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Sick with worry

Hi folks,

Just signed up today, first post and I am in absolute bits.

I have an appointment with a neurologist on Tuesday and feel my best case scenario is an MS diagnosis, but the likelihood is an Motor Neuron disease diagnosis.

This all started about 4-5 weeks ago when I felt weakness in my right foot. Within 7-10 days, the foot is completely out of action other than the toes. ‘Foot drop’. Since then I have been having various cramps in both legs, twitching, numbness and tingling. My right wrist is now heading the same way and already struggling a little bit to grip things. Both the right hand and right foot get very cold and my calve and hamstring is tight on that side too.

I keep waking up in the middle of the night with some part of my body close to cramping and my right wrist, hand and fingers full of pins and needles, numb type feeling.

i know some of these symptoms can be present in MS, but they don’t sound like early symptoms, usually more progressive, particularly the foot drop. However, it all sounds like early symptoms of MND.

​just looking for a little bit of support and guidance I guess. I am feeling sick with worry and on my own. I’m 34, male and don’t have many close friends. And support would be greatly appreciated.

Neil1689, I’m not a prolific responder to posts but your post resonated for some reason. I’m certainly not going to tell you what condition you might have as I think that’s not sensible. I totally get the worry you must be experiencing right now, although perhaps not to the same degree. However, what I do want to reassure you of is some of those symptoms you describe can certainly be present in early MS and I truly do want you to believe me when I say that. Twitches and spasms were my first and longest lasting symptom, as well as waking with solidly numb limbs and of course if you type that into google MND comes up straight away. I was terrified and had an EMG test and then MND was ruled out as a result, although I’ve been told it’s not MS either. My point being, these symptoms can exist in conditions other then the obvious, 2 days until your appointment, try to keep the faith, stay away from the Internet as best you can because if your anything like me you I’ll end up with confirmation bias, whereby you cherry pick the info that says you do have a certain condition and you completely disregard the things that say you don’t, its human nature. Wishing you the best of luck. If you have any questions in the mean time feel free to ask.

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I hope you get some answers soon. You have come to great place to both vent & get answers.

About the only thing this forum will not be able to give you a dignossis.

What I have Learnt since reading this forum is that one day I will read a thread and be thinking…oh sounds

like ms to me & overtime it becomes apparent that they have not. On other occasions I have been reading

& thinking ‘definitely not ms’. And then read that person has been Diagnosed with ms.

so it really is true that it is impossible to read a post and give any useful views, as to the cause of the symptoms.

What a lot of people on this forum can do is truly understand how it feels waiting for a Dignoses.

Thinking of you at this s#%| time.

Thanks for your kind words Cherry.

its the foot drop in particular that concerns me. Over 4 weeks now and hasn’t budged a mm. This was my first symptom. Other concern is that everything is asymmetrical down the right side.

Neil

It sounds like you are in a terrible place right now. Whatever you have at least you’ve only got till Tuesday to wait.

Have you had an MRI and other neurological tests? Or does your diagnostic journey start on Tuesday?

Who has told you it’s more likely to be MND? If it’s your GP, then try to put it out of your mind. Basically, until you’ve seen a neurologist and had all the relevant tests, you shouldn’t start believing it’s any one diagnosis. Only a neurologist can make the decision as to what is causing the symptoms.

Cherry Tree is quite right, there is no rule as to what MS symptoms come first and what appear later. There are so many symptoms which could be caused by MS, it’s impossible to say this is or isn’t MS.

Try not to let yourself get in a real panic. Ultimately, what will be will be.

And if you can, get someone you trust to come to the appointment with you on Tuesday. We sometimes go into an appointment, hear something we maybe weren’t expecting, and all the other information goes right out of our heads minutes after the appointment. Another person can act as a spare memory.

Let us know what happens at the appointment.

Sue

Thanks Sarah and Sue.

No, the GP has not mentioned MND, he only mentioned MS and he has been honest enough to say he doesn’t have a clue what’s causing it.

I know all my blood work came back fine which I believe included Creatine Kinase levels which was a positive as far as MND is concerned.

I was worried about MND because nearly all the testimonies from people online who have this stated that the first symptom they had was for drop. Which of course mirrors me in this instance. Plus the disease is a life sentence and a short, horrible one at that so I guess it’s not easy to get that one out of my mind.

hi neil

it’s natural to worry when our bodies start to play up.

MND is a little (lot) drastic though.

just settle for good old ms then!

or even better something less.

carole x

My neurologist appointment is at 2pm tomorrow. I am now completely paralysed and consumed by fear. Nothing in my life until now has ever impacted me as much as this. It sounds awful, but if I was offered an MS diagnosis tomorrow then I would absolutely 100% accept it. Anything which is not MND. I have now developed a pathological fear of this disease, exacerbated by the fact that many, if not all, my ailments point towards it. I will post tomorrow the outcome of the appointment. Neil x

When you say you are completely paralysed. Are you saying you’re bilaterally completely numb? Bottom half , top half? If you have gone completely bilaterally numb without any feeling I would be suggesting a trip to a&e? Can you still feel if you need to go to the loo?

