Advice - Symptoms - Possible MS? - My MSAA Community

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Advice - Symptoms - Possible MS?

wesley10 profile image
15 Replies

I have had severe vertigo and daily migraines since Dec, a few months previously to this I stared losing my balance and feeling dizzy. My eyesight also stated to deteriorate and I was battling with tiredness which I thought might be thyroid or menopause, but both bloods came back normal. I had my eyes tested in Nov 21st and given glasses for long and short sightedness having never worn glasses. Went back last week for a re-test as convinced my eyes have deteriorated again and in 3 months they have jumped up 3 prescription sizes, so more glasses. I am getting pins and needles in my arms, which feel like dead weights. Tingling in my back, extreme fatigue, brain fog, travel sick if I go out in a car or overhead lighting. I have a neurological appointment booked for Wednesday and not sure what to expect or prepare myself for. My aunt had MS. I have been seeing a chiropractor for my back, thinking it is that, but despite seeing her every 2 weeks for 18 months, it is getting worse and she suggested MS. I went to see an oestopath thinking it would be a more gentle solution to my back/neck pain and she also mentioned MS. Am I being overdramatic thinking I may have MS? If I do, how will this impact my life moving forward? I am self-employed and not been able to work much in the last few months.

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15 Replies
Iona60 profile image
Iona60

Hi and welcome! I had similar symptoms to yours and was diagnosed with MS. I was also self employed and was able to continue working for 11 more years (with some help).

I was shocked, but relieved with my diagnosis, as I finally had an answer that connected all of the symptoms.

What to expect is hard to say as MS varies from person to person. Luckily, there are now many different meds to help slow the progression and relieve symptoms.

Many neurologists will wait to diagnoses it as MS until they see some of the symptoms and have the results of an MRI and a spinal tap. They also did nerve conduction tests on me.

I know it is scary, but you just have to take it one day at a time.

wesley10 profile image
wesley10 in reply to Iona60

Thanks Iona60, I keep telling myself it is to do with my neck, or balance issues because I have a weak ankle, etc, but I think I need to face the possiblity. Thanks for your advice, to be honest I am absolutely terrified x

Iona60 profile image
Iona60 in reply to wesley10

When is your neurology appointment?

SueAB profile image
SueAB

wesley10, MS is different for each of us. 30 years ago I stopped to get groceries on the way home from work. I left before I completed my shopping, because the products and the shelves were "dancing" and I could not read the labels. The next morning my right eye was all the way in the outside corner and I had double vision. My PCP thought I could have an aneurism, a stroke or MS and he sent me to a neurologist. That began my MS journey. Today I have moved into SP, but still have a good life. I ride my three wheel trike, swim laps and lift weight. My walking and balance are my worst complaint and I use a cane and then a walker for long distances. Not knowing is the pits and I wish you the best as you get to the bottom of this.

greaterexp profile image
greaterexp

Getting through the testing stage is a bit of a challenge with many MS patients, mainly because the symptoms mimic so many other diseases and conditions. I think it helps to write down all you symptoms and history so you don't forget anything, and write down questions, too.

I'm so glad you are seeing a neurologist for evaluation. You can probably expect to undergo more blood work, MRIs, clinical evaluation, evoked potentials, and spinal fluid analysis, but every doctor is different.

It's so difficult having all these symptoms and not knowing why, so getting a diagnosis takes a bit of the load off. Getting an accurate diagnosis also means you can begin treatment, even if it's only to control symptoms. A DMT (disease modifying therapy or treatment) can be started once you have a diagnosis if it should end up being MS.

I hope it isn't MS, but I hope you get clarity about what's going on. Please let us know how things are going. We truly care about one another here. Though we aren't doctors, we can be good listeners and can share ideas about dealing with the disease.

