Neuro say MS possible... I'm not sure...

New diagnosis and before diagnosis
1

New here and just have a few questions. It tends to be a very long story, but have had symtoms for over ten years, drs never could find out what was wrong. I live in Canada and Drs have a rule one prob per visit and only 20 min. I have had 5 drs due to moving, some leaving practice ect. Now have had my Family dr for 3 years now and finally got a referral to a neuro, he is ordering a MRI because he suspects MS. My symptoms have been on and off for years but the last two years have been consistent.

im just wondering a bit about my symptoms, I know from reading the forums there is no normal with MS but I am wondering if anyone else has similar ones. Among many things, I have a buzzing in my feet, mostly at night, not painful or numb really, feels kinda like “tv static” I’m wondering if anyone else’s comes and goes or is stronger at night?

i have a major problem with my legs, my ham strings are so tight, thighs are sore, the right leg is worse causing a limp. The more I walk the worse it gets, I start to shake if I do stairs. I was gardening yesterday doing some bending and squaring. When I came in I couldn’t stand without my legs shaking. Do symptoms get worse with exercise? my lower back, upper buttocks is numb, but it’s an internal numb. My skin can feel it seems underneath.

about a year ago I had a stretch of weird problems. I had a lot of pain, then one day at work I got seriously dizzy, super hot, sweaty, and sick feeling. I decided to leave work, when I got to my car I waited for the dizziness to subside, and started driving home. On the way my arm started to get severe pins and needles, and my hands curled and cramped, I couldn’t move my fingers, I got scared and tried to hit the voice button on the car to call 911 but I couldn’t. I was 2 min from a hospital so I just drove there. My whole body had pins and needles and went numb, when I got there they put me in the waiting room for 3 hours. I ended up passing out, my blood pressure dropped super low, they cut my clothes off. They checked my heart, blood ect and everything was fine. I woke up after about an hour. I was told they can’t diagnose me in the ER, and when I was normal they sent me home. This happened three times in about 2 months. But hasn’t happened again since. Can this really be MS realated?

my calf has a weird cramping, and super weird sensation. One night my husband had his leg on my calf and after he turned over and removed his leg I could still feel his leg on me for at least 30 min later. I could feel the pressure and heat of his leg on mine but nothing was there?? Really creeped me out.

last one is the pain I have that wraps from my back to my front around my left ribs, mostly stays on the left. I understand this may be the ms hug. But I’m not sure, it’s lower then what I read about, at the bottom of my ribs. drs have ruled out everything GI related, and have had X-rays. Dosnt seem to matter if I eat or don’t eat it’s always there. It feels like my lower ribs are “folding in” no amount of meds make a difference. Thoughts,

there are many many more symptoms, weak shaky arms, cramping hands, severe pain in left shoulder, neck pain, headaches, pain behind left eye. Cold patches, bubble like sensations in legs. Just really weird stuff.

im 33, things started on and off since 2006, all blood work is normal, GI says normal, OBGYN says normal, vit levels normal. X-Rays ct scans bone density all normal. I’m just not sure, I know I have read many of the same symptoms in others but there are still so many things I don’t have, my eyes seem normal, only had one episode of big grey spot a few months ago, hasn’t come back. Can symptoms show up then leave for good? Sorry for the essay, can anyone give me some thoughts?

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hi

it’s good that you finally have a referral to neurology.

i too, have problems with my legs. buzzing and burning - these happen together.

that static description - i have that too.

exercise sometimes makes everything worse - are you overdoing it? have you got an infection?

if you get over-warm when exercising it will make you feel rough.

ham-strings - you will need to see a physiotherapist, preferably a neurological physio.

if one muscle is weak another muscle will take up the strain and the physio will give you exercises to correct this.

cramps and ms hug can be eased by muscle relaxant meds such as diazepam or baclofen.

these can cause drowsiness so be careful.

it’s good that all the other tests have come back clear. like a full MOT.

symptoms can disappear for a long time and then pop back up,

carole x

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I tend to get tired after just 25steps so I don’t think I am overdoing it, I was once in great shape and did a lot of exercise and now I’m down to almost none beside dance practice. I forgot to mention I get extreme fatigue, need naps most days, not that it helps. I am waiting for my MRI which can take 12 weeks here, so doing some research while I’m waiting. Thanks for the reply.