Im so sorry this is happening to you. Life is so unfair. One more crap night and then hopefully some answers tomorrow. Perhaps spend a bit of time thinking about what you want to ask him/her. Through all the crawly stories you hear of neurologists, for the most part, they are brilliant and know what they are talking about so have faith that you are going to see an expert tomorrow who will do their very best to get to to the bottom of what’s happening to you, as well as hopefully being able to put tor mind at rest. Even without MRI/ EMG/ NCT results, they can tell an awful lot just from a physical exam.

i really hope that this time tomorrow you are slightly more at ease and although you won’t have any immediate answers some of that angst may be gone. Good luck. Let us know how you get on if you feel up to it.

Hi Cherry,

No, not literally paralysed, just in mind.

i cannot function at all due to it on a mental level. Little things like the increased difficulty I have in texting this message are making it worse. I’m so worried that I have presenting symptoms on both the lower and upper parts of my body. The foot drop on lower half and weakness in my fingers/hand on the top half. Would be highly unusual for a trapped/compressed nerve to be presenting like that.

But yes, I am going to disclose my fears at the very beginning in an attempt to at least give the neurologist the chance to ease my fears and also in case the extreme levels of anxiety impacts the physical exam in some way x

Neil

I have foot drop and extremely weak fingers. I have MS. Don’t let the horrible fear of MND rule your life. It would be awful if that’s what you have. But it’s just as likely that it’s not. Hang onto that thought.

Also, that you are still you regardless of diagnosis.

But you are quite right, let the neurologist know that MND is what you are most terrified about.

And I can’t remember, have you already said that you have someone going with you to the appointment? I hope so. They’ll be able to help you remember what’s said.

Please, let us know what happens tomorrow.

Sue

Neil, all the best for tomorrow, hugs

Dear Neil, best wishes for your appointment today and whatever the outcome, there are ways of finding strength.

Gather friends and family around you and groups, such as this forum are truly helpful. New health regimes can help you to take back some control and asking for a good listening ear is a must. I am sorry that you are consumed by fear but this is also normal and is your mind’s way of preparing for the worst, and also remember that increased anxiety is truly part of the conditions that you are describing. I do hope that you get decent news today, kindest thoughts Ali

Hi folks,

first of all, thanks to everyone who has offered support to me here, I really do appreciate it so much. It has actually helped me in ways far beyond my current issue/diagnosis, so thank you all again for that.

The appointment was good and ha helped me beyond words. I told my neurologist about my fear of MND right at the start and felt my blood pressure rise when he said ‘I’ll need to examine you first before I can tell you anything’.

Thankfully, the only weakness found was in my right foot. Which I knew about anyway as is clear ‘foot drop’ and he noted that I could not walk on my heels and the resistance to pressure when pushing down on it was pretty much non-existent. He could find no weakness in my wrist and hand etc so is really only concerned about the foot.

Some areas of concern however. He revealed when he read my GP evaluation that his first thoughts were MS which seems extraordinarily common in Scotland. Something like 1 in every 400 odd people. However, he changed his evaluation when it transpires I had no weakness in my face. He did not seem all that bothered about my issues at the beginning of urination and my fatigue levels, simply because they have been going on for a while and seemed to believe they might be ‘independent’ of this.

in the end he said he believes I have ‘isolated nerve damage’ in the foot and next course of action will be a nerve conduction test on the foot or EMG. He said he will speak to his consultant to determine if an MRI for MS should be done, but he was upfront in confessing that his own recommendation will be against this.

Basically I am now waiting for my GP to contact me with the definitive conclusions. I am going to arrange an appointment for that myself to make sure it gets done.

In the meantime, usual symptoms persist. I woke up at 6am, frozen to the bone, has to put my electric blanket on and my whole right leg was suffering pins and needles. I recall lifting my head once and the pressure from dizziness forcing my head back down again, but it was isolated. I will obviously have to mention this to the GP again, but the only concern I could detect was for the weakness in the foot.

i will let you all know how it goes. Thank you to everyone again. Even if I can get all of this cleared up soon, I will still definitely be hanging around these pages, it’s a great little support group. Neil x

I’m so pleased! I really hope that this had put your mind at rest. Odd things happen to our bodies for weird and wonderful reasons. I’ve had an EMG done and they can usually tell you the results of that test straight away. Sounds like good news though.

Brilliant. At least your worst fears are resolved. And with a bit of luck, some time and maybe some physio or help with the foot drop will end up with you being OK.

Keep letting us know what’s happening though Neil.

Sue

Got a call from the hospital today.

They are sending me for an MRI after all. Wasn’t expecting that outcome and has notched up the anxiety a little.

But I guess a concrete diagnosis one way or the other is the preferred outcome. Symptoms don’t seem to be clearing up on their own, though I would describe the foot drop as being 50% better. Can feel, bend and use the underside of my foot, but is still weak on top and foot still slapping the ground.

Well that’s good news. Don’t let it heighten your anxiety too much, they may just want to cover all bases. Hopefully MRI will be soon & here’s hoping the result is squeaky clean …

Neil, let us know how it goes. When are you going for the MRI ? Meanwhile, I am glad your foot drop symptoms are receding a little bit. Dont worry once you’ve had the test, the MRI will put your mind at rest, as its the best way to double check any diagnosis. Its backup. Im just pleased the specialists are taking good care of you.

I am a bit confused as to how all of this transpired. The neurologist told me that the next step would be an EMG when I had my appointment last week and would be recommending against the MRI. Now he calls me to say I am to get an MRI within the next 3-4 weeks. Would the most logical next step not be to have the EMG first and then the MRI if necessary?