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Would love some feedback

Hi everyone, I would love some feedback if possible. I have NOT been diagnosed with MS but I visited my GP 3 years ago because I was worried about certain “things” going on with my body and was told that nothing I was telling him was cause for concern and he sent me away. I was really upset at the time but told myself I must be imagining it all and just left it. Since then the intermittent periods of brain fog, muddled speach and drunken walking impression have gotton a little more frequent. Some aspects never seems to last very long and as I said are intermittent but it’s still there along with the tiredness and the odds days of just not being able to function in a constructive way. For the last few months I have had a sort of weird tingly irritable sensation in my body that comes and goes but is very frustration and I just can’t sit still when it happens. My bladder plays up and my eyesight isn’t great but that could just be the need for new glasses that I have worn for years, I am 50, otherwise very fit and healthy as I am a personal trainer but these issues are becoming a greater concern. Problem is I don’t want to go to my GP although I have moved so not the same one because I feel my list of “things” that I can’t even describe very acurately will get fobbed off again. :slight_smile: x Any Ideas?

Hi Ade,

Sorry to be blunt, but you really need to come to a decision whether you are going to “just live with it”, or go to the doctor in search of proper answers.

Googling and haunting MS forums is only going to fuel your anxiety, without getting any closer to the answer.

Even a person with MS cannot tell you whether you also have it. There are literally hundreds of conditions that can cause similar symptoms - some (but not all) are minor, and very amenable to treatment!

Based on the statistics alone, it is not actually very likely that you have MS - estimated at fewer than 1 person in 800, in the UK. Even rarer than that, if you’re not in Scotland (the odds for the UK as a whole are skewed by a disproportionately high prevalence in Scotland).

I hope I haven’t made you feel unwelcome, but really, you can’t get answers if you don’t want to go to the doctor. I can’t reassure you you don’t have MS, but I can’t tell you if it is, either. Nor will anyone else here be able to.

With the most common form of MS - relapsing remitting - symptoms usually hang around from a few days, to a few weeks or even months. It’s not clear, from your post, how long these episodes have persisted, as you only say “not very long”. If it’s just hours, or even minutes at a time, it doesn’t fit the typical presentation of MS. Technically, an MS “episode”, or relapse, has to last at least 24 hours, but the average is four or five weeks, and much longer is not uncommon. Typically (as far as anything is typical with MS, which is hugely variable) onset of an episode is faster than recovery. So symptoms may develop relatively suddenly - over the course of a few days, or perhaps literally overnight (Once happened to me!), but then fade much more gradually.

Tina

Hi Ade, the most encouraging thing for you is that you have moved and would be able to see a different GP.

I really think you should go and explain what`s been going on.

Dont mention what the previous doc said, as it could muddy the new doc`s thinking.

Go with an open mind and let him or her lead the treatment. If he thinks a referral to a neuro is advisable then go for that.

There are lots of things that could be causing your problems.

luv Pollx

Hello and thank you for the replies. I realise there are lots of things that could be the cause of my symptoms its just that when I research them I more often than not end up at an MS information page one way or another, still not a deffinite conclusion I know. My symptoms can last a few days or a couple of weeks and be gone for similar periods of time. Sometimes the milder occurances don’t bother me so much so I tend not to note there longevity so acurately and also the onset is much more noticable than the tailing off. My sysmptons dissapeared almost complete for around 5/6 months last year but then they were back.

I guess I just wanted to tell someone that I have these issues before I pluck up the courage to see a GP, especially after my last attempt. I find it difficult to tell anyone if something is wrong and have not mentioned this to any friends or relatives and my husband happilly jokes along with me when I make light of my stumbles over words or actions. Though he does comment occassionally on things I can’t hide like frequent bathroom visits and the irritability the weird tingling sensation causes.

Thanks again for the replies, nice to just be able to say that I feel this way.

hi ade

i’m always saying this but vit B complex will do you the world of good.

i was given thiamine tablets for tingling and after a few weeks they worked (thiamine is one of the B vits)

although now i have fully fledged ms i’m tingling again!

good luck

carole x

Hi again.

Hope we havent put you off talking about your problems.

I do hope the visit to the new GP will bring some positives for you.

