Not having a good time.

[Rachel29]

Sorry this is going to be long but soo frustrated and one from neuro appointment and then letter from consultant.

 

I just need a good vent. Well I had my neurology appointment tonight and it was absolutely a waste of time I got there and sat down n he had no idea why I was even there my gp had put the referral through as asked by the neurologist I saw privately who had given them his notes on my first appointment . They sent no details through so it was like going from scratch(luckily I took the letter going through the examination with me even though he literally glanced at the 3 page letter which was suspected demyelination) . I told him 5 weeks ago I had a brain and full spine MRI and straight away he snapped that he doesn't have any access to my medical records until I told him I had the scans done at the hospital I was attending for this appointment. A couple of clicks later my scans were up on the scream and he said My MRI results aren't back and can apparently take up to 5 months!! I have never seen anyone click through pictures so fast and said well they look normal to me but there is no full report back on them so as far as he was concerned I don't have ms then said I'm no good at looking at spine mri's so will have to wait for the reports. Even if any matter was seen he flicked through that quick it would of been impossible to notice them. He then In a manor did a quick physical and said to have some bloods done n he wants to do some tests on my nerves so just wait and see. When it comes to my symptoms he doesn't seem that interested and said it's most probably going to be something I'm not going to get an answer to. I feel non the wiser at all. I felt on the brink of depression as it was with all these things that seem wrong with me I now feel worse because of tonight's appointment .

 

Yest.

Just an update as I've now received the letter from the neurologist I saw and put it this way I'm more pissed off then I was before. Starts off, reason for referral paraesthesia. Diagnosis non specific paraesthesia- no evidence of demyelination. General back pain. Action required none. I've been referred from a private neurologist I've seen for suspected demyelination that's why scans were ordered! Then goes on to say as I've previously seen the other neurologist it would of been more appropriate to see him. He then mentions all the NEW symptoms I have told him about but then says I've either improved or become more tolerant to them( bearing in mind I have had this problem 24 hrs a day since 12th may I assume I've kinda got use to it)

 

This is the good part, she saw dr Murphy who felt that the investigation for demyelination was required and organised mr's of the brain and spine. These scans have not yet been reported( 1st sept I had these scans but let's just remember for a minute what he's just said they haven't been reported) specifically there is no evidence of demyelination. Says my exams were normal which took him 30 seconds ish to do ha. I reviewed the mr scans which to my eye appeared Normal specifically there is no evidence of demyelination.

 

There is no evidence of a concerning neurological problem here. The clinical features would not be suggestive of demyelination and the normal mr scans would effectively conclude that possibility. Often we cannot identify nonspecific paraesthesia in the absence of a neurological deficit. It would be reasonable to organise some nerve conduction and I have checked some bloods that's were taken( I still haven't had any answers from that as he was checking vit levels) I have explained there is no suggestion of a concerning neurological problem and we may have no explanation for these symptoms. We do not find any medication is helpful for these symptoms. If there is no correctable cause then no specific action is required here. I will write with the test results but no further action is required on my part. Discharged from clinic.

 

Can anyone else see why I'm annoyed. How can he say all this when the scan results are not even back yet?? As it has suddenly started my original neurologist said it could be my "first episode" and did a proper examination. This guy didn't. Fuming. Got my nerve tests on the 28th Nov!! X

[Marina]

Rachel, sounds like that neuro is one of many like that... I saw several like him before I fell upon the neuro I now have who finally gave me a DX, and it's just so demoralising and upsetting when they're rude, pompous and dismissive!

 

If I remember rightly, your GP is nice and is open to your problems? Have you been able yet to have a chat with your GP about it? Might it be possible to ask to another neuro or even go back to the first one if you can afford a 2nd appointment with him? If at all possible, it would be best to try to see a neuro who specialises in MS. If you go here: https://www.mstrust.org.uk/understanding-ms/who-can-help/map-ms-services and type in your postcode or town name, then tick "Specialist MS Centres" at the bottom on the right, it will show you a map of all NHS hospitals with neuros who specialise in MS. Click on the little blue marker to see the hospital name and who the doctor is.

 

Having spinal problems, like with your discs and foraminal stenosis, can make it a bit harder at times to see the wood for the trees, but a good neuro should be able to do that.

 

As I said at the start here, I went through several neuros, including 2 MS specialists (I'm afraid!), and whilst not all were rude (some were, very much so), they all were pompous and/or dismissive. Not one would look at my notes, and not all would listen to all my symptoms. At least two of them laughed at my symptoms, one suggested my emotions were to blame, one kept saying it might be MS and then 5 minutus later said it wasn't and then said it might be and again said it wasn't, and so on. My pain specialist for my back, who believed I might have MS, was tearing his hair out having tried to help with neuros, and both he and my then lovely GP said with a sigh and whilst shaking their heads that neuros are "a breed unto themselves"... It was only when I got to my 6th neuro and I saw him carefully watch how I walked to his consulting room, and he listened and read all of my notes, took me seriously and didn't poo-poo anything, that I realised I might have finally reached the end of the line for finding a neuro - a month later and he DX'd me. I will add that not everybody has quite the experience of numerous neuros like I had!

