I think i have MS

New diagnosis and before diagnosis
1

HI

I am new to this site.
I haven’t been dx with ms but I know there is something wrong with me, my symtoms are very similar to those of ms and would like someones opinion as i am at my wits end with all this.

It first started about 8 months ago with a twinge in my neck followed by back pain then the pins and needles came, I went to my gp who figured it was just a trapped nerve and refered me to a physio therapist, by that time i was starting to get blurred vision and weakness in my limbs…
To cut a long story short the physio didn’t help, I went to see an optician about my blurred vision who couldn’t see anything wrong.
As my symptoms started getting worse i.e) muscle twitching,feeling dizzy,unable to concentrate, extreme tiredness,stiff neck,flu like feeling…i could go on.
Although i have all these weird symptoms the most frustrating for me is finding it hard to speak like im slurring or getting my words muddled up and my tremors.
Although they are not severe being a hairdresser my ability to speak and keep a steady hand are vital. I am afraid of loosing my job because of this. i feel people don’t understand as i look fine i must be exaggerating or making it up, my bf thinks it’s all in my head.

I just don’t know what to do I’ve had an mri scan which has come out clear and have another doctors appointement next week, i feel low I keep avoiding my mums calls because i know i’ll end up crying and i don’t want her to worry as i think it will kill her if she ever found out i had ms.

I feel this has gone on for 8 months now and i still have no answers I know ms or any neurological disease i may have aren’t an easy thing to diagnose and it can take years but it’s driving me mad being stuck in limbo.

Feel free to share your story’s and symtoms with me.

2

Hi, Natalie, you should ask your neuro for further tests when you see him next week. For example a lumbar puncture, blood tests for B12, lupus and other things. You are unlikely to get a diagnosis of MS with a clear MRI as you have to satisfy several criteria - ‘McDonald Criteria’. I have one lesion and a clear LP and until something else appears on MRI I am in Limbo. I hope that you get answers soon.

Moyna x

3

yea i agree with moyna…you should push as much as you can to get more tests done as its not fair to be left with unanswered questions…i only no what tests they did on me(someone else might be able to tell you more) but i had a mri which shown multiple lesions and the lumberpuncher backed up the fact it was ms-dont no have exactly but was just told it was ms with those two tests, along with my history… im sure they have to follow certain procedures but as long as your seeing various doctors i think you should hopefully have answers soon.

good luck

xxx

4

Hello Natalie and welcome to the forum :slight_smile: My gut feel from what you’ve said is that this isn’t MS. I know that your symptoms certainly do happen in MS, but this is often simply because MS can cause just about anything! Of course I don’t know exactly what your symptoms are (eg where they are, how often you get them, etc) and I’m not a neuro so it’s just a semi-educated guess and I could easily be wrong. However, I’m wondering if something like a vitamin deficiency or perhaps migraine may explain things better than MS? You mention a stiff neck and blurred vision - both of these are very common in migraine. Migraine can also cause all sorts of neurological symptoms, without any headache sometimes too. As I said, I could easily be wrong, but hopefully what I’ve said illustrates the fact that there are alternative explanations for your symptoms. So perhaps that’s what you need to focus on at your appointment: so my MRI is clear… what does that tell you and what do we do now? There are other tests and it would be worthwhile seeing an ophthalmologist about your blurred vision as opticians do not have the equipment or training to check your vision out properly. But please try to keep an open mind: google has a tendency to throw up MS a bit too readily - there are loads of alternatives. I hope you get some answers very soon. Karen x

5

Hi

Thanks for your reply’s, they have really helped.

Maybe i am being irrational, I’ve somehow got it into my head that i have MS but have no proof.I have also had my blood checked and it was fine I was secretly hoping it was just a case of vitamin B12 deficiency, but when i got the all clear yesterday thats when i started panicking thinking it was definately ms, pff ‘idiot’.

I feel so stupid as I know a lot of you really do have MS and you must be thinking who’s this hypercondriac ?! It’s just rubbish being unwell and having to diagnose yourself, as doctors take so long.

I know i have something but i guess only time will tell, there is no point in me getting stressed over this just yet.

Thankyou for your time x

6

Hi Natalie, just to say that we would never think someone with symptoms is a hypercondriac.

Those of us who are dx with MS remember only too clearly what it was like when we first had symptoms… and if it’s not MS you obviously have something going on (as Karen says, possibly migraine).

Take care & hope you get some answers soon,

Pat x

7

Hi Natalie,

Please don’t feel stupid. As someone who has only just come out of the limboland that is the wait for diagnosis, I can completely understand the feeling that “perhaps I’m imagining it”, “maybe the sympton wasn’t really as bad as I though it was”.

The reality is that, as Pat says, you oviously have something going on and whether it is MS or not does not make your issues or worries any less valid than any of ours just because we can put a name to our monster.

I hope you get your answers soon, but unfortunately all things neurological seem to be a long process so it’s important you try not to worry too much and try to live life in the meantime (oh if only I was good at taking my own advice).

Take care.

8

Hi

Thankyou for your messages i really appreciate it.

I had an appointement yesterday at the doctors thinking he was going to send me for further tests as my bloods and brain mri came out clear but i am still getting these abnormal symptoms.

He basically said there’s nothing more he can do apart from referring me to physio or to phychiatrist…I thought, Am i actually hearing this right?! I didn’t know what to say to this as he obviously thinks its all happening in my head. I declined all offers as i have had physio and it’s not helped and i dont think i need a shrink. So i walked out feeling a little bit lost. I just dont know what to do at this point. Am i just suppost to suffer in silence?

Natalie xx

9

Sorry it didn’t go well :frowning: If I were you, I would take the offers of physio and psychiatry. Physio can help with loads of neurological symptoms as long as we really persevere with the exercises. Psychiatry will do three things: give you the opportunity to let off steam and get help with dealing with your symptoms mentally, show the other medics that you are willing to do anything to help and, assuming that the psychiatrist agrees that there’s nothing wrong with your mental health, it will strengthen your argument that there is something physical causing your symptoms. Kx