Keep in touch and let us know how you go on, yeh?

Be good to yourself.

luv Pollx

Thanks Carole for the heads up on Vitamin B complex. I do take them as a matter of course when I remember. I will concentrate on taking them more regularly. I hope they start to give you relief again soon. I am more in agreement with vitamins than drugs. I suffer from chronic back pain but won’t take anything for it. Not trying to be a martar or anything just don’t like the idea of putting drugs in my body for the est of my life.

No not put off at all thanks Poll. I’m one of those people that just has to get stuff sorted in my head before I say anything to anyone and this was the only way I could try and discuss it without alarming family and friends.

Unfortunately I come from a family of fuss pots where every minor issue is a catastrophy you know, so discussing any concerns with them is a struggle. Very happy happy to be able to come here and have a chat.

I have agreed with myself that I will go see my doctor and have set myself a time limit of the end of May. I have so many things going on this month that sooner isn’t really an option.

Yes. I will let you know how I get on.

xx

Hi Ade, I’m also new to the forum and like you I put off going to my GP. I decided to go because my symptoms are now intolerable and causing me concern, they have gradually got worse with new ones over the last 12 months.

I’m now waiting on a Neurologists appointment and know it’s likely to be something nerve related but not necessarily MS. I just need to find out what it is so I can start treatment to improve my quality of life.

You’re clearly concerned about your symptoms so go to your GP and keep going back if things don’t improve.

Good luck x

Good to read you are sounding a bit more positive.

Look forward to reading how you go with the new GP.

luv Polllx

Well, went to see my GP and had a hard time describing the feeling in my legs and other body parts. First thing she said was that she had never been presented with such a senario and was baffled. Great, cos that really helped my nervousness about going in the first place. Then she says the tingling creepy sensation I described could be sciatica. I tactfully tried to say I didn’t think so, had that before and it wouldn’t account for my upper body joining in. Mentioned that it feels more comfortable when I’m moving about, she said restless leg syndrome, again, in your upper body?

Next came the week bladder moments and the doc rushed a prescription for antibiotics out of the printer so fast I nearly got up and left. She said I could have a Urinary infection. I tried to point out that it was lack of muscle control when the tingling is bad being the problem, not an increased need to pee. That fell on deaf ears. I will not be taking the tabs.

So I came out of there with a blood test form a prescription and told to also take 2 paracetemol 4 times a day. Come back in a fornight.

I had the blood test yesterday. Usually I have blood that flows faster than water over Niagara Falls but the phlebotomist could hardly get a drop out of my right arm for some reason so 2 “little scratches” later I was done. Appointment next Friday for the results.

Didn’t even like to mention the other bits and pieces that are bugging me. Makes you feel like you’re making it up. Absolutely exhausted this week, seems as though everything I do at the moment is an effort, not sleeping too soundly either.

Ho Hum :slight_smile:

Well, it’s a step in the right direction at least. I think, if I were you, I would try a GP with more neuro experience if you get nowhere at the Friday appointment, if there is one in the practice? Otherwise, you could always try the direct approach: my symptoms appear to be neurological so I would like a referral to a neurologist please. If the GP asks what you think is wrong, don’t mention MS. Better to say that you don’t know / have no idea, but would like to see an expert to get some help with whatever it is. Karen x

Hi Karen, thats for the reply. Rediculous really isn’t it. Everything surrounding a suspected case of MS seems to be a bit cloak and dagger. I have read other posts elsewhere that suggest not mentioning to a GP that you think you have MS.

Oh well, we will see what happens after the blood results. If my GP just says go away there is nothing to worry about I will have to say something. This has been going on for about 3/4 years in a very minor way but this time is really getting to me. Nearly 4 weeks now of various much stronger symptoms. Never been that long or this intense before.

hi ade

good advice from karen above re asking for a referral to a neurologist.

also regarding bladder problems there is help for these symptoms, ask your gp for referral to a bladder clinic.

i am absolutely made up with the treatment i take for my bladder.

carole x

Hi Carole.

It’s great to hear that a treatment for something works. So many stories these days in so many areas that treatments are just not effective. I will wait and see what happens at my sheduled appointment and then with all advice in mind take it from there.

