I posted a while agp that i was going to see a neurologist due to weakness and limbs giving way. He tested for mysthenia gravis for the second time, which came back negative for the second time. I never thought i had this conditin myself. My anger is at the consulents letter to my GP which i had to ask for.
Hw wrote i didnt want to speculate tonight about the diagnosis, a;though i suspect we may be looking at a psychological approach here. He also put that i was pleasant but anxious.
Im annoyed because all none of my symptoms are in my head they are real and affect me daily.
He said he didn not want to specutlate yet he did.
How can medics get away with all this nonsence and thats what it is. I did not have time to tell him what all my symptoms were or how they affected me.
I wont be going back to him but i need to find out whats going on.
Thanks
Christine
Written by
yorkshiregirl44
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I know exactly how you feel, been there. The Neurologist was the most arrogant, flippant, self obsessed Dr I have ever met (found out later he has a terrible reputation, known as nasty within the area).
Since been proven wrong from my medical info largely down to my gp's support, so I can laugh at him now.
I'm sure they see people of all sorts but just feel the way they treat people sometimes is disgraceful. Thankfully there are some nice Consultants out there too.
I'm so sorry you are having such a hard time Yorkshiregirl and have to deal with such an arrogant, useless consultant as well!
Have you ruled out B12 deficiency? The symptoms can be few and quite subtle, as well as varying from person to person. Looking through your posts, extreme fatigue, weak trembling limbs, etc. are important signals that could be the start of B12 def. neurological symptoms, which need to be treated without delay. It is often interlinked with other autoimmune conditions and most GPs generally have very little knowledge of the condition so you have to arm yourself with research and the latest NICE and BCSH guidelines.
Low B12 was rules out a while ago. i susspect alot of my problems are coming from my back. Just had Xray that showed some abnormalaties but yet Dr has put no action. These arrogant consultants make a bad situation even worse. and its really not fair.
Even if you don't have low B12 it is still worth experimenting with a methyl version of B12 and also methylfolate.
I've always had high in range or over the range B12. My folate levels have bounced around a lot but were always in range. Nevertheless, I stagger when I'm walking, and it embarrasses and annoys me a lot. So I've recently started supplementing with methylcobalamin and Thorne Research Basic B Complex (which contains methylfolate), and I started noticing improvements very quickly.
I'm now wondering if I have an MTHFR mutation which is preventing my body from using ordinary B12 and folate, so it ended up in my bloodstream, showing high levels, not getting used where it needed to be. Its all speculation and I'll need more testing but I'm not in a hurry right now.
Bear it in mind - it is a worthwhile experiment to try, and is harmless as far as I know.
I have the MTHFR mutation and despite taking the recommended suppliments very little has changed. I stagger when walking and must look like im drunk.
I wonder why this disease is not treated in the way it should by medics, it really does affect every organ in the body and NO a simple daily tablet does not create wellness, in some of us anyway.
When I went to see the neurologist he too was very arrogant. When I said I had pain and weakness and couldn't do things like I could before my thyroid problems. He said how did I know that I couldn't do the Zumba classes. Arrrrh!
I too am a Yorkshire girl who saw an arrogant sh** of a neurologist who cast me as anxious. It's funny how constant pain, weakness and fear of what is happening to your body will do that. I was eventually classed as ME, but seem less ill and less 'anxious' now I'm on thyroid meds.
I would be interested to know if we saw the same neuro. The one I suffered was in York.
I went to an neurologist in Airedale. Iv also got an M.E. diagnosis , my anxiety usually goes sky high when i have left a consultation because im amazed at the rudeness and hurried way that im treated.
The problem when we find ourselves face to face with this type of consultant (very little c!) is that their team always sticks together (unless very very very very very obviously wrong... like physically staring them in the face, not needing teßts). This in turn leaves us nowhere to go from there on.
My Neuro said 'don't go to A&E and don't bother with further tests, when they'd not bothered doing tests they inpatient me to do (bank hols weekend)... unbelievable. Further tests revealed problems and I will go to A&E if was required.... what a 🙊 he was/is.
Unfortunately many of us are forced to do our own research and checks, whilst tryin to deal with ill-health too.
You are right we do have to take things into our own hands, to keep ging back to them is only bad for our health, strange that as it should be the other way about.
I really feel for you, yorkshiregirl. I have been seeing a neurologist myself and, thankfully, saw a consultant who really listened, didn't treat me as if I was an idiot and I was gobsmacked that she didn't suggest I was stressed (or any of the other excuses we have heard to explain away symptoms).
It is so unbelievably unfair to get stuck with a doctor who won't acknowledge that you are not there just for fun. He said you were "anxious"?? That description would annoy me too, horrible label. Feeling ill, waiting months for appointments, real worry about what is wrong with you ... it would make most of us feel "anxious".
I hope your GP can be more helpful.
Because it is a legal fallback position. It is difficult to sue for negligence if they can claim that in their professional opinion, the symptoms are psychological.
My coeliac disease was dismissed for years by the nhs as being all in my head.
My pernicious anaemia was too
My hashimoto's was too
My double vision was too (which is why went to moorfields a and e and am now on a waiting list for a specialist since nhs gp refused)
Also remember that nhs gps are greedy and purely revenue-driven. Again, they can legally claim that in their professional opinion, symptoms are psychological; that way they get away with not giving specialist referrals and keeping their profits up.
