Before diagnosis - time in limbo

New diagnosis and before diagnosis
1

Dear Members,

I am new here, this is my first post. I am writing as I need some advice regarding diagnostic process ( if this topic has been developed before please accept my apologies).

I am a 34 year old female and last December, for the very first time I started experiencing strange symptoms including:

-waking up with numb hands and pelvis,

-blurred vision,

  • grey spot in the middle of right eye, eye pain

-extreme fatigue exasperated by heat (sun exposure ,hot shower),

-tingling and numbness in hands and feet, coldness in hands, fingers turning white

-muscle cramps in legs, shooting pain in face and in the back

-urinary track infections and urinary urgency

  • leg and hands weakness

  • lack of balance

  • speech problems and hoarse voice

  • tightness in chest, often at night

These were subtle at the beginning, getting worse over weeks until I had an attack and got briefly partly paralysed - hands and legs turned wooden, couldnā€™t move them. This lasted an hour and went away.

Symptoms kept lingering and finally subsided after three months.

Was referred for tests, lumbar puncture negative, blood tests - chronic low white count, C4 low, MRI brain showed tiny spot, spine normal. All other conditions were excluded by blood tests (like lupus,lyme, hiv etc).

After those tests neurologist discharged me, saying its not MS.

At the moment I am still getting the same symptoms (without the paralysys) almost every day but they are very subtle, somehow just lingering in the background, unless I overstretch my self with exercises or expose to heat, then they come back stronger.

Obviously I am pleased that some of my tests were negative but am left in limbo and wanted to ask whether there are any other tests you would know of I could possibly do/push for in order to get an answer to what is going on with my body.

If those symptoms went away completely I would not be bothering with wanting to do more investigations, the problem is that they are not going away and have already started to cause me problems and interfere with my job.

I am aware that this could potentially be an very early stage of MS and that starting the right treatment early is also important that is why I wanted to ask for an advice and suggestion what I could do to help myself in this situation.

Or whether wait and see is the only answer.

Thanks for reading!

2

hi sarra

wait and see is probably what you will have to do.

however this doesnā€™t mean you do nothing.

see your gp regularly and update him or her with your symptoms.

my gp was a huge help in my diagnosis.

he recorded all my symptoms on my medical notes.

regular blood tests will also be helpful.

these may show a lack of certain vitamins, B12 and D3 especially.

you gp can arrange for regular jabs of B12.

D3 can be prescribed but they are huge (like suppositories) so i bought some off the internet.

mindfulness meditation is a useful tool, so try to get on a course - i did the breathworks course for pain relief.

it is important to avoid stress and mindfulness helps to combat this.

hope this helps

carole x

3

Hi Carole,

Thank you for your reply and taking the time to read my post.

I will definitely keep a track on symptoms/how I feel and keep my GP updated.

I had blood tests and all were ok, just folic acid low which I got supplements for and I have been taking since, however I have not notice any difference/improvements in my symptoms.

I am already doing some mindfulness/yoga classes, I work in therapeutic field so positive mindset and good spirit is my second nature really.

Perhaps another MRI would be a good idea, to check whether anything changed. However I heard that changes in the brain do not happen overnight and that it is better to wait for a while before having another scan. Maybe 6/8months is a good idea. There is no way I will agree for LP again. I had sever complications afterwards so that is out of question.

Thank you for your advice.

4

Hi Sarra,

There is only one test you donā€™t mention; which is Visual Evoked Potential. It is obvious why your Neurologist has not done this as you already display classic Optic Neuritis symptoms - blurred vision,

  • Grey spot in the middle of right eye, eye pain

See mult-sclerosis.org

And Evoked potentials | MS Trust

These are safe sites on the Internet. I wouldnā€™t go using Dr Google; there are some frightening untruthful things out there.

As you say have another MRI in six months. If you need help at work see Access to Work: get support if you have a disability or health condition: What Access to Work is - GOV.UK and with your, MRI buy a copy; costs about a tenner; handy as it has been known for them to lose their copy.

Listen to the good advice given by Carol; try not to stress out.

Good luck

George

5

Well crumbs, poor you. Thatā€™s a whole load of symptoms and things going wrong.

Certainly, many of them are things that, taken one by one, might suggest MS as a possibility. But I have had pretty active MS for 18 years now and I still havenā€™t have half of the the things youā€™re having, and certainly have never had any more than two or three of them (or something similar) at once.

