Limboland

New diagnosis and before diagnosis
1

Hi everyone,

I am new to this forum and wanted to share my story. I’m feeling very lost and anxious at present as I have a range of really discomforting symptoms and I’m yet to get any answers.

I have had CFS for a number of years and I am used to the fatigue, pains and sensations that come with this, however, in December I began to feel unwell with a lot of different sensations. It began with nausea, pains in my leg muscles, an increase in anxiety, behavioural changes, migraines, the sensation of raindrops on my skin and has progressed to prickling, pin prick pains, burning sensations and tingling, pins and needles in my limbs.

I have contacted my GP and he ran a neuropathy panel that showed nothing other than elevated b12 from supplements. I asked for a referral for an MRI as I’m due to be a father this year and I’m very anxious to get to the bottom of what’s going on as it seems to be progressing and getting worse. I had the brain MRI last week and the results came back to say it was normal. I was sent a disc with my scans and had a look out of curiosity and noticed some white looking spots so asked for a second opinion. This came back from a neuroradiologist and she said that there were no indications of MS and the brain MRI was normal.

despite being pleased at the MRI Being okay, I still find it very hard to believe as there looks to be some abnormalities and my symptoms all line up with MS and are getting worse. I had numbness in my hand last week and have arranged another GP appointment for next week in the hope that I can get a referral to a neurologist.

the clear scan, I now realise, does not rule out MS as I should have got one of my spine as well. One interesting note is that I was taking a b6 supplement for a long time and upon researching, long term intake can cause some of the sensations I’m having, although they have continued to get worse since I stopped taking it.

my symptoms are all over the body and are transient, the prickling comes and goes quickly and will dot from sole of foot to palm of hands, fingers and it’s the same with the tingling and pains. Does this sound like a similar pattern for MS and can anyone relate? I’m very down at the moment as I’m just getting worse and have no answers. I feel it’s a matter of time till things escalate and I get a definitive answer.

any advice is greatly appreciated

2

Hi Dave

When you see your GP next week, explain how your symptoms are progressing and ask for a referral for a spinal MRI.

good luck

Carole x

3

Hi Dave first off, I`d like to say congrats on the forthcoming happy event and I hope everything goes well in that department!

You and your OH will be so excited…and yes, I see how this event will make your anxiety worse when youre wondering whats going on with your health. I would question whether or not to continue taking the b6 tablet.

Having a normal brain MRI that doesnt prove you dont have MS.

I had 4 brain and spine scans before a 4th MRI showed lesions on my cervical and thoracic spinal areas.

It took 22 years to get my diagnosis of Spinal PPMS…even though I exhibited typical PPMS symptoms straight away.

I saw a very expert neurologist in a specialist neuroscience hospital in Liverpool in 2019.

So hang in there lad and look forward to that new babby. Let us know what you get (a Yorkshire saying)

Nanny Bouds xx

4

Thank you both for taking the time to get back to me. It’s been a very distressing period. I have a neurology appointment booked in for Tuesday and don’t know how to approach this. Do MS symptoms tend to be fleeting and in both hands and feet? I have heard from others they’re usually unilateral? I mainly have tingling, burning and prickling sensations in my limbs and face. I’m also having a lot of bowel issues, alternating constipation/diorrhea and nausea. I have stopped taking the supplements but do doubt that was the cause of my issue - I think I’m clinging on to hope with that one. It’s reassuring that the brain MRI was initially okay but I now know that this can be normal in the early stages and I could well have spinal lesions. Would a normal brain and spinal MRI rule out MS?

5

Hi Dave,

First off I am not a neurologist - or a medic. However I have similar fleeting tingling, it appears say in my face for a little while, then my hands, then one leg, then I get an itching feeling.

I am being investigated for these and when I saw the neurologist he said that the pattern of tingling was not that indicative of MS - that MS tends to be more constant and move slowly. I do not know if anyone else on this forum can confirm whether this is the case?

Anyway my neurologist seemed pretty sure that the fleeting patterns were a good sign that it was not something very serious. I had a brain MRI which came back normal too. I am now being sent for another brain MRI and a C spine MRI. He said if these were clear he would not see me again. I again might not be completely right here, but I also thought that spinal lesions without brain lesions were more rare in MS?

