unhappy :(

New diagnosis and before diagnosis
1

hi all

I have just turned 43 years old and am hoping that you lovely people may be able to help/give advice… apologies in advance if this post sounds quite moany (appears that is my general mood at the moment)

brief history… in December i developed numbness/pins and needles in my chin/lip area this coincided with toothache and a abscess) After several weeks of having this numb sensation i mentioned it to my dentist who asked if i had any other incidents on numbness it was then that i remembered the following

October .after several weeks of having a achey arm woke up with what i would describe as a dead arm, coupled with stiffness and limited movement went to gp and it eventually (after a week or so wore off) still have dull ache but other than that all good

December… numbness/pins and needles in chin/lip started (still have to this day)

February… went to get up and was unable to place foot to the floor …coupled with dead feeling but also discomfort, this only lasted 20 mins or so and then was completely back to normal

On reflection and having looked at ms symptoms i am pretty certain i have also experienced ms hug several times (approx 18 months/2 years ago… sounds silly but i was carrying extra weight back then and i just thought it was cramp in my ribs where i had a lot of fat in that area) Ive been shattered for years but again thought it was a combination of late nights/early mornings and having twin boys lol

My dentist said i should see my Gp but said he would also refer me to maxillofacial (just incase numbness was due to abbcess)

gp said straight away he was concerned it was ms and i was very fortunate to see a neurologist within 2 weeks of my gp referral. However without wishing to sound ungrateful or moaning i have been very unhappy with what has/hasnt happened since. The neurologist almost came across as disinterested and i constantly had to ask questions, all my questions were answered with grunts, the outcome of the appt and examination was she thought it could be ms (this was only because i had to push her and ask what she thought it may be, she said she would arrange a mri and it should be done within 4-6 weeks.

On seeing maxillo facial and explaining my symptoms consultant said i can tell you now i would say its ms as i have it and your symptoms are almost identical to mine (Expect he shouldn’t have said it but he did) he said he would have arranged mri but seeing as neurology were doing it he would leave it with them.

Since then i have rang the hospital as still awaiting the mri date and have been told that they had recd the mri request but she had failed to date all the mri requests so they have been sent back to neurology… rang today again to be told they have now got the request and i can call again on monday if i still have not heard anything (this will be 4 weeks since my appt with her) finally got the clinical letter today which states the following

“the neurological examination showed slightly increased deep tendon reflexes with cloniform ankle reflexes on both sides and hypoaesthesia over her second and third trigeminal branches on her left more than right side. Her tandem was slightly unsteady”

letter states she has ordered a brain mri… i thought if ms was suspected it would be a brain and spinal cord mri??..i have spoken to her today in relation to this and she was clearly unhappy that i was querying this, she said basically that if it is ms it is will show in a brain scan they would then to a mri of spinal cord but basically in her words it would be a waste of money to do a mri of spinal cord too until there is proof from brain mri. Apparently this is normal /standard practise and i must stop worrying and be more patient!!

In the last week i have had severe achyness/stiffness in both arms and legs i know ive become more aware of how im feeling and i am trying really hard not to get stressed out but feel really frustrated with the whole thing.

Ive read a lot on these forums that it can be a long drawn out process but am i being unreasonable in expecting to have at least a mri date by now? and in your experience do most people with suspected ms also have a spinal mri too? Im not really sure where i go from here other than trying to be more patient but every day right now feels like a week and i just feel so disgruntled by the consultant. I think i will feel happier once i at least get a date for mri but am wondering how long after mri do you get answers, judging by experience so far could be a very long wait, Could i possibly ask to see a different neurologist (for results) or will this just get their backs up??

Sorry for long post just needed to get it all out , thanks for taking time to read :slight_smile:

Best wishes xx

2

Dear glittergirl.

I can only give you my own personal experience. The first is that there is no way on earth (unless you go private) that you will rush the neurologist. Mine too is very dismissive, I think that is just the nature of the job.

I had my MRI last May and that was of the head and the neck.

I then had loads and loads of more blood tests. It has taken until today to get to the next stage. I am lying on the sofa in extreme discomfort having just come back from having my Lumbar Puncture, almost a year after my journey started. I have been told that it could be six weeks before the results are available.

I’m afraid that on this journey it does appear that you have to be a patient patient.

Good luck.

Zippy

3

Hi Zippy

Many thanks for replying.

Firstly sorry to hear that you are laid up after your lumbar puncture, i really hope you soon feel better and that it results in you getting the answers you need. I cant believe you are now a year down the line and you have had to wait such a long time for potentially what could be a life changing condition!