Be sure to access MSAA's site: mymsaa.org/

wesley10 profile image
wesley10 in reply to greaterexp

Thank you so much, good idea re writing down the symptoms. I have been thinking about them and funny how we make excuses constantly. I havent felt right for over a year, if not longer. Little things I am noticing like being very forgetful and completely losing words mid sentence I put down to stress or possibly moving into menopause. I am 47 years and self-employed with quite a stressful job. Balance issues I put down to muscle problems, as to pins and needles and numbness in my fingers and thumbs. The last 3 months have been dreadful, a real bolt out of the blue with vertigo, eye problems and daily, constant migraines and pain in my neck and back. Again, trying to dismiss as a neck problem, trapped nerve or inner ear infection but doctor not convinced hence the neurological appointment. I hope it is not MS but I don't know what else it could be. Time will tell. Thank you so much for your kind words, it is great to have support.

greaterexp profile image
greaterexp in reply to wesley10

The people here helped me immensely after my diagnosis, especially the first several months. I didn’t want to overwhelm my family, and it’s difficult for them to understand what I experience. Having folks here listen and answer questions was wonderful.

I hope you feel the same support and encouragement I have.

Diva1976 profile image
Diva1976

wesley10, you have found a great site. Your symptoms are a lot of the same as I. But as someone has already mentioned, it mimics numerous other diseases. I will be happy for you to get some clarity once your test results come back. Like someone else said, write down your symptoms. Be ready to talk about how you have been effected thus far. I now put everything in my notes on my phone because the memory is shot & i won't remember what i want to talk about that is important. And if it's MS, it will not be the end of the world. It's just a new normal way of living & accepting! You will be okay. You have managed this far!

wesley10 profile image
wesley10 in reply to Diva1976

Thanks Diva1976, that is really reassuring x

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi wesley10 welcome. Right now, I would just wait and see what your Neuro has to say. 😊

No one wants MS . As far as affecting your life? All I can say, is it affects everyone differently, and in your own mind set. 💕

We are here. So let us know!

J🌠

wesley10 profile image
wesley10 in reply to Jesmcd2

Thank you, I have done my list of symptoms, more extensive than I thought. Will await wednesdays consultation and go from there, thank you all so much

Midgey_Midge06 profile image
Midgey_Midge06 in reply to wesley10

Let us know how it goes. U will be a little overwhelmed after u leave the doctors office. We will all be here for u to help sort it all out.

Oh and if u can take someone with u. It will help to make sense afterwards

wesley10 profile image
wesley10 in reply to Midgey_Midge06

Will do, thank you, i dont feel so alone now x

Texandyroe profile image
Texandyroe

Welcome! I agree with what everyone else has said. Wait to see what your neuro says, and if it does turn out to be MS, don't despair. MS is not a death sentence, nor is it necessarily a threat to your job. If there is anything "lucky" about a MS diagnosis today (2018), it's that there are now many, many choices of treatments. I was able to work for 20+ years after my diagnosis, and the only reason I retired was to move closer to my only grandchild. But then again, as others have said, we are all different and MS affects each on of us differently. Hang in there, and please let us know what you find out on Wednesday.

wesley10 profile image
wesley10

Just an update for you all, MRI scan showed white lesions but Neurologist said this could be age-related. He has made an appointment for me to have a lumbar puncture on 8th May but in the meantime prescribed beta blockers for a migraine. Propranolol was tried first and all my mucous membranes became red and felt like they were on fire, with a runny nose and sore inside of my nose, swollen, bleeding gums, sores around the outside of my mouth, couldn't sleep well and blood pressure when very low. They have now changed it to a different one called Securon also know and verapamil hydrochloride. Only started it today so early days.

Interestingly, when I took the beta blocker Propranolol, it did ease the headaches by about 70% but also stopped the weakness in my left arm, the tingling and pins and needles in all my joints, and the vertigo eased considerably - shame the side effects made it impossible to stay on them. My doctor said it means I don't have MS as the symptoms wouldn't disappear on a beta blocker, but I thought some MS patients are given beta blockers to ease symptoms?

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