B6 - too much of it can bring on tingling sensations so this is a possibility. I had low Vitamin D but this isnt’ supposed to cause tingling. Again I have no idea why my symptoms are as they are. They have come back again too which is depressing :frowning: as like you I do worry that they will escalate. However there are many other causes and not MS so I do think, if we go for all the tests, then I’m not sure what else we can do?

6

Hello Dave

I’m not a neurologist either, but what I suggest is that you trust what your neurologist is telling you.

From my own perspective, I imagine that many of your symptoms would have shown up as demyelinating brain lesions were they due to MS. For example, you’ve said ‘anxiety, behavioural changes, migraines,’ are some of the symptoms you’ve been concerned about. It seems to me that lesions causing these symptoms would be in the brain, not the spine.

Other symptoms you’ve mentioned: ‘prickling, pin prick pains, burning sensations and tingling, pins and needles in my limbs’ would, I imagine might only show up (were they caused by MS) in the spine.

The other thing is the longevity of symptoms. In general, an MS symptom won’t be fleeting, there one minute and gone the next. I don’t believe you can state definitively that MS symptoms are or are not bilateral or unilateral. MS is a tricky beast and in general does what it likes!

If I’m right, then your neurologist is clearly being absolutely upfront with you, as the neuroradiologist has looked at your scan and doesn’t see demyelinating lesions, then the chances are there wouldn’t be any in your spine either. Little spots on an MRI could come from a different cause, or in fact be fairly meaningless, for lesions to be caused by MS, they have to clearly be demyelinating. Myelin is the substance that protects the central nervous system (brain and spinal nerves). In MS, the immune system gets confused and attacks the myelin, believing it to be a foreign invader. If you imagine the nervous system as being like the wiring on your house, supposing you had rodents nibbling at the protective covering of the wires, you’d have interrupted signals and muffled or just generally ‘iffy’ electricity. Further, just like the wiring on a house, your nerves affect specific parts of your body, so MS lesions would have to correspond with the symptoms.

If a neurologist believes, from your symptoms, neurological exam and MRI that MS is possible, further tests would be done. These might include lumbar puncture, visual evoked potentials and/or nerve conduction studies.

As you have an appointment on Tuesday, why not write down all the symptoms you’ve experienced, note how long they’ve lasted and whether they’ve reappeared in exactly the same ways and when. Plus, write notes of your questions for the neurologist. Ask how confident s/he is that it’s not MS. You could also ask whether they might have any idea about what else could be causing your symptoms. You should perhaps also mention the B6 and B12 supplements and ask if cessation of these can cause symptoms to take some time to wear off.

Best of luck for Tuesday. Hopefully you’ll get a sympathetic neurologist, one who listens and can reassure you without the need for further tests.

Sue

1 Like
7

Hello Helen

MS does tend to move more slowly than what you’re describing as ‘fleeting’. So I’d agree with your neurologist.

Also, you are correct that it’s unusual to have only spinal lesions in MS, but it can happen. See Boudica’s post above. The reason (I believe) it took so long for her MS to be definitively diagnosed is that it is so very unusual to have only spinal lesions.

The problem, or problems, are that the human body is so complex. People have all manner of bodily issues and it can take time to establish precisely what is the cause of symptoms.

I do hope you can find out what is causing your symptoms. Do put your trust in the neurologist. If there are no demylinating lesions in your brain or spine, then there will be no MS. That doesn’t mean you don’t have real physical problems. Just that MS isn’t the answer.

Perhaps your neurologist can suggest what could be causing your symptoms if your MRI does come back clear. You’ve said the neurologist won’t see you again if your next MRIs are clear, but it might be worth writing to him and asking for guidance as to where you should look / to whom you might be referred in such a case?

Best of luck.

Sue

1 Like
8

Dear Ssssue - your response was fantastic. Thank you so much. I think that you have helped my thinking more than anyone else including my friends and family (who have been lovey). It is very interesting thinking about more MS type symptoms. I know everyone is different - however I really appreciate what you have said as even I wasn’t quite aware that I do have a lingering feeling of… well what now?