Also, if they can push you down the mental health route, they get extra funding- because different illnesses/diseases are worth a monetary value. So basically there is a financial incentive for labelling you as having mental health issues, but no incentive for - for example, diagnosing coeliac and then having to fund you seeing a gastro.
It is a rotten little system that is totally open to abuse
I had to fight hard to get an MRI done. Have you had one yet?
The reason I ask is because XRays do not always show up what they need to see to make a more accurate judgement. I'm aware that many GP's don't want to refer patients for MRI's because they're expensive and it comes out of their budgets.
I was diagnosed with Fibro by the Rheumatologist but instinctively knew that there was far more going on. As I mentioned earlier, my symptoms were similar to your's. Despite my continuous complaints and refusal to accept that there wasn't more going on than just Fibro, It still took more than three years to convince my GP that I needed an MRI and he only relented when my 'gait' changed - I started walking differently to compensate for my condition. At the end of last year, I was referred for a Lumbar Spine MRI.
My recent diagnosis following the MRI is Grade 2 Spondylolisthesis with constitutional canal narrowing and spinal stenosis in two areas. Finally, my GP and Rheumatologist have realised that I wasn't making it up and it certainly wasn't IN MY HEAD! I'm even starting to wonder if I have a similar probelm in my neck.
So... Be Persistent. Don't give up. Stand by your convictions and continue to request further investigation with an MRI. Ignore the so-called specialists and consultants. They are mainly using a process of elimination based on whatever evidence they have to hand and in truth, it's actually more like educated guesswork.
I really hope you get the service you deserve. Ignore the Neurologist's comments. Develop a 'Sticks and Stones' approach to anything you hear and focus on the end game - which is to get an accurate diagnosis for what You know is going on with your body.
Let us know how you get on and allow us to continue to encourage you as I've been encouraged in the past.
Its very interesting to hear your story. I have had lumber and cerevical Mri in the past. Cervical showed some stenosis/narrowing at C5/C6. and spondylitis. This has got alot worse. Lumber Mri showed some degeneration and disc bulges wich caused sciatica. From what iv read thorctic spine dengeation is less common, it did show some bridging and bony spurs at T9-T10. Whateever the cause i beleive it is this thats causing my arm and leg problems. The strength in my upper body goes compleley when doing crtain things and it feels like my muscles have to work harder from due to weak spine. I too was given Fibo diagnosis.
At the moment i feel emotionally drained at the very thought of going my to see my doctor.
I get confused with all the differnt spondy type conditions. Is yours due to immflamtion?
Honestly, I know almost exactly how you feel. I also get confused with all the stuff going on but because my diagnosis is so recent, it's indelibly etched on my brain as I now have to start preparing for an 'Open Back Op'. Even the name sounds horrific. Fortunately, they don't call it that, they prefer to call it a 'Decompression and Fusion Op'.
My issues are between L1 and L5 - Lumbar with some Sacroiliac joint issues. I have Grade 2 Spondylolisthesis with Constitutional canal narrowing and Spinal Stenosis L3/L4, L4/L5.
I'm in permanent agony. Basically, I discovered that my condition is congenital!
Give yourself time to rest, recoup, regroup, re-strategise and gather your energy. Don't be rushed by anyone, just do things at your own pace, when you're ready.
This forum is so helpful. Do let us know how you get on and if there's anything we can do to help.
Sorry, I should have made it clear that my type of Spondy is the one where one of the vertebrae slips out of place and impinges on a nerve or nerves - you know, like when you're pulling out a jenga piece when all the others are neatly stacked.
Yep, same here... spinal problems. The damage was there when I collapsed and was hospitalised and pooh poohed away by Neuro.
Yes, other physical (not mental) problems found along the way after.
It was a Consultant in another field who examined me and had the decency to thoroughly go through my file. It was he who said 'why has nothing been done about your spine, as likely cause of your main problems?'. Why? because the Neuro's were totally ignorant towards the MRI's showing problems.
Incidentally, a woman arrived in my Neuron ward with spinal problems who told me she been immobile with spinal problems for eight years, as NHS wouldn't treat her. This time, finally they did treat her.
It's not always what the problem is but the attitude around it.
I beleive every single word you say and nothing suprises me anymore. Can i ask you what was your spinal diagnosis, there are so many that sound alike and have similar symptoms, all very cnonfusing.
You have my utmost sympathy, Christine: been there, done that, got the T shirt. I formally complained about my first neurologist and demanded a new one. I got a new one and he was just as bad - just in a whole new way. The only unifying theme was arrogance and a complete inability - and lack of desire - to listen. I'm afraid this is the norm for consultants. They earn £100,000 a year, plus (yes, honestly), and I think they earn it for showing the most determination not to step away from the text books they read when they graduated.
It's a graph really; the ones who are oldest have the most entrenched, out-of-date arrogant attitudes and actually, quite literally, know nothing, and don't want to know it. It's an oddity of the NHS system that the higher up you go the less the 'professionals' know, and the less they want to learn. I've learned the hard way that unless it's absolutely essential, stick to GPs. They have their (many) faults but generally you can find one who is half-prepared to listen and who has read the odd current article in the Lancet.
Avoid consultants (especially neurologists!) at all costs. They really are not worth the effort.
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No better on T3 so far
So cross with GP! But so confused with blood results and how I feel.
Angry at doctors
Thinning hair
