Neuro consultation from hell

New diagnosis and before diagnosis
1

I’m so unwell at the moment and have got progressively worse since December. I have sensory issues, tingling, burning, prickling, numbness and weakness in my left hand and have been back and forth to see my GP who referred me to neurology.

I went private for my appointment today and it was such a waste of time. I am so incredibly upset. The neuro didn’t even take the time to look at my GP notes and then said it sounded viral. He did not test reflexes and did a less thorough check than my GP.

My bowels aren’t working at all at the moment and I can’t pass any wind or stools. When I do it’s a real struggle and needs to be digitally stimulated. I asked if bowel issues were related to MS and he said ‘only in the very late stages’. I know from reading this forum and other resources that this simply isn’t true.

I had a brain MRI earlier this month which was apparently clear. The one positive is that they will now check my spine but this may be in weeks or months, meanwhile I continue to decline with a baby on the way and a house to provide for.

I have a lot of telltale signs of MS or ALS at present and, despite telling him how much this was impacting my life, he could not have been less interested. I mentioned my fasciculations and he didn’t even entertain the possibility of ALS. He simply said he would order a brain and neck MRI for a few weeks time and we’d have a 15-minute consultation to discuss.

I have rang the private practice to complain as he spent less than 3 minutes with me and was so unprofessional. My life and health are in tatters at the moment and I just want some answers. I really don’t know where to go from here but wanted somewhere to vent.

Did anyone else suffer significant constipation in the early stages of their disease? The burning, prickling and tingling in my limbs is so uncomfortable I’m barely sleeping a wink and my cognitive function and strength are also declining massively.

I feel like I’m living one big nightmare at the moment and I hoped this neurology appointment would be a step in the right direction but it was awful.

2

https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/

Hi Dave. So sorry to hear about this. Hopefully following this link and reading will put your mind at ease re ALS

3

Hello Dave

That really does sound like a cr@p consultation.

The trouble is that you can read all the symptoms of neurological diseases in the world, you still can’t assume it’s A or B or even C you’re experiencing.

As far as bowel problems early on in MS, everyone is different. Bowel problems such as you describe can certainly be a symptom of MS (I have had very severe bowel problems in the past). As to them only occurring in later stage MS, that sounds like rubbish to me too. I didn’t have them right at the start of my MS, but certainly within 10 years (I’m now 24 years in), so I wouldn’t think that is a ‘very late stage’.

The only thing is that you have had a clear brain MRI. That doesn’t mean that spinal lesions leading to an MS diagnosis is impossible, just that it’s less likely.

I don’t know enough about ALS/MND to comment on that. Certainly the link posted by jonny316 seems to indicate that it’s not so likely. But as I said I don’t know enough, you need to know that the page you’ve landed on is authoritative. I’ve just had a look at https://www.mndassociation.org/about-mnd/what-is-mnd/basic-facts-about-mnd/ On this site, it has a section titled What is not affected by MND. Included in this is the statement: ‘Bladder and bowels are not usually affected by MND’. So your bowel problems are probably not caused by MND. (Just a view based on a cursory look.)

What does your GP think? Does s/he think it could be either MS or ALS? Have you ever looked at https://fndhope.org/fnd-guide/ or had Functional Neurological Disorder suggested? Not that I’m suggesting you have or do not have any specific diagnosis.

It certainly sounds like you need further investigation. The worry and fear that you are experiencing, together with impending fatherhood is incredibly stressful.

I just looked back at your initial post. If I’m right, on the NHS, you’ve only seen your GP and had an MRI, plus the thoughts of the neuroradiologist. Is your GP referring you to an NHS neurologist? That would be worthwhile, but clearly it wouldn’t be as quick as the private consultation you’ve just had. Certainly another view, maybe from an MS specialist, would be helpful. Perhaps the private practice can comment on the appointment you’ve just had. It definitely doesn’t seem right that the neuro didn’t do a complete physical examination nor look at the notes from your GP.

When you’ve heard from the practice manager (I assume) with regard to today’s appointment, maybe you’ll see a way forward to getting your symptoms resolved.

Let us know what happens.

Sue

4

Dave

ask your GP to prescribe Movicol sachets that you mix with water,

You will probably need more then one sachet (I’m not sure on the recommended dosage) but at one point I was taking 3 sachets 4 times daily. If that doesn’t help, try Loctulose.

Linseeds on your cereal are good.

It is horrible when you are bloated and full of sh**,

5

Neuro consultation from hell is bad enough when it is free on the NHS, but when you’ve paid for it, even more galling.

I suspect he saw that you had a CFS diagnosis in the past and decided it was more of the same. I know you say that this is different from your normal CFS symptoms, and you are right to want it checked out, rather than assume it is just a further development of the CFS.

