Could this be M.S

[Liberty82]

Hi to everyone, I hope everyone is safe at home. I was just wondering if someome could give me some help in how they were diagnosed? In 2009 I started getting pins and needles sensations all over my body, like prickling, tingling etc. I had it for years and it never got any worse but I was finally referred to a neurologist but ended up going privately as the waiting list was so long. I'd hand the usual reflex testing done at my GPs over the years and it was all normal. When I saw the neurologist I explained my symptoms, I can't remember the actual tests or questions but he diagnosed me with small fiber sensory neuropathy. I'd no change in my symptoms but in the past 3 weeks I've been dizzy off and on, more of a floating sensation or like being on a escalator so not actual unsteady on my feet and for the past 3 or 4 months my arms have been going completely dead like the blood wasn't flowing to limbs. Then in this last month my legs, like they were in cement. These symptoms have also been alongside my eye twitching. I also have had some problems swallowing on and off, this has frightened me. I though I could put all the other symptoms down to anxiety except the swallowing as I do suffer from it but I haven't actually felt anxious as such but I every so often get panic attacks out of the blue. I just wanted to ask if you can still have normal reflexes with M.S, I saw the neurologist in May 2018 so could things have changed since then and could possibly be M.S. I know very little about it and all these new symptoms seem to have come at once. Thank you for anyone who reads my long post x

[greaterexp]

Welcome. I’m sorry about these symptoms. We all understand how bewildering this must be.

Did you talk with your doctor about your concerns about MS and about these new symptoms?

There are myriad tests that, along with a good clinical exam, can help rule out or confirm a diagnosis. MS can be sometimes a challenge to diagnose, but MRIs of the brain and, perhaps, spinal cord will usually show changes. A lumbar puncture with spinal fluid analysis can be helpful, but not necessarily diagnostic. Blood work is usually done to rule out other conditions.

I hope you pursue this until you get clear answers. A diagnosis will help get you started on the right treatment for whatever is causing this. Be sure to be your own advocate in getting answers.

We are here to encourage and support you. Please let us know what you find out.

[Liberty82 in reply to greaterexp]

Thank you so much for your reply. I saw a neurologist 2 years ago and I know he did a few tests on me in his office, I can't remember a whole lot of it, just the kind you'd have on your first appointment like pushing my arms down, and reflexes, asking could I feel certain things. Could he have missed the fact that I had MS and diagnose neuropathy? Are the myraid tests the ones I would have had at his appointment?

Unfortunately due to the pandemic I'm unable to see my GP as it wouldn't be classed as an emergency. The waiting list here to see a neuro is 3 years, probably more now because of the pandemic, I irony is that I was at the top of the NHS waiting list 2 months ago (I went on it 3 years ago) but because I'd already seen a neuro privately 2 years ago and was diagnosed with neuropathy I didn't take the appointment. Thanks again for your reply. X

[greaterexp in reply to Liberty82]

The tests I am thinking of wouldn't have been done in the doctor's office. They would be MRI's, lumbar puncture, possible nerve conduction, lab work, etc. And it seems that everything has changed since that visit.

Is there any way that you can get to an MS center, even if it's privately? A place like that could really look at all your symptoms, do appropriate testing, and diagnose you properly.

[Liberty82 in reply to greaterexp]

We don't have MS centres here unfortunately, the waiting list is 3 years for the NHS where I am, I can see one privately but I need to get a letter from my GP and then it's usually a 3/4 month wait to see one privately, I live in Northern Ireland so we have very few here, I'd imagine that it'll be an even longer wait now due to the pandemic and Doctors aren't seeing people privately at the moment as they have all gone to work on the front line fighting covid.

I think MS is looking ever more likely, I've had urine hesitancy for the last 18 months and been totally puzzled by it and been on Dr Google wondering what it could be. The other thing is I've had anisocoria (one pupil larger than the other) in different eyes on and off since I was 17. I distinctly remember the first time it happened because I was totally freaked out by it but I mentioned it to my optician and they said it was benign so I've never really given it a lot of thought after the first few times or when someone points it out. It only happens a few times a year.

The other thing is from I was 16 when I'd have too much too drink I'd get a really painful eye, so sore I couldnt open it the next day and it would stream all day, it was always in the same eye and only lasted a day. I haven't drank for a few years but it would still happen up until a few years ago and would happen every few years. Always when I'd had too much to drink, I'd googled everything under the sun but could never come up with an answer. Now I'm beginning to think there might have been some link.

