Hello everyone. Not yet officially diagnosed with MS.

Hello everyone…I am not really sure how to begin this post or what to write but I felt I needed to speak with others in the hopes that I am not ‘alone’ in the way I feel about this whole process, life, etc.

Well I will start with the beginning…I have had headaches and migraines that have bothered me for the better part of 10 years. I have gone to several gp’s and they all said different things. Most of the time my migraines, body pain, exhaustion were said to be related to my having small children and that it was expected or perhaps due to depression and anxiety…which I accept I have but it comes and goes in waves so. I had gotten really use to just moving through the discomfort and pain. I honestly had no choice with having the kids, being a registered career for my motherinlaw and watching over my fatherinlaw (they have been separated for over 30 years but like a few minutes away from each other). I also would stop telling the GP’s because I felt it was of no use. One GP laughed at me when I told her that I consistently have a headache but 2-3x a week it would be a migraine…well I felt like I was a joke so I left it and my own family would tell me what I felt wasn’t a big deal compared to their stuff or that its normal and I shouldn’t complain or tell people I wasn’t well…just to carry on…

All forwarding to this past october when a new GP at the surgery I go to actually listened and referred me for an MRI (brain) just to ease my tensions and figure out what other routes we could take. November I had the MRI…two weeks later I got a call saying saying there are multiple white matter foci that are predominately laying perpendicular to the corpus callosum and in periventricular distribution. Also lesions within the left side of the cerebellum and corpus callosum. At that time I couldn’t really react as my husband had nerve issues due to a inflammation in his own spine and I felt again my thing isn’t worth worrying about.

I had another MRI (cervical and thoracic) which showed a lesion. My gp’s keep giving me amitriptyline and it did calm down the migraines but I don’t like how I was feeling on them. I met with the neurologist last month…he said he’s more concerned with the spinal mri and we did a spinal tap the day after…my next appt. is in may but I don’t know my results.

I don’t know what im writing tbh. A thousand things rush threw my mind and I’m hoping the spinal tap is negative but then i think what would be causing all my symptoms…idk tbh I hope someone understands my confusion…

Hi Rid kid

It sounds like you really have a lot on your plate. Just focus on yourself for a while. May is not to far away and hopefully you will get some answers. I wish I could say something uplifting and inspirational but all I can say is take a deep breath and take it one day at a time.
Sending love and strength.
Best wishes

Hey PurpleBubbles,

I want to really thank you for your reply. I really do appreciate your support. I just received a letter the neurologist I have seen is sending to the lead GP at the surgery I am registered with. Unfortunately it seems the spinal tap came back with results supportive of MS. I don’t know how to explain how I am feeling. Relief that something is finally ‘known’, sadness about it and worry.

But hopefully this is all early doors and any treatment offered will help.

I hope you are well Sam. And again, thank you. My prayers and well wishes with you and your family. x


1 Like

Hello,. Sorry to hear you are having this problems. I too am having challenges. I have had various sensory changes over the years but in the last 4 years they are more frequent. I haven’t had a diagnosis but have now been referred to a neurologist, wait time was 30 weeks, 20 to go but no official appointment yet so this could vary. My current symptoms are numbness on right arm which started as shooting pains which woke me up through the night, the shooting pains are not so severe and just feel like mine prickles now - not constant but the numbness and is can’t feel cold on that area, pins and needles in arms lower legs, facial pain that comes and goes but feels like bad tooth ache, a constant sore neck and stiffness, I have changed matress tried different orthopaedic pillows etc but nothing makes it stop, it eases but is always there, headaches, feels like they creep up from my neck, , strange sensations lower left leg, feels warm then goes away, a while ago for about 10 days I thought I had a hair wrapped around my right big toe, first noticed in the shower and kept checking but nothing there, then it stopped. The last few weeks my eye lids are twitching and side of nose. It isn’t painful just annoying. I have also more recently stated saying the wrong thing like my brain can’t find the right word and then comes out with a related word - I might say sit on your chair but I say table, or pick your bike up and I say pick your bag up - very frustrating. My right hand also feels strange, not as able to pick things up or write, it seems to tense up or my thumb goes all weak when I move it to pick something up. I also feel very tired but think because I am sore but it is making me grumpy at my kids and partner. I have been offered gabapentine or amyltriptyline, but don’t want to take a medicine when they tell me they don’t know what is causing the problems, I also don’t know much about these drugs. I do take some painkillers to try and alleviate pain but they don’t get rid of it completely. I guess I didn’t know where to go or who to talk to so came to your forum. I know it might not be ms I just needed to get it out.