You have really helped me to think about whether I need to be pushing and what for. I tend to not be very assertive in the medical world because I want to ignore that anything can be wrong with me! I was so grateful that the neurologist was not that worried - and yet he really could not offer me anything in the way of answers. My symptoms are not debilitating but they are strong enough not to ignore. And the first time they lasted a week, now they lasted 2 months and came back within a month. They are not painful yet but they are starting to become painful feelings like bee stings. Also it is a sign of something in my body. The neurologist I’ve googled and he seems good but his specialism is epilepsy so perhaps I can ask to be referred to someone else like you said. If you hadn’t mentioned that I probably would have just left it.

I’ve still got a second MRI of my brain and of my spine so I’ll wait for that. Many many thanks. I hope people helped you as much as you help others. Thanks a grateful person (and worried mother of disabled son that I need to stay healthy for!)

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Hi Helen

Theres a tendency towards what I call neurologistitis. This manifests as you walk into the room (pick up the phone!) to a neurology appointment. You tend to leave your brains at the door!! Then while you think you’re following the conversation, once you leave the room (put down the phone) everything that was said vanishes from your brain.

So, writing down what you want the doctor to know in advance plus what he says during the consultation, or immediately afterwards in vital!

Sadly, this kind of forum didn’t exist for me. I’ve had MS for 24 years. The technology just wasn’t there yet. But I go through phases of answering lots of un/newly diagnosed posts, then get a bit burnt out so stop for a while. I’m glad to be helpful.

Sue

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Thank you for the kind replies. I know the presentation may be somewhat atypical but I’m very concerned and increasingly unwell. I can’t use my bowel at all at the moment, even to pass wind and ive also got atrophy and fadciculations in my left hand. The tingling; itching, burning and prickling sensations all keep ramping up. Every day is a real battle at the moment and I’m very frightened about MS or even ALS. The uncertainty and gradual progression is really affecting my mental health as well as physical

11

Thanks for taking the time to respond, I really appreciate it. I’m worsening a lot at present and can’t digest any food or pass wind/a bowel movement. I also have atrophy in my left hand as noticed by some friends and lots of muscle twitching/jerks. The burning, prickling and tingling through my limbs and on my face is also progressing. It’s a struggle to get through each day at the moment. I’m really concerned about ALS as well due to the twitching, atrophy and weakness. The uncertainty is killing me as well as the progression

12

Thank you so much Sue. I’m sorry that there wasn’t the support available for you at the time. Thank you for being there for others but yes sounds good to also take care of yourself first and foremost.

Hi again Dave, I’m so sorry that you are going through this. It must be very scary. I did not have problems with my digestion but I can sympathise with the horrible feeling of impending doom. For a period of a few weeks I seemed to wake up with more and more things getting progressively worse. When I couldn’t write my Christmas cards I cried. I also had a lot of twitching and my arm felt very heavy all of the time. My face would often feel prickly & numb so I would be constantly touching my face within thinking. I avoided foods that I may choke on because it didnt’ feel like I had complete control. The uncertainty is pretty horrible.

I wonder if you can phone your GP again about the digestive issues? I went back to my GP even whilst waiting for the neurologist and it did help. Obviously again I’m not a medic but whilst feeling constipated it might be good to switch to gentle foods and drink more water - but again the GP can help. I had a child with severe constipation issues and there are things that the GP can help with until you get your MRI and neurologist appointment to find the cause? Hold on there, get support if you can.

13

Hi Dave. Easier send then done but try to stay calm. I have been in your position going through the tests worrying that I had a progressive neurological condition. I had the blood work and the head and spine scans I got given the all clear. I took a lot of comfort from this and my symptoms improved (I still have some but manageable)

My first concern was ALS as it is the worst case scenario. It is extremely rare. There is a great post on the ALS forum that properly explains the condition and helps people rule it out. A lot of it is about failure as in one day you can do something and the next day you can’t. Muscle twitching is a symptom but not meant to be an early symptom

MS is also rare and there are a host of other conditions with overlapping symptoms.