I've phoned the MS society this morning and they suggested to go back to the neuro so that is what I'll have to do, it's just unfortunate that there is such a long waiting list, even to see someone privately but I know this MS is one long waiting game. Thanks for the replies, very much appreciated x

[twooldcrows]

sure hope you can be seen by an MS specialist ...a neurologist that is a specialist in it ...good luck ...stay safe and be careful...wouldn't want you to get hurt and have even worse things going on...

[pamgarner]

I am so sorry you have to wait so long to see a neurologist ,I would think they would be very helpful(i am no dr.)we all started with different symptoms,cramps, spasms,eye problems walking problems and the list goes on.I think greaterexp said it all correct.being diagnosed with ms. is 1st a process of elimination,then a diagnosis,best to you let us know how it is going

[IFwczs]

Sorry to hear about your symptoms. Most of us here had to see doctors for many years before they got diagnosed with MS. So, unless you are on a waiting list to see a neurologist, you should get on one.

greaterexp is correct in that you will need all these tests. My (50th) doctor diagnosed me based on symptoms, but ultimately the official diagnosis came after an MRI.

Good luck, and keep us posted!

[mrsmike9]

Make sure to write down all questions before you see the neuro. There is nothing worse than waiting all that time, see the doctor, then as you're leaving remember some question you'd forgotten. Also keep a list of all your symptoms and the duration of them if you can remember. Good luck and keep us in the loop!

[agate]

Liberty82 ,

You don't mention an MRI. If MS was suspected, an MRI would have been done. Also it's not clear to me whether any doctor has suspected you have MS. It is possible that the neuro you saw missed something but usually there's at least one abnormal reflex.

If you are persuaded you might have MS, you could try getting an earlier appointment with a neurologist by pointing out to the people in charge of appointments that if you do have MS, it would be important for you to be on one of the disease-modifying treatments early in the course of the disease.

This disease is for life, and you definitely don't want it. Doctor don't want to diagnose it either because it might ruin your ability to earn a living in addition to making your family and social life far more difficult. So they're probably being very cautious about diagnosing MS, and your symptoms don't sound a lot like MS to me, but I don't have any medical training. I hope you can find a neurologist who will see you soon and find an answer to your symptoms.

[Liberty82 in reply to agate]

Thanks, I did see a neurologist 2 years ago after 9 years of odd sensations under my skin, crawling, buzzing, zapping, prickling, stabbing sensations all over my body. My GP refused to send me to a neuro for years because he'd do basic reflex testing said I don't have MS and send Mr in my way. As for the neuro he spent about 45 mins with my asking me various questions and doing various tests like reflexes etc. Clearly he didn't think it was MS because he was happy to diagnose me there and then with small fiber neuropathy and felt I didn't need further testing since my symptoms hadn't changed in 9 years.

It's only very recently I've been dizzy which happens daily, dead arms and limbs with tingling. The urine hesitancy I've had for 18 months. The anisocoria I've had for years and stopped thinking out a long time ago but people point it out sometimes. I definitely don't want MS but I am concerned as most of these symptoms seem to be listed as typical to MS. But as I said that's going off a website, I really don't know much about it.

[agate]

It would be very unusual for a doctor not to order an MRI if MS was suspected. If you get to another neurologist, that might be done, but there are many many symptoms and signs of MS. They also happen to be symptoms and signs of many other disorders. As I said, there would probably have been some telltale clues in your reflexes or other tests done by the doctor. I hope you can find some answers so you can get rid of the symptoms that are troubling you.

[Liberty82 in reply to agate]

Thank you so much for your reply. Yes, I'd hoped that when I'd seen the neurologist that that meant I couldn't have ms, I do suffer from anxiety and it causes very unusual symptoms, some of them can mimic the symptoms of MS. I'm hoping to get an appointment with my GP as soon as I'm able and maybe they can do some basic reflex tests. I appreciate you replying to me and it's eased my fears somewhat.

[Frances_B]

Has your Vitamin B12 been checked recently? Low B12 is one of the MS mimics and can cause neurological symptoms similar to those of MS and like some of those you are describing. Are you following a vegetarian or vegan diet? Many people who decide to become vegetarian or vegan don't do their homework properly about how to achieve proper nutrition while following such diets and can easily end up with vitamin deficiencies - and B12 is one of the commonest ones found. It should also have been one of the tests that the neurologist had done when you saw them as B12 deficiency has to be ruled out before a diagnosis of MS is considered.

Yes, it's very frustrating trying to get answers, and many people in this forum have gone through a long and difficult path to get a diagnosis, but it is not a diagnosis which is made lightly. You'll probably get better answers if you try to avoid asking Dr Google too many questions because his medical degree is an invented $50 one from the University of Cyber-junk, and trying to self-diagnose from the internet is fraught with danger. Be persistent about seeing your GP as soon as you are able to get an appointment. Good luck.