Can i ask when you had your brain mri did it show any lesions? the consultant i spoke to said that if i did have ms it would most certainly show on a brain mri and if none were shown then i probably don’t have it (im not sure how accurate this is) i know she is clearly the expert but surely the lesions appear depending where the problem is ? (hope that makes sense?)

xxx

4

My MRI showed ‘a few’ white matter lesions which were periventricular and juxtacortical. According to the McDonald Criteria for diagnosing MS, these would meet the requirement for MS…… however my neurologist was not at all bothered and said ‘I don’t think we are looking at anything too sinister’.

It was only after the haematologist found a problem with my red blood cells that he decided to do the LP – I have no idea what the connection is.

I am afraid that it is not a simple process at all, and they will not be rushed. My understanding is that you would need to have an MRI that shows lesions, but even if you do, they could be caused by a number of conditions.

I know it is frustrating; I have had a year so far. I have a friend who has MS and it took ten years to get a diagnosis :frowning:

Google McDonald Criteria

5

Hi, I completely understand that you’re feeling frustrated by all the waiting…but sadly that’s almost always the way with MS when you’re seeking definite answers.

As for the MRI, when mine was done, twice, I only had brain, so I don’t think brain & spine is always needed. You may be asked to have a LP as well, it’s not always needed.

Neuro’s are often ‘tight lipped’ before they are convinced enough to give a diagnosis, that usually means you’ll be asked to have more tests…again more waiting.

You really do have to be patient, but you could ring your neuro’ secretary to find out how things are progressing.

You also could ask to be referred to a different neuro if you’re unhappy with the one you’ve seen.

Good luck

Rosina x

6

Hi Glittergirl. I was also suprised at how slow everything moved, after multiple visits to GP and A & E i was told each time they would mark neuro visit and scan as urgent, i must have received three variations of what urgent means. I bit the bullet and went private, got my scan and dx within two weeks. If you can wait then patience pays off as each visit isnt cheap. The MRI alone would have been 800 but the hospital were doing a discount if you paid on the day (the corporate side of healthcare). I’m now on the consultant who i saw privately NHS list and he has taken responsibilty for my care. Take care and the best of luck to you.

7

Hi GG,

It’s a shame there seems to have been some administrative bungling with your MRI, and a pity (with hindsight, of course) that the maxillo-facial guy didn’t press ahead and order the MRI, because he believed Neurology would be doing it.

Other than that, though, I can’t see any major wrongdoing, or any deviation from how it usually goes during an MS investigation (or anything that looks a bit like MS).

No, it is not usual to have a spinal cord scan initially - these are very expensive. It is vanishingly rare to have spinal cord lesions but NO brain lesions, so the brain is a much more fruitful place to start the search. Additionally, spinal cord lesions are typically much more subtle and harder to distinguish on MRI, so if you want nice, clear, unambiguous evidence, again it’s better to start with the brain.

I was unusual in having a spinal scan first, but that was only because I had symptoms of a slipped disc, and MS wasn’t even in the running at that point. So they scanned my spine, fully expecting that’s where the problem would lie.

There was a problem, but so subtle it was almost missed, and it certainly wasn’t a slipped disc. The (possible) anomaly on the spinal MRI led to me being referred for a brain MRI, and that was much more conclusive, as I had six clearly-defined lesions!

So if they’d started with my brain, they’d actually have been much closer to the answer quicker, than if it had been simply assumed I had a slipped disc.

Tina

8

Many thanks for your replies and words of wisdom, today i am feeling more relaxed about the whole situation i think i have allowed myself to have got swallowed up with it all.

Zippy … I really can not begin to imagine the frustration of discovering lesions but still not having a confirmed diagnosis… i really hope you get the answers you need soon… i also hope you are feeling brighter today following your lp?

Rosina… thanks for your reply and wise words … i am going to take a back seat and be more patient… i think if i were to carry on as i have id end up making myself ill…it is out of my hands so will just have to go with it.

Mcp88 Really pleased you got answers so quickly it must be a relief to have a answer so fast. I used to have private medical care when i worked (prior to having my boys) and it always amazed me that the consultant you see in the private hospital would be doing the same job for nhs the next day… they say money cant buy you health but it certainly buys you answers much more quickly and if i had the money i would do exactly what you have done… Were you expecting it to be ms?