Bless hun I am so sorry you are feeling this way! That truly is a long wait time especially is this is something on your mind! Everything you are feeling I swear, now that I look back, I felt on and off since 2016. I keep trying to think when most probably symptoms first started but truthfully who knows. The migraines and headaches are something I have struggled with most of my adult life. I have now been reading up on MS…not alot because I kinda don’t want to freak myself out…but even bouts of depression and anxiety. Even reading about sexual issues…which funny enough I mentioned to my gp once and they were like what do you expect us to do…go to therapy. I was 29 at that time and felt my body wasn’t really mine.

Since finding out I’ve been going through a roller coaster of emotions. My symptoms seem to slowly showing up more or maybe I am finally listening to my body. Usually I just ignore it because I have the kids or I am running around for the in-laws and some stupid errands that in hindsight give me more anger at how I just ignored myself for unthankful people…but I digress lol.

I have taken gabapentin previously a few years ago, they prescribed it for my migraines thinking it was more related to a nerve issue but it did nothing for me. And I just got off amitriptyline only because I did not like the side effects and my sister is a doctor back in the US and she hates that drug lol. I recently kinda forced my gp to switch my to topomax because the migranes were gettings worse.

Other than that the tingling and prickling sensations are always coming and going. Sometimes very lightly and sometimes really heavy where I have to stop what I am doing. Today that shooting tingling sensation down my back is harassing me -_-.

Keep in touch hun and in all honesty I hope you don’t have this and whatever it is, it is diagnosed and easily treatable x

Hiya Ridkid,
I totally understand your confusion. Most ppl here will.
Hopefully you won’t have any type of MS. But, in view of the MRI, lumbar puncture & tests it’s a real possibility.
Forewarned is forearmed & you can prepare.

It is not the end of your world, you live with MS like others do with other conditions. MS shouldn’t rule you.

There is treatment to control the symptoms and you’ll learn to let your mind and body rest.

My advice, RidKid, is it seems you’re putting yourself way too low on the 'Important Things to Sort" list.

I tend to tell it like it is. So, here goes:- You’re letting others treat you as unimportant and possibly you almost believe it.

I assume your husbands’ parents are the separated couple whom you care for/keep an eye on regularly.

With young children, infirm in laws, a home to run & a bad time just to be heard, it must feel like a dark maze to find your way.

On top of those concerns you had regular migraine attacks. You saw a gp who dismissed you saying “that’s family life” and your family can’t see the invisible damage that the tests have proved.

The MRI proves lesions & damage. Yet when you got the call telling you the severity, you chose to ignore it because your husband had inflamed nerve issues. It seems you assumed that is far more important than you, even though your own damage has proof from MRI you believe it isn’t worth worrying family about because husband is more important?

Ok, I do understand, it seems you want to help others … but at risk of your own health.
You’re very important to the family.
No wonder you’re worried sick.

When you see your Neuro (who sounds fab btw), take your husband or another close relative with you. If the Neuro says you have M.S your relative can take the Neuro’s words & advice in a lot clearer than you.
Take a list of questions yourself as your mind will be all over the place.

Your relative can ask the Neuro questions too and explain to your family what M.S is, the damage you’ve got so far and confirm you’ll need support and help to rest, manage the bad days and organise stuff.