CFS is very debilitating - often much more so than MS can be for many, and is a serious illness in its own right. The description of your more recent symptoms suggest to me that they are a bit too systemic / generalised for MS, at least MS in the earlier stages. CFS shares a lot of symptoms with untreated Lyme disease, which also presents more systemically. It may perhaps be a progression of your CFS?

All I can say is keep pushing for answers. I think those with troubling and debilitating neurological symptoms, where they are not getting a diagnosis, wish for certainty, and MS is one of the less difficult neurological conditions to diagnose, so hope that it might be that, to end the uncertainty and be able to plan (of sorts) ahead.

Fasciculations are quite common, and not just associated with ALS. Again, your pattern of symptoms doesn’t seem to fit neatly with ALS, so hopefully will be ruled out in due course. I get fasciculations, have done for years now.

Long Covid is now getting research attention. Maybe it may lead to a better understanding of CFS / ME, which has been neglected for too long, and some of the other undiagnosed neurological conditions they can’t put a name to, that are probably caused by unknown viruses / pathogens.

Do press for getting some relief from your constipation. Being all bunged up means that the toxins within the faeces are being held back in the body. If you have a leaky gut it will allow some of those toxins through. Leaky gut and leaky brain are closely connected, so maybe something is happening along these lines with you.

Which part of the country are you in? Just wondering where these unhelpful neurologists are located. I’m about to ditch my current one - in the north-east of England, and judging by patients’ reviews there’s more than one neuro that’s performing very poorly at that particular hospital. I also saw one 12 years ago in Sheffield who lied directly to my face - 2 bare-faced lies. He was a strong proponent of FND, which he believed to be the root of almost all neurological presentations, and his other mission was to prove ME was all in the mind.

6

hi Dave, oh love, I really do feel your anxiety through your post.

I am shocked at the treatment you got from seeing a consultant privately. I know NHS doctors can be offhand, as I have seen a few myself.

I went private at the beginning of my MS journey, back in the late 90s. That chap was very good and spent an hour examining and talking to me. You should have had at least, the basic neuro test.

I have looked into MND and ALS, as it is called in USA. Very frightening.

Your previous replies will already have given you good advice, so I wont go on.

I take laxido every day to make me have bowel movements. It is certainly NOT an end stage symptom…what claptrap!

I wish you all the best

Boudsx

7

I’m sorry to read of all of the troubles you’re having Dave. As someone diagnosed with Relapsing MS just a couple of years ago at just over 50, I can comment on 2 of your concerns. Bowel issues most definitely CAN be a part of MS. I had been feeling mild sensory disturbances for a few months and was on wait list for Neuro. In the beginning of the March, with no warning at all, I developed a strangulated bowel and was taken in for emergency surgery where I lost 12 inches of bowel which had died. Whilst in hospital, I developed excruciating nerve pain in my left hip and leg which I attributed to the surgery. I still have that pain now, and in fact it was an MS relapse, probably triggered by the trauma of the bowel op. At my post op check, the consultant asked whether I had any immune disorders as he thought my bowel issue was not physical in origin, but neurological - ie messages getting muddled, causing a sluggish bowel, causing a blockage that had very suddenly accelerated. Two months later I had a huge relapse and lost use of one leg and went into hospital where I was diagnosed with MS. One of my lesions was active in my thoracic spine, and I was told this had caused my bladder issue (unable to wee all of a sudden and possibly a sluggish bowel.) I had steroids and both bladder and bowel resolved within 24 hours.

My second point - I had no lesions apparent in my brain hence had MRI of cervical, and thoracic, spine. My active lesion causing the all symptoms below the waist was in my thoracic region. So DO chase up a thoracic MRI. And DO believe that bowel and bladder issues can present at beginning of journey!

Having said that, my neuro thinks I’ve had MS for 25+ years - so maybe I’m not in the early stages?? Who knows.

All the best with it, it’s a very difficult time when waiting to find out what is causing your symptoms.

Please do keep an eye on the bowel situation. My blockage was acute, all of a sudden with NO warning. My bowel surgeon said signs of a developing blockage could include being unable to pass wind or waste. Early blockages can be treated medically, rather than surgically I believe, so please ask your GP for a referral to the Gastroenterology team for an endoscopy if you’re still struggling.

Minnie

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Some doctors seem to have slept through the lecture about how important it is to build a strong therapeutic alliance between clinician and patient. I’m sorry your expensive specialist has a dud bedside manner. There’s some room for improvement in selection for medical school, isn’t there? Of course they need to be smart. But A*s in physics chemistry, biology and maths are not adequate on their own!