Anitra Many thanks for your reply it really helped me take perspective of the situation and has put my mind at rest, i was fearful that by only doing brain mri they were only looking at half of the jigsaw but you have helped clarify this. It must have been a hell of shock to discover it was ms and not slipped disc.

best wishes to you all xx

9

I know how you feel. I had private medical care with my old Job and this was my first year not having it. I suspected MS but it came as a shock none the less. I’m very fortunate as my family were able to help. My wife and I could not afford it ourselves. I’m only 26 so hoped for a few more years of good health before things started to go wrong. I hope you get the answers soon! Keep posting as this forum and website are really helpful!

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Mcp 88 … thanks for replying… I’m so pleased your family were able to help its a worrying time without the added stress of waiting for months and months for answers. It must still be a shock to hear it’s ms and almost harder at such a young age. I suspect I have ms but having read a lot of posts on here I’m half expecting mri to be clear. I will definitely continue to view and post on this wonderful site. Wishing you and your family the very best and a positive time ahead :slight_smile: x

11

So pleased I’ve got my date through for mri (this coming Wednesday) feeling quite calm and really hoping it may provide some answers to whatever’s going on. Do the results go to the gp or neurologist? Or If scan is clear will I still see the neurologist still? Or does it vary from region to region?

Thanks in advance

X

12

I’m really pleased to hear you have got the scan date. With me the results went straight to the neurologist, he reviewed the result and updated my medical record, i got the MS nurse to print me off a copy of his letter. I’m in Scotland so no idea if it varies from region to region, maybe someone else can answer that. Have you made a follow up appointment with your neuro once the result is in, mines offered me a consultation either through telephone or face to face. Best of luck to you, i hope you get your answers.

13

Hi Glittergirl,

This was my own personal experience. MRI results are first interpreted by the radiologist. My scan showed that I had lesions in the periventricular and juxtacortical (both places which are typical for MS). The report said ‘demelyniation (MS) shall be considered’. It took about two months to see the neurologist again who decided that we were not looking at anything ‘too sinister’.

Even if lesions are shown on your scan, this will only be one small part of the picture so be prepared for a long wait.

With regards to your GP, they will not be qualified to interpret the scans.

Hope it all goes well.

Zippy

14

To Glitter Girl. Re moany…no you are not moaning, just very frustrated and that is understandable. I urge you to push push push for a resolution to all this. I speak from experience as my diagnosis took 18 years. Yes, I’ve been fortunate in that my MS has progressed so slowly but now I am becoming more and more incapacitated by it and I can’t help but feel if I had had some treatment years ago (steroids?) just maybe things would be better today. I had so many symptoms, double vision. Pins and needless, foot drop, facial problems, weakness and fatigue but MRI scans never showed up lesions because they repeatedly scanned the wrong bits. E g. My lower back, my brain, when all the time the lesions were in my neck (several). At first I was told I had transverse myelitus but eventually new lesions were found and Ms diagnosed. It was only last year after a broken leg due to a fall and repeated problems my GP sent me to a new neurologist in a different city hospital. Finally I got the diagnosis I always thought was likely. I’m still fighting though as we have no MS nurse where I live in Yorkshire and there is little support. The good news is that I no longer believe I’m going mad! I fight this by trying to remain active, I was a Walker. I use a foot lift strap on my worst leg and walking poles, or my ever loyal husbands support for walking. I find the big issue is that friends just don’t understand, they have no concept of the fatigue and can be dismissive of the mobility issues. I don’t wany sympathy but I do wany people to understand when I say I’m too tired or such and such a thing is too difficult. Sadly they offer platitudes which don’t help. Good luck and fight for better treatment. I’m positive your GP has to offer you an alternative referral if you request it. We all need to know the truth, better to have a diagnosis and know what you are dealing with than remain confused. All the very best. Miles.

15

Hi Miles

I can see you’re a new member, so you won’t perhaps have noticed that this thread was started in 2015 and the original poster hasn’t actually posted anything on this site since 2016. (You can check a users most recent activity by clicking on their user name.)

It does sound like you’ve had a hell of a journey with MS. But now you’ve been diagnosed maybe you’ll get some more effective help with your ongoing problems.

The one thing I noticed from your post is that you have foot drop. Have you heard of FES (Functional Electrical Stimulation)? If you see a physiotherapist, you could ask about it. It works much better to pick up your foot than a MS Mate (or whatever the equivalent is that you’re using).

If you want to start a new thread, with questions, comments, thoughts, you just tap the New Thread button, give it a title and then write what you please.

You are very welcome to the club which we’d all rather not belong to, but are happy it’s here nonetheless. As well as the Newly Diagnosed forum, there’s the Everyday Living forum which also tends to have a very wide variety of threads, from treatments and therapies to comments and the ever lengthening Brain Fog thread.

Sue

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