Last reply 1 year ago
Getting a Diagnosis

Hello, I am a 33 yr old female with 3 children. I have just recently begun to experience symptoms that I fear are MS and I wanted to hear some others stories around first symptoms and diagnosis process.
My story started with hand pain, both hands but predominantly my right. I had bad pain and trouble gripping things, doing fine motor things like braiding my daughters hair, and holding heavy items for long periods. I also had tingly in hands, thumb, and up arms, and weakness in arms. My tingly was often at night and in my thumb and I thought I had carpal tunnel (in sales and type a lot for a living).
Fast forward 3 months – I have been to hand specialist (started out there suspecting carpal tunnel) and gotten tested for RH factors, ANA, nerve conduction study. Nerve conduction was negative for CT. RH factors were negative for rheumatoid arthritis (according to hand doc) and ANA levels only slightly elevated 1:40. He referred me to GP.
Between that appt. and GP, my symptoms increased and spread. Tingly and cold sensations are in hands, arms, legs, feet, toes, and even scalp. Very sporadic and not the same day by day or hour by hour. There have even been a handful of days “symptom free”. One big one is the soles of my feet – especially in the morning, are tingly with prickly/stabbing pain when I walk. Each step I take around the house is “ow, ow, ow” with the steps. This is worst with bare feet hitting the floor, slightly better when wearing shoes.
I have a low grade fever almost every day – late morning to early afternoon. By low grade I mean 99.2 to 99.5 and my dr. told me that doesn’t even count as a fever. To me it counts, as I normally run 98 degrees or even lower, and when I spike these I can always tell as I feel it in addition to exhaustion.
I have had restless leg syndrome at night making it hard to fall asleep a handful of times.
The only other odd symptom I’ve had has only occurred twice (thankfully!) and it has been sporadic itching all over my body. It started in palms then moved and jumped to my body parts randomly, keeping me up and scratching until wee hours of the morning. Very annoying.
I went yesterday for blood work from my GP and he called for thyroid testing, CBC, metabolic I believe to rule out thyroid, vitamin D defficiency and diabetes. I just got the call that all that bloodwork was normal.
I do have a follow up next week where my GP will be reviewing bloodwork results from RH factor that had been called for originally by the hand specialist. When I told GP the hand doc. said I didn’t have rheumatoid arthritis, he told me that diagnosis is not that cut and dry and he needs to see bloodwork. It’s being sent to him so I guess I’ll hear his thoughts next week at follow up.
I think at this point I probably need to be referred to neurology. I just don’t know next steps or what to do and am feeling a bit crazy. I might be finding a new GP as well since mine isn’t the most understanding and tends to make me feel like a hypochondriac. But this is definitely not normal for my body and my active lifestyle as a mom of 3 is suffering.
I would appreciate any insight in to your experiences, diagnosis steps and lengths, or your thoughts on if my symptoms sound like MS.
Thank you!

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There are a number of things that it could be but MS definetly sounds like a possibilty. @stumbler has a number of good posts on what to do next. I think pushing to get an MRI is probably the most important next step regardless. Clearly you have something going on, so a scan of the brain and spine makes sense to me (though i have no medical background).

What country are you in?

Regardless of what you have, i think getting familar with MS will help make the most of your appointment next week. Being familar with the options will put you more in the drivers seat with your dr and he cant easily brush you aside. I would read information from the MS society in your country and I personally find the overcomingms.org site very helpful as well, though there are many others, but I think that presents a fair overall and solid starting point.


imbarca
1 year ago

@mewee320 sorry you’re going through this. MS can take a long time to diagnose and lots of things need to be ruled out first. The symptoms are highly variable. My initial symptoms were tingling and numbness in the hands and feet and mild weakness in my legs as well as a tight feeling around my rib cage known as the MS hug. But the next person you ask might tell you it was a change in their vision or loss of strength in one arm or slurred speech etc etc. There’s no way to tell from symptoms alone. Even l’hermittes sign (an electric shock type feeling down your spine when you bend your head forwards) which is very common in ms can be caused by something​ as simple as vitamin b12 deficiency.

So yes, your symptoms could be ms, but there are other explanations. I’ve not heard of raised body temperature being a symptom either. The main thing is to keep pushing until you’ve got an answer. I hope it’s not MS, but if it is, it’s not the end of the world, there’s lots of treatments available and more being researched all the time. And great support networks like this one. Good luck.


lucyh
1 year ago

Hi @mewee320 , first things first, get rid of that GP!!…mine thought I was an attention-seeking hypochondriac for many years, to the extent he offered me a consultation with a psychiatrist when I turned up for an emergency appointment to say things had become much worse than usual…it turned out to be, on top of MS, an ectopic pregnancy. GPs like this are dangerous, as they will believe nothing you say…you are like the boy who cried wolf too many times.

Secondly, as others have suggested, get an MRI etc.

Thirdly, find a ‘champion’…someone who will attend appt.s with you to ensure you are treated fairly; they can also ask questions so you get a more complete picture of what is going on (it’s a pain to leave an appt. to have that ‘doh!’ moment when you realise all the things you should have said 🙂 )

As you can see, it’s as much about convincing health care professionals that you genuinely have a problem as it is about having, for example, brain lesions.

Best wishes with it xxx
PS keep on with sporadic thyroid blood tests, my under-active one was very slow to show up on blood tests


Anonymous
1 year ago

As ever there’s vast amounts of sence coming out of this lot. I can only add your persistence so far is admirable & keep going it’s your health so keep kicking doors till your satisfied.
Well done & good luck
TTFN


aggies
1 year ago

Hi there, I am a 38 year-old mom of four and am in a similar situation. I do not have an MS diagnosis, as my MRIs show no lesions, but not Neuro suspects that I am in the early stages. I have made peace with the fact that I am in “limbo land,” but my Neuro has me on a very holistic treatment plan, including vitamin d suppl, b12 injections, and some strict dietary changes.
My suggestion– find a good neuro, and try not to focus or dwell too much on symptoms. I have learned that causes a snowball effect of big stress! I know this is eaiser said than done…especially when your body is doing weird things 🙁
You may also want to try something like the whole30 diet and see if your symptoms improve by removing certain foods…i noticed a huge improvement when I cut out sugar..Also- have you been tested for Lyme’ s Disease?
Good luck- I hope you get some answers soon!!

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