Everyoneā€™s MS is different, as they say, but some general patterns are more common than others and the sheer deluge that you have had of stuff going wrong all at once does not sound to me like a typical presentation of MS, thatā€™s for sure.

I am sorry that you are having such a worrying time and hope that you get to the bottom of things soon.

Alison

1 Like
6

Hi Sarra, All that you have listed I have too. They do not happen all at the same time but some each day. So I feel I have no rest at all from symptoms.

7

Thank you George for these links. Like you say I try not to do too much googling. Neurologist mentioned that this is most likely inflammation of the nerves behind the eyes and said it should go away. And it did after couple of weeks. Maybe that is why he never ordered VEP test. In terms of symptoms, that is true, it is quite a lot of symptoms but other then during that attack I had in February where I did have quite a lot of them at the same time, they now do not happen every day. Sometimes it is fatigue, sometimes leg weakness, sometimes eye pain, sometimes waking up with numb hands and pelvis. Urinary urgency mostly went away and my eyes back to normal. One thing that keeps happening on regular basis is sensitivity to heat. I get worse if exposed to too much sunlight or after hot shower so try and avoid this. Kim - I feel for you. That is very frustrating indeed to keep having these symptoms on daily basis. How are you coping with this? Do you have a diagnosis? I think wait and see is the best option. I read my report from the doctor and the diagnosis was (as I kind of suspected) - unclear/possible MS - awaiting further investigations. I am supposed to get back in touch when another ā€˜attackā€™ happens or if my legs fail again. Although still unclear what is going on (keeping positive and trying to hope it will be some benign, not MS) at least there is a plan in place if thigs go wrong again. It is frustrating but well, I canā€™t do more about this. Thanks for your input. Will keep you posted on any developments. Sarra x

1 Like
8

Hi Sarra,

I canā€™ t really give you any advice as I am in a similar situation stuck in ā€œlimbolandā€ but It feels good to relate cause I feel pretty alone with feelings and symtomps.

Iā€™m Also new in this forum and Everything started about a year and a a half ago when I started loosing strength in both of my legs at the same time. It only went on for about a minute and then I regained strength again but still I felt weakness from my legs and a weird feeling around my stomach. This condition got worse during autumn a year ago, therefor I consulted my GP who thought, as myself, it was because of a slipped disc which I have been diagnosed with earlier. I got a MRI to check this but it only showed my slipped disc had got better and shouldnĀ“t really be affecting me in this way. Soon I began getting alot of other symtomps like dizziness, extreme tiredness, buzzing in legs and arms, feeling of water running down the back of my legs but the worst I have experienced is loss of memory, not finding the right words and forgetting names and not being able to finish a thought. When I saw my GP the next time he remitted me to MRI brain which showed I had small lesions in the brain. After this I was remitted to a neurologist who wasnĀ“t very nice to me and I felt like he thought everything was in my head and the lesions on the MRI could be anything. Anyway they did a LP which showed some findings but not enough to diagnose me with MS. Had another MRI in August which didnĀ“t show anything newā€¦Now IĀ“m waiting for a new MRI in six months as I donĀ“t meet all the criteria for MS yet. IĀ“m not experiencing all the symtoms I had during spring and the leg thing was last at the end of July. The neurologists canĀ“t explain my condition and IĀ“m stuck in limboland with noone to talk to and when I say I am tired and people say ā€œme toā€ I just think ā€œno not the way I amā€ā€¦I still feel alot of dizziness and when I am very tired I also have more pain in legs or wrist/hand. Apart from all of this I run alot and training for marathon which seems to make my neurologists think I am to fit to have MSā€¦ The main reason I am writing is to share my thoughts and feelings with people that can say I know exactly how you feel because right now I feel so alone with my symtoms and though I try not to think about it to much this extreme tiredness and the fuzzy feeling in My head comes over me and reminds meā€¦ I want to excuse my English because I donĀ“t use English in writing very frequently anymore as I donĀ“t live in England but in Sweden and found my way here as I havenĀ“t found any good Swedish forumsā€¦

9

PG76 you are not alone, there are lots of us on here going through the same things you are. I would suggest you change your neurologist if you are not happy with him/her. Some of us on here have seen two or three different neurologists. A lot donā€™t specialise in ms, you need to see one that does.