 

What I'm trying to say here is that, sometimes, one needs to persevere You have a multitude of symptoms, some of which have been put down to back problems and others which your GP and the 1st neuro have taken seriously and (if I remember rightly) suggested might be MS. You know there's something wrong with you, your GP and the first neuro know too. Try not to let a nincompoop like this 2nd neuro get to you. It may take some time, keep going back to your GP, make sure you (or your GP) gets a copy of your MRI and the radiographer's written results of it and take these to any other neuros you may see. It might be that you'll have to wait some months for another MRI to look for changes; this is what happened to me, my first MRI showed lesions but it wasn't conclusive enough, a 2nd MRI later is what got me my DX.

 

If you haven't alreadys, make two sets of separate notes. One with your entire medical history, with dates. The other with all your symptoms and dates of when they first started and note whether they come and go or are always there. Both sets of notes should be short and without long descriptions, more like a bullet point list; this makes it easier to read, especially when there isn't time to read too much. Make two copies, one to give to the doctor/neuro and one for yourself, so that you can remember them by seeing them and then marking off those which you've discussed as it can help to see which you or the doctor might've forgotten to mention. I'm lucky in that my neuro likes my notes so much, he now even asks me to give him my hand-scribbled notes to keep which I make for myself when I see him!

 

Try not to lose hope and keep posting here, feel free to vent whenever you want - that's what we're here for.

[Rachel29]

This just keeps getting better. I got out of work yest to missed call from the hospital so I phoned back. They have made me an appointment with the original consultant I saw on the 1st Dec. Apparently my doctors have put the referral through. I rang to speak to the secretary of the 2nd neurologist I saw to see if my bloods were back and she said yes but u will have to wait till the nerve tests are back for the results together. I don't see why because if I do have a calcium deficiency why do I have to wait over another to be told! She then praised the 2nd doc I saw saying if he saw the mr scan and says it's fine then it is! But I kept saying to her the report wasn't back and there could be something small on it etc but she was having non of it and said let's just see when the results are back and will see this doctor is right. Then as I still continued to express my concerns that he's basically giving me an all clear result with no test results back her reply was well when everything is back you can always go back to your doctors and asked to be referred to someone else. I give up on him and that secretary. I have no idea why the docs have put the referral through for the original guy but I'm glad. I will get a property examination etc as this guy is the one who has suspected this is a first episode. Not liking being in limbo with results etc as we are on week 7 now but glad I'm seeing a good doc soon.

[Nick]

Rachel I did see your earlier posts but felt that Marina's response covered most things in a way that I could never do as adequately as she has done. There are lots of folks here who are feeling for you right now. Limbo land is NOT a nice place and the way you feel right now is exactly the way many of us felt during this 'not knowing' time.

 

There are two aspects to it. Firstly when you are in this position you want to have answers. It is also a time when the uncertainty of it all adds stress to the situation.

 

The original neurologist is I think the one you have more faith it. This is the chap you say you will be seeing again. That is good, you do need to try and find someone that you have confidence in. I know little about neurology, but you could ay I have been a regular customer for the last 9 years, so do have a decent perspective on the process. Neurology is a complicated business and unlike many medical conditions, there are often no clear answers to be had quickly. Conditions like MS develop differently for each individual and are often difficult to diagnose. Techniques are however improving and this does help. A neurologist needs as much input as he can from his patient and it has often been advised on here that people should make lists of both symptoms and concerns prior to any appointment.

 

The second part is going back to the stress caused by all this uncertainty. This is the big one!!! The horrible 'catch 22' situation where what is happening is that when you are under stress, symptoms can become worse. A cycle that needs to be broken, yet one that seems almost impossible to achieve. Well it's not! it can be done, as many, including myself have found..............not always too successfully but enough to help. I can't stress enough just how important it is that you, 'pull back' a bit and give yourself enough space to look differently at the situation. Keep looking for those answers and keep pushing for the appointments/ referrals, but at the same time understand that you can't keep getting stressed up. its a balancing act, its hard, yet answers will come I feel sure.

Marina made this forum exactly in response for the need for an MS community to be able to respond to exactly your kind of position. A thing that is very familiar to all of us who are going through, or have been in the same boat.

 

Hoping that is a little help

 

Nick

Edited 20 Oct 2016, 9:30 am by Nick

[Rachel29]

Thank you nick and marina I think I just needed that vent haha. X

[Mal]

Hi Rachel

 

sorry to hear that your going through all this crap , it took years for me to get a dx ,

it even got to stage that i stopped going to the doctors , because i thought there was no point

 

Best wishes

Mal

[Jennaxoxox]

My neurologist appointment was in September and I was diagnosed with ms in November. I seen my MRI and it was perfectly clear even to me the spots of inflammation in my brain. They were bright white because of the MRI being so conclusive it was easy to diagnose me with ms.

 

I started off with the parasthesias aswell, they are horrible and have never totally gona away, I have them from the bottom of my feel all the way to just under my bra. I don't think you could ever get used to them. I flinch when my kids wrap their arms round me and struggle to put trousers on and cannot wear socks ever. I can't imagine being in your situation and having no answers. My answer was great but it explained why.

 

The MRI is often not as conclusive as it was for me especially in the early stages so even if it's not glaringly obvious from the MRI it shouldn't be ruled out there are other tests that they can do to help point them in the right direction to a diagnosis. The lumbar puncture being one.

 

I really hope you get to the bottom of all of this it's really horrid and whilst I don't feel remotely greatful for my diagnosis I am greatful it wasn't a painful frustrating journey to get there.