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well ask for muscle relaxant meds and request physiotherapy when you get to see the neuro or gp.

carole x

5

Well I received my letter in the mail for my MRI. It’s on October 25. I am beside myself I don’t know what to do. Things are getting worse, how can I wait 6 months!? I have been getting pain behing my right eye, like it’s boring through to the back of my skull, my lower rib cage hates me.

I can’t get comfortable. I just want to cry, scream and kick. So many things, my arm feels wrong, kinda pins and needles but not, too weak to hold my phone up. My legs won’t stop shaking, all I want to do is sleep. I called my neuros office and the nurse said he won’t see me Untill after my MRI. I told her it’s not till oct and I can’t live like this I need treatment for my symptoms. She said they can’t treat till they have a diagnosis.

I can’t blow dry my hair, after a min the blow dryer becomes too heavy and my arms too weak. I’m so lost. I called a MS clinic for advice, she said call every other day. I called the hospitals I have made emergency visits to and am getting my medical records for the weird things I have visited the ER for. Then I may have ammo and a time line. What else can I do. There are no help or resources unless you are diagnosed and I can’t get a diagnosis.

The more forums I read the more I’m sure it is MS. My brain says scientifically it could be anything, there are so many mimics. Don’t jump to conclusions. But my body says this is it and I need to get some sort of treatment. I don’t know what else to do.

6

hi

i’m afraid you will just have to wait for the MRI.

this constant tiredness is your body telling you to rest.

don’t argue with it - rest!

your gp can be your best friend - make an appointment and tell hiim/her how you are feeling.

he/she should be able to give you something for your symptoms.

amitriptyline and pregabalin are meds that your gp probably prescribes for other conditions and they are both used by people with ms.

they won’t get rid of your symptoms but just dampen them down.

mindfulness meditation is very helpful so ask your gp is there are any courses locally, otherwise search the internet because there are resources free to down load.

mindfulness helps you to get your mind in a calm place and also can help with pain relief.

good luck

carole x

1 Like
7

Very good advice from carole.

Only one suggestion to add: ask yourself whether time spent on MS forums at this particular point in your life is making you feel better or making you feel worse. If you find that it calms you, then great. If you suspect that it stokes up your worries and makes them loom ever larger in your mind, then you might think about leaving it alone for a bit.

Good luck.

Alison

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I do many things for calming, I get massages once a week to help with the muscle cramping but it also relaxes me, I use essential oils and aromatherapy and things like gardening. The part that stresses me out is the total lack of treatment from the dr. How they really don’t care about there patients. I decided to take affirmative action. I am going to the hospitals I have visited and getting copies of my medical files for the visits to the ER.

i am going to get copies of every test done. I am going to have ammo, then I’ll be going to my family dr and see what she can do. Whether it be referring me to a new place or prescribing something else. I am already on cymbalta for stomach issues and lyrica for nerve pain. I’m on the cancellations list for MRI.

being on the forums actually helps, reading what other ppl are going through and in some cases getting support. I don’t care WHAT is wrong with me, if it’s ms then fine we start a plan to deal, I just want to know its NAME so I can start a path to treatment. I want out of limbo.

the more I read in my scientific mindset, the more I realize it is very likely MS and I need my drs to take it serious and not put me on the back burner.

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I hope you don’t think I was sounding dismissive of your anxiety. I certainly didn’t mean to be: I have too much painful personal experience of anxiety to fall into that error, alas.

One thing’s for sure: having vague neurological trouble is Mother Nature’s brutal crash-course lesson in philosophical patience, offered without the option! I hope that you reach calmer waters soon.

Alison