We understand how tired you feel, it goes off the scale of fatigue. I am too tired to even speak sometimes. It is hard to explain to someone who is not experiencing this tiredness.

Good luck and best wishes,

Marjie xx

10

I was very lucky i was in hospital in June had the mri scans the lp and steroids got diagnosed with cis , had another mri scan in july and saw my ms specialist Oct 7 and he said it was ms and i would be started on dmds in due course .

So for me i only had to wait 4 months to be told it was ms im one of the lucky ones i guess , as some people on here are having to wait years which is a disgrace in this day and age with all the tools doctors have at handā€¦

My hospital is the RVI in Newcastle by the way .

Regards to everyone

Iain

11

I am sorry to hear all of this frustrating news. I suppose we do fall into the category of those ā€˜less lucky onesā€™ in terms of the diagnostic process. In one way I feel it is good, as there is not enough damage to our bodies to prove it is MS - which I suppose means disease is not very active - but on the other hand living with symptoms none of the doctors wants to pin down as an illness is hard. Dear PG76, Guzlover, I totally think that the best thing you could do for yourself is to change doctors till you find someone who will be more willing to help. I have found myself that so far it was the eye doctor they referred me to with blurred/double vision who has been the most helpful in terms of pushing for further tests. Unfortunately it is not up to him to make a definite diagnosis, especially if tests are inconclusive. And I did feel disappointed after being dismissed by a neurologist, who had a patronizing manner. The best thing to do (I believe) keep track of all symptoms, change doctors - till you find the one who will be willing to get t the bottom of things, push for the tests to be repeated and if that all fails perhaps go private - to someone who has been recommended.

12

Iā€™m another person stuck in limboland. Iā€™ve just been referred to an eye doctor. If your eye problems return, I would add my recommendation to the others here who have said to push for referral.

Iā€™ve also had the arrogant and dismissive neurologist experience. How come there are so many of them? I saw a new one yesterday, who specialises in ME. He was way more sympathetic and careful. I find it incredible that there are conditions like Parkinsonā€™s and M.E. which have no specific tests, and yet there are still so many neurologists giving the impression that no abnormal test results means you donā€™t have anything. The doctor I saw yesterday was enormously reassuring. Because he took a lot of time to examine me properly (many of my symptoms are triggered / exacerbated by light, sound and touch and the first doctor just pushed on, despite my growing distress). He located some specific problems (muscle tension, which is contributing to some intermittent numbness in particular) and I am to be referred for physio to help relieve that.

So if you really arenā€™t happy, then ask for a second opinion. I took my husband along and wrote down everything I wanted to ask and say as I become stressed during the consultations and lose track. I also wore a mask for most of the exam to cut out light stimulation. So do whatever helps you to stay calm and focussed. I think many of my problems were due to stress. When I changed things so I could remain calm and rational, it gave them less scope to dismiss me.

Good luck. I hope you get some answers, reassurance and help.

13

I also have a whole list of unexplained symptoms and have had a difficult year medically.

First I was diagnosed low in iron and calcium a few weeks after starting supplements I had episodes of fatigue and then on the 2nd day of a trip to Austria I was diagnosed with Pneumonia.

At the end of June I had a mammogram and a month later I was at the clinic having further tests fortunately the results were fine.

It was around that time I was getting symptoms I noticed one morning little twitches in my lower legs which have now turned into bigger twitches like where I feel my little finger move and now my shoulders jerk this often starts with a stabbing or shooting pain somewhere in my body.

I have tremors often all day but invisible and worse when Iā€™m cold, when I asked my husband if he could feel the bed shaking he said no.

Thereā€™s all sorts of other things Vertigo when lying on my right side, an ache in my right arm which is sometimes a dead feeling. Lotā€™s of tingling, often too hot for a few mins at a time and cold hands and feet. Iā€™ve had lower back pain and sciatica type pain in my legs for years.

I saw my GP 7 weeks after the tremors started she did loads of tests and spoke to her colleagues they were at a loss and referred me to a neurologist. She even rang me to check how I was after a few days holiday. I saw a different GP about my knee pain and he said something bizarre was going on with me and heā€™s the senior partner.

I recently heard thereā€™s a 38 week wait to see a neurologist in South Wales where I live.

My Mum had MS but she died of cancer 25 yrs ago.