If the Neuro can confirm, without a doubt, this is not M.S then rejoice & party. Though there clearly is something wrong which may need investigation.

I’d be tempted to tell your husband and the inlaws to get carers in & ask your husband for more support.

I really wish you well, let us know how you’re going on. Either post here or p.m. me iff you need any info, help or support.

Chrissie x

1 Like

Thank you for your reply. Always thinking of others! I really appreciate it. I hope you do manage to find ways to take more time for you , Chrissy had some good suggestions if they were feasible to your situation. Take care and best wishes. Xx

Hi Rosewood
Your post certainly describes some MS symptoms as they’re sensations you feel. There’s many possibilities (i.e. toothache in your face may be Trimyalgia, but will be proved or ruled out by a Neuro.
Is it poss to speak to the Secretary of the Neuro Consultant. They can work wonders to bring your first appointment.
A 7 month wait in limbo land is unfair.
Good for you to not take Amitriptyline or Gabapentin. At least until you’ve seen a Neuro. That’s a fab decision. GPs just don’t have the time to investigate & not all know enough about M.S.
Neuro Consultant and M.S nurses are usually great.
Good luck to reduce the wait time, let us know how you get on.

Oh, btw, it’s worth starting a new topic with your own issues. This stops mixing in with other’s topics. Most of us MSers have brain fog & forget or get mixed up.
Take care,
Chrissie x

Hey Chrissie x

I kinda got emotional reading your response. You really are so kind, I am trying to be more aware of my own health, and I don't know if it's generational nonsense that has been ingrained in my head where a wife/mother/dil has to be last but it is hard to get out of and I can feel resentment creeping up. 

Thankfully tomorrow is my neuro appointment and I will def keep you guys updated with what is said. Dr. Scalfari really is lovely. The past few weeks have been a bit rough. The tingling sensations are becoming more frequent, especially down my back. I walk like I’m jack sparrow sometimes I swear lol.

I think I am just an emotional roller coaster right now and I thank you all for listening to me. I kinda cringe myself out but I appreciate all the support.
I think immune disorders are very rampant in my family. My younger brother just got diagnosed with celiac disease and my younger sister has had Hashimoto’s for over a decade now. We have a dark sense of humour so we blame my mom because shes auto immune with grave’s and sarcoidosis lol

Thank you again my dear xx

Hi Rid_kid
You sound a lot better than you did in your first post. I was so worried about you.
Keep going and keep fighting you can do this.
Good luck with the neuro x

Definitely feeling a lot better my dear x
Didn’t get a chance to update you guys met with neurologist this past Thursday. He confirmed the diagnosis but didn’t really narrow down what type of MS. He said it’s a grand spectrum and we are not sure where I fall on it just yet. He’s ordered a new set of scans since it’s been 6months since the last. He explained some long term treatment options. Didn’t really give names but said one option was to take two pills everyday for a foreseeable amount of time. Second option is take pills for 5 days and off a year (I didn’t really understand this one) and third would be the infusion once every six months. But I’ve been referred to a MS nurse so any decisions would be made then.

He also prescribe me steroids and modafnil for the fatigue but suggested I wait till after the MRI to get a better picture where I am and maybe a fourth option for long term care might present itself?

My husband went with me and asked questions which was nice cause last time this man sat quietly and wanted shawarma as soon as possible -_-….

He’s being a lot more supportive and understanding.
I think I’m just happy knowing what is what and now I’m going to make serious lifestyle changes to help myself. Positivity is gonna radiate outta me for sure lol

Thank you so much hun. You guys are amazing x

1 Like

Good morning @Rid_Kid, just reading through and from your first post a lot has happened. Thank you for the update, and although there is a lot for you to get your head around as you say you have a diagnosis now that helps you to make sense of your symptoms. Yes, look into the changes that can help you, sometimes our own stubbornness can get in the way and as a result we suffer more than we need to. Great attitude …