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ME or MS? Please Help....

Hello, sorry to be asking a question that I assume is often asked, but I am having difficulty and really need some advice. I was diagnosed with ME about 10 years ago. My symptoms vary and are not always present. I have never seen a neurologist and I am wondering if this is an avenue I should investigate?

A brief History… During childhood I suffered bad EBV. Back when I was diagnosed with ME, I was giddy (faint) weak and suffering from fatigue. I had only what I could call “a dead leg”. A couple of years on I became confused and started having bad memory problems. I lost my concentration and was no longer able to read or study. I had an episode of speech difficulty (confusing my words) but this was short lived. I became unable to learn new things, it appeared I just couldn’t remember. I had numerous episodes where I couldn’t remember why I was university (the shop, the bus stop, etc) or even how I had arrived there. I also suffered some mobility problems, I put this down to my general weakness and giddiness.

Since my late teens, it has been known that heat makes me worse. I get very giddy, sometimes my vision appears blurred or it feels like reality is moving. This happens in a hot bathroom, kitchen etc. I started having trouble with speed and distance during my mid 20’s. I have walked into numerous objects (the worst being a poor old blind man and his dog… I felt so bad!). I can see the objects, but they are either not where I see them or I am not walking in a straight line… I can’t tell what happens really. When I become confused I sometimes feel very ill and struggle to grasp things or I can equally feel fine and do something stupid like to wait for the green man to turn red, before crossing the road.

Whenever I get a viral infection, my symptoms seem to either worsen or reapper (if I am well). It can take me months to make a full recovery. During this time, I suffer a lot of pain. I get lower back pain and my dead leg returns. I suffer headaches and fever (mostly night sweats). I have had trouble with my vision. Almost like ripples (only in the corner of my eye). I was told this was a migraine without the pain. My vision also blurs, but only with feelings of being giddy.

Most recently, I began having tremors and shakes. The tremors are mostly in my right leg, but bad enough to make my whole body shake. This has happened on about 6 occasions, when standing. I had an ECG a few months back because my chest felt like it had pressure on it, this feeling returned on several occassions. I also felt tiny (thumb sized) burning sensations in the center of my back. I have experienced spasms and tingling in my legs (mainly the right).

I often have a cough. I also get sore throats, swollen glands and I now appear to be suffering from aniexity or depression. These symptoms are bad enough to have taken control of my life and I am looking for advice to help me take that control back.

Today, my doctor checked my eyes with a little torch and asked me to touch my nose etc. I can pass these tests at the moment. Due to this, he said that I have nothing wrong with me that would suggest I should see a neurologist, but I can see a psychiatrist if I wish. I have agreed to this because I can see no harm in it and I want answers whatever they may be, but I have seen one before (back when they diagnosed ME) and I was told I am fine as far as mental illness is concerned.

I would just like to know if a neurologist might be helpful. I’d like to think my doctor is right, but thought I’d ask the opinion of others who have travelled a similar path. Any advice would be welcomed. Thank you for your time. I hope everyone is well.

Kind Regards

Claire

I forgot to mention my hair is now falling out and I have a weak bladder… does any of this mean anything to any of you?

Hi Claire, mm, a lot going on there! I reckon it would be more useful to see a neuro than psychiatrist. These problems you describe sound physical rather than mental ones to me. But then what do I know? ive only been having PPMS like symptoms for 14 years, thats all!

In that time Ive had no dx, a 95% dx of PPMS, that was changed to HSP, then back to probable MS. Id laugh if I could be bothered. I am sick to the back teeth with it all.

I`ve had 5 MRIs, 2 LPs, 2 EMGs, VEP and gallons of blood taken for tests.

Lesions were shown to me on a 2008 MRI, but they mysteriously disappeared the next time I mentioned them! I was referred to a top MS doc in Leeds.he didn`t want to see me!

It`s a joke, innit, without the laffs!

luv POllx

Hi Claire

Your story sounds awfully similar to mine although I think you have articulated some of the strange symptoms better than I can, but everything you say resonates with me. I would say that you would be better off seeing a neurologist really. I’m in the same long-term member club as Poll unfortunately. Whenever the docs do the tests I can do everything they say (apart from stand still with my eyes closed) but the docs never see me when I’m having one my collapses. Perhaps agree to see the psychologist as well but stress that you would like a referral to a neurologist as well. You may have to be quite assertive and if you can take someone with you that usually helps. Be prepared for a long haul with this but you will find tons of support on this site. All the best of luck Dianne x

Thank you Poll and Dianne, it was nice to find your replies. I’m sorry to hear your both also having problems, but it’s also kind of nice to know I’m not alone. Sometimes I feel down on myself because I can’t find the answers, but hearing your stories is a bitter-sweet reminder that there are just some cases of illness that don’t fit neatly into the doctors little tick boxes. I obviously feel compelled to tell you both not to give up the fight, there has to be an answer… it’s funny how it is so much easier to give advice than to follow it!

Have you seen a neurologist Dianne? or had an MRI? I would be interesting in knowing if they found any lesions as it’s odd that you say you can’t stand still with your eyes closed. This is the only thing I failed on yesterday.

much love xx

Hi Claire and welcome to the site

I do think you should go back and ask your GP for a referral. Be specific and assertive: you do not believe that all your symptoms are unrelated and you believe that they warrant seeing a specialist so you want him to refer you.

However, I don’t know for sure what kind of specialist you should be seeing because some of your symptoms do not sound necessarily neurological (e.g. the swollen glands and the hair loss).

As soon as someone says hair loss to me, I immediately think of thyroid. I could be completely wrong, but it might be worthwhile getting your thyroid function tested if you haven’t recently?

And have you had a complete battery of blood tests done? If not, this is something else you should ask for as many vitamin and mineral deficiencies can cause symptoms like yours.

Karen x

Hi Claire!

As you may already know, the symptoms of ME and MS are very similar. Unfortunately, once diagnosed with ME, it makes it all too easy for GPs to assign all symptoms to ME and be reluctant to pursue any further diagnosis (I know this from my own experiences).

I would definitely ask your GP to refer you to a neurologist. A good neuro should send you for any tests necessary to exclude or confirm a diagnosis of MS and I would hate to think that you are suffering all these symptoms due to something that can be ‘fixed’ such as thyroid or a deficiency in something, which, as Karen has said, could cause some of your symptoms.

If your GP refuses to refer you and you can afford to go private (mine charges £240 for a first consultation and £120 thereafter), some neuro’s will see patients without a GP referral and if you find one who also works for the NHS, he can send you for testing on the NHS and then add you to his NHS list if he thinks further investigation is required.

I could add a load more (!), but rest assured that you are not alone in this hun. Feel free to PM me if you need any more info.

Mags xx