Never mind. I hope you are closer to getting the answers you need, even if you do need to make most of the running.

Alison

9

Minnie, your experience is similar to mine. 2019, out for a nice bicycle ride one Sunday afternoon with my cycling club. Monday morning, wake up doubled over in pain with stomach cramps. GP says IBS, so perscribed some buscopan. Buscopan did nothing, so phone out of hours GP monday evening, who gets me checked at out of hours GP at hospital.

GP suspected I had appendicitis, so transferred to acute admissions. Next day, CT scan shows twisted bowel, so operated on that afternoon. Fortunately, I didn’t have to get any bowel removed, but I was left with a long scar down my middle… Since then no bowel issues, but it does make me wonder if that had been a first episode of an MS attack? I’ve not been diagnosed yet. So far brain & cervical & lumbar spine MRI’s have came back clear. I am waiting on results of my thoracic MRI scan which I had in January.

10

Eeeew, Movicol. Lactulose is ok, if you can stomach the sweetness. I take two large gulps a day right out the bottle, the little cup they give with the bottle is rubbish. This makes a bottle last two weeks on the nail.

11

Movicol is only disgusting if it’s pretend orange flavoured. (In my opinion.) I had the lemon & lime (sugar free) version for years then discovered ‘Movicol Plain’ by accident - the chemist dispensed it for some (incredibly lucky) reason. It tastes of nothing at all. Mix the Movicol with water, and it just tastes like water. I had to get my GP to expressly prescribe it because it’s more expensive than the more common Laxido. I couldn’t bear Lactulose, nasty greasy sweetness. Yuck.

Sue

12

Stomach cramps where you are doubled up in pain, and it’s IBS? Wow. Appendicitis should have been first suspicion, I’m thinking, necessitating that scan which saved your life. Torsion is not funny. Is why I suffer lactulose every day twice a day.

These MRI’s that everyone is having. What Tesla strength are they? 3T will not find a lot of lesions, 7 up will find more. I’ve only had 3T’s and am still in limbo.

13

Hi this could all be down to anxiety a silent one. You say you have a BABY on the way and a home to provide for. A life changing moment is coming up believe me. are you worrying about it?

I always worry truth be told when people use the correct words for things that are happening to them. when my journey started back in 2020 when i went blind i had no thoughts of MS, stroke yes MS no. My doctor dismissed the episode as heat induced.

ok constipation is quite normal in many people who don’t have MS. It can be down to poor diet or even lack of fibre.

being stressed too can cause constipation.

My first symptoms which really bugged me were urinary tract infections, eye problems, and heat intolerance. I also when having a shower couldn’t feel the water hitting parts of my body. My left leg from knee down felt like it was encased in concrete, and my foot often felt like i was walking through frosty ground with a hole in my welly lol.

It took 16 years to be diagnosed with way more specific things then you have right now.

I would think you need to stop worrying about MS or ALS and just concentrate on your new arrival. IF it is MS or ALS, believe me it isnt going to go away and one day will show itself properly so that it can be seen by a neurologist. Mine was with 2 positive VEP tests and several spinal tests.

I am being totally straight and honest here as i cant see any point in not being. MS is difficult to diagnose so is ALS. constipation can be part of MS but equally can be caused through stress and poor diet.

tingling limbs is also a sign of anxiety. Is it anxiety i have no idea. I get tingly legs and fizzing and burning, but they were not my first symptoms. they have gotten worse over time.

16 long years of battling this disease.

I am still here lol.

try to relax enjoy the upcoming event, put the rest out of the way if you can for now. it can wait. the more anxious you show you are the less likely you get taken seriously.

It is worrying times, with covid too, and a lot of us are suffering all kinds of anxiety issues.

can i send you a supportive hug, from an old lady of 70 things will get better. If it is MS it will show itself but for now it isn’t.

CC.

P.S. I have been with neuro since 2006 i have seen him privately and on NHS. first appointment was private and after explaining my symptoms and issues he did a full neuro work out i was in there for an hour.

I also had 2 private consultations by 2 different neuro to try and pin point if it was MS or not.

  1. said it was M.E. he never even looked at my notes.

  2. said it was functional disorder again had not seen my notes and when he did sent me an apology letter as he realised he couldn’t diagnose me with FND as i had too many positive tests.

14

Wow, that you paid for private consultations with two different neurologists and neither could even be bothered to read your notes.

15

Yes I know they had plenty of time to get them too. the fact they tried to tell me what was wrong with no idea about my history. well that was a waste of a couple hundred quid. One was supposed to be a top MS neuro.

When my neuro i see saw his letter he laughed. said is that all he could come up with. Sorry you had to waste your money. Be assured I will find out what it is and he did.