well more ADD, and the more I think about it I prob do as well.
Oh well at least life is never dull anymore!!!
One thing I have learnt though is never give up looking for answers and keep bangining on those doors even when people keep shutting them on you.
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