14

Thanks, I have considered to go back to my GP, who btw is the only one who has actually listened to me, but itā€™s so tiring to have to emphasize oneĀ“s symptoms repeatedlyā€¦but maybe thatĀ“s the only wayā€¦maybe he can help me to a ms specialistā€¦the problem is that I just keep thinking that maybe their right and that I just sit tight to my next MRIā€¦well IĀ“ll think about itā€¦

15

Thanks guzlover, It feels really good to not be alone and to have found this forumā€¦I will consider going back to my GP as I just replied to Sarra, because IĀ“ve already seen two different neurologists but they work together so they seem to say pretty much the same thingsā€¦Recently I checked my medical records and the information about my MRI does not match. The first notes after my first MRI says I have quite alot of small lesions in the brain while the most recent notes when they have compared my MRI says I have just a couple of ā€œlesionsā€ but they donā€™t even call it lesions second time around and this really pā€¦me off but I donā€™t have the energy to question this right nowā€¦but I will ask my GP about it if I get around gooing back to him any time soonā€¦

16

Lelp51, funny you should mention the bed shaking as I often feel that. Really weird, and only I can feel it.

OMG 38 weeks is ridiculous, I think I would be tempted to go private.

Good luck,

Marjie xx

17

Step closer to getting a diagnosis, I had MRI 5 weeks ago and it shows some changes in brain and spine along with inflammation so am now awaiting appointments for Lumbar Puncture and other tests, I am still really struggling with symptoms this is just so hard to live with, donā€™t think I can cope with being diagnosed with ms

18

Sharonyfs.

I was diagnosed with ms 3 weeks ago , i knew i had it before i was diagnosed and it only took 4 months from the time i was in hospital to being told i had it .

You have to be posotive about it and have the mentality of " if it doesnt kill you it only makes you stronger ".

Yes it will change things in your life , ive now forgot what i cant do anymore and consentrate on what i can do .

You dont feel sorry for yourself else you wont get out of bed in the morning dont let it beat you , look it in the face and laugh .

Anyway you havent even been diagnosed yet , you may not even have it .Please dont have a defeatest attitude towards it , yes its MS but its not a killer and it certainly wont be beating me anytime soon .

Best Wishes Iain .

19

When you say ā€˜I donā€™t think I can cope with being diagnosedā€™, if you are, what choice do you have?

And actually I suspect that being diagnosed with MS isnā€™t the worst thing to happen to a person. If you look at some of the posts on here from people whoā€™ve had pretty nasty symptoms for months if not years, and would be happier with a diagnosis than without, because a) theyā€™ll get treatment, and b) theyā€™ll have a solid answer for all the things that have plagued them.

Also, being diagnosed with MS today is completely different to being diagnose disease 20 or 30 (or more) years ago. There are effective drugs to reduce relapses, there are more effective drugs to help symptom relief, there are MS nurses to support and help you to access services. There are also more physiotherapy services, more bowel and bladder services, more understanding generally about MS.

And Iā€™ve sometimes thought what would be worse than MS? MND would be worse, some psychological disorders are probably worse, many cancers are worse. Iā€™m not trying to depress you here, just to think about what you can and canā€™t cope with.

Obviously I hope you donā€™t have MS. And that whatever is wrong is easily fixable. But youā€™ll perhaps surprise yourself, if you are diagnosed with MS, you will cope because there is no real alternative.

Sue

20

Hi, yes I am tempted to go private but my GP has already chased the hospital. By coincidence a colleague at my voluntary job was referred to neurology a short time before me for something else, he decided to go private and was told he needed an MRI and was put on the NHS list but after a few weeks he had it done privately. Iā€™m not sure what they told him but heā€™s now waiting to see an nhs neurologist and isnā€™t happy with having paid so much and being back to square one.

My GP is fairly young and only been at the practice a year but I was seeing the Senior Partner about a knee problem and he described my symptoms as ā€˜Bizarreā€™. I find a lot of people including my husband and best friend rather dismissive at times, my friend is quite a bit older and puts all aches and pains down to age and also the same if you mention eyesight. Iā€™m being watched carefully for glaucoma due to some suspicions the optician had, but now I wonder if thereā€™s any connection.

For me I think itā€™s not knowing and waiting thatā€™s worse at the moment.

Thanks for your reply

Lesley