My husband tactfully mentioned MS last week although I hadn’t said a thing to him about it. He isn’t very medically minded so I was surprised it had entered his head. Just makes me wonder all the more.

I had semi numb neck and shoulder last night. Not painful just weird, had it before loads of times but never thought too much of it in the past. It’s only really when so many little things become persistant and a little more intense I guess that you start to worry.

I must admit that we are very anti pills, treatment and the medical system in this house.

Oh well, see what next Friday brings :slight_smile:

Heck,

Just read about the electric shock feeling related to MS that can happen when tipping your head forward. I had that 4 years ago when I first went to the docs and was told that nothing he was hearing was of any concern. It lasted months on and off.

Bad muscle spasm and nubness in my neck last week and have had quite a few either mixed up or missing words during conversation over last few days.

Don’t really want to go back to my GP on Friday.

Went back to the docs, accompnied by my husband, great way to start his birthday off. My blood results were clear. I saw a different doctor due to a time mix up but that was a good thing. The new doc was very thorough and she did not try to fob me off. I had some more blood tests today for diabetes, folate and vit B12 so have an appointment to see her again this Friday.

She asked a lot of questions not previously asked and did a lot of examining and said after we have these blood results we will see about a referal to neurology. Apparently the previous doc mentioned that in her notes although she had not said anything to me. I wish she had because at least then I would have felt like she was listening.

The last two weeks have not been great. The tingling has been everything from almost unnoticeable to strong enough to wake me up. I am suffering from fatigue, I just want to lie down all the time and have had some minor problems with normal brain function, some bits of words missing or occasionally jumbled. Last wednesday I had a bit of a struggle with working out money and giving change whilst doing my bit of voluntary work. Many errors while typing and having to correct them.

I am currently more convinced than ever that I have MS. My overall sysmptoms are just too in line with it and it has been upsetting me immensely. A few tearful moments on my husbands shoulder, we have only been married12 weeks and now this…

Hi, glad the 2nd doc seems to be more on the ball and talked about a referral to see a neuro.

im sure thats what you need.

Now, with my own experience, you may want start to widen your thinking on what`s causing your problems.

For many years, I presented with classic PPMS symptoms. I had 4 MRIs, 2 LPs, 2 EMGs , a VEP and oodles of blood tests.

Nothing ever proved MS, so I was given a 95% diagnosis of PPMS.

Back in 2010 a different diagnosis was made…hereditry spastic paraparesis!!!

There is no-one I know of with similar problems to me, in our family.

So now I wear the tag, Spastic Paraparesis/cause unknown.

I`m not suggesting you have that, but just wanted to say that I was 150% convinced I did have PPMSb but I was wrong…I think!!!

Good luck with your journey.

luv Pollx

Thanks Poll, all a bit of a mind field. No one should have a tag of any sort, it’s just not natural.

Good health is basically a simple thing but unfortunately we are all brainwashed into eating so much crap these days we all end up diseased. The medical profession knows noting about nutrition and healing they only know how to dish out drugs, half of which don’t work. Food is the only real cure for any ailment.

Having gone off the rails a bit recently I have now put mysalf back onto my previously healthy diet and I am confident things will improve while I am waiting for a diagnosis.

I’m going for a walk in the sunshine, get my dose of vitamin D.

Ade x

Well second lot of blood test are clear. The doc, still baffled by all accounts has referred me to neurology and for a nerve conduction study, never heard of that one but am greatful for her doing something.

I have been prescribed Gabapentin tabs for nerve pain. Does anyone know anything about those. I am reluctant to take them but will give it a go for the time being.

This week has been awful, really bad tingling, fatigue and episodes of brain malfunction (thank heaven for spell checker), feel a bit lost to be honest. Keep hoping it will pass soon as I definitely don’t feel like myself at the moment.

Ade x

Gabapentin is used a lot for neuropathic pain. Many people find it very helpful so I would recommend giving it a go. Build the dose slowly to minimise side effects and to ensure that you are taking as low a dose as possible (little point in taking the maximum dose if the minimum will do the trick).

Glad to hear your GP has done a referral. Fingers crossed the appointment doesn’t take too long.

Kx