Last reply 1 week ago
Update added below.

Hi everyone. Feeling a bit dispondent. Just saw the general specialist. I reckon he probably thinks I’m a hypochondriac. He is going to speak to the neurologist I am going to see in October tomorrow.

He also said that he doesn’t think I have MS. He said if I did that the tingling, spasms etc would be in one limb or one side…not both hands/legs/feet.

He said that my symptoms could be related to the combination of medication I am on. I am two meds for epilepsy and venlafaxine for depression/anxiety. He said the combo could be causing symptoms. But I have been on the two epilepsy meds since 2012 (one since 1990). Venlafaxine for about 5 years or so. It doesn’t make sense to me that in July I had 4 weeks of intense symptoms.

He also said it could be seizure activity which doesn’t make sense to be either.

I had considered that I could have something like a pinched nerve or nerves, or fibromyalgia or something but with everything I have read trying to make sense of my symptoms MS made the most sense. And I really do want answers. Sometimes when I have the tingling in my hands it almost feels like my hands aren’t my own. Since July/August things have calmed down from how intense they were but still have symptoms.

He said I will probably need an EEG. Doesn’t see harm in having an MRI but will see what the Neuro says regarding that.

I’m thinking I should really try to keep a really detailed diary of my symtoms between now and my neuro appt on 12 October. Sigh.

I just want answers.

Does what he said sound right about the tingling in multiple limbs meaning it couldnt be MS? I know you aren’t Drs but does anyone have symptoms in multiple limbs??

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novemberrain
1 week ago

I have recently started tingling in both feet which started at the same as a UTI. There is definitely improvement but not complete. I told my neuro, his response? “Hmmmmm”. I wish I could be more help. Interested in responses too.


novemberrain
1 week ago

oh and yes keep a diary!


ralee
1 week ago

@sarah_williams

Sorry to be blunt, but what a load of crap! When I had a noticeable relapse in August 2019 (diagnosed Jan 2020), it’s because everything from my belly button down,was affected identically. Thats both legs, knees, feet all suffering the same fate.

At first I was told it might be anxiety, 1 month later they found 1 old lesion and 1 new lesion on spine during a spinal MRI. Then in Dec 2019 they found another 2 on my brain when doing the brain MRI.

He’s either an idiot from his remark or simply just distracting you from the possible truth.

I genuinely hope you don’t have MS. and you get some answers soon.

Take care


sarah_williams
1 week ago

Thanks hun! From what I have read of people sharing their experiences of MS it appears entirely possible to have different symptoms happening in multiple places. Seems like some can be related to old lesions and some new.
I guess I will know more when I see the Neuro and hopefully have the MRI. Last time I had EEG whenever that was it was all fine. I am not buying these symtoms as being epilepsy related.
I think people know their bodies. I was having simple partial seizures for 7 years and always suspected they were seizures but my GPS over that period never considered seizures as a possibility. Major seizure in 2012 confirmed they were seizures as new meds eliminated them.

Will be interesting to hear what others say @novemberrain


novemberrain
1 week ago

@sarah_williams I also have partial (focal) seizures. Diagnosed with temporal lobe epilepsy. I have a lesion in my temporal lobe. Will they link the two? Nope.


itsmewithms
1 week ago

Hopefully you get a Dx…frustrating as there are documented steps and methods…https://www.youtube.com/watch?v=0csvVXatlFo&t=20s

Push on! Good luck-


bernadette
1 week ago

@sarah_williams yes you can get symptoms in various limbs! And I hope the Neurologist you see specialises in MS because the generalist know so little about it. Th e one who spoke to you sounds like a bozo.
If it helps you keep a diary, I did for a while however in my experience Drs have zero interest in them. Which says more about them than it does about anyone else!
Good luck

@sarah_williams @ralee I agree…what a load of c**p! Sorry to tell you this Sarah, but every step of the way you will be made to feel like a hypochondriac. And “specialists” will condescend to you when they really have no idea what the symptoms are like. Trust your body and your instincts and don’t be scared to be pushy (although you shouldn’t have to!)


kathryn_reeves
1 week ago

Yes! What caused my diagnosis was numbness from my armpits down – both sides. I was diagnosed in 1988 and since I have experienced symptoms in just one area as well as symptoms equally on both sides. Best of luck.


sarah_williams
1 week ago

Thanks everyone. @bernadette you made me laugh with the bozo reference. That’s something my mum has always said. 😂 Great word. I shall use it more often!! And yes, the neurologist I chose specialises in MS so hopefully she will be more in tune with the symptoms.
@elisabeth_turner great point about the Drs not knowing what the symptoms feel like. For crying out loud, one of mine has been electric shock sensations in my tongue! So bizarre. The symptoms I experience feel like those described on this forum. Hopefully I will get the Mri soon.


stumbler
1 week ago

@sarah_williams, your specialist needs to read this before they eliminate potential conditions :-

https://www.mstrust.org.uk/a-z/altered-sensations

And you might find the following useful for your symptom diary :-

https://www.mstrust.org.uk/a-z/diary-symptoms


sarah_williams
1 week ago

@stumbler Thanks this was useful.


edmontonalberta
1 week ago

@sarah_williams I went to my Doctor about 10 years ago with concerns. Both baby toes were numb & tingling (they still are)… I knew something was wrong; did not know what…

Had spine surgery just below my skull about 5 years ago since my left arm went completely dead; while not recuperating properly, the surgeon noticed my foot drag. The MRI confirmed MS.

I have no medical background, yet I know my body. Almost everything above my waist is nerve damage. Almost everything below my waist is MS related. The fact that I never complained about anything health wise until my mid-50’s proves to me I am not a hypochondriac.

You know your body better than anyone else; including those in the medical field. If you have a track record of not complaining, the odds are you are not a hypochondriac. So yes, keep detailed (yet concise) notes – then bring them along when seeing your specialists…


chloec
1 week ago

@sarah_williams listen to your body. You know something is wrong so go with it. I found with my dad that we really had to push the doctors to run any kind of test and even then they didn’t believe he was really as sick as he was! What we learnt from that is that you need to advocate for your own health. So stuff the doctor who didn’t believe you. Keep on top of your doctors and make sure you have the ECG and MRI. That way you will have every test you can and if it isn’t MS then at least you’ve crossed something out and you can move onto the next one.


sarah_williams
1 week ago

@edmontonalberta thanks. I have good health insurance so if I have ever been concerned about anything I have usually just mentioned it to my Dr when going for regular appts for medication etc. But that has been over many years. When my depression and anxiety improved I went to the Dr less as that had to be monitored reasonably regularly. Health insurance has enabled me to advocate for my health rather than just brushing things off. That said I’d put up with things like ongoing sinus pain for ages before ever mentioning it or insisting I wanted to have it checked out. Waited years. Tests were fine and the specialists answer was it must be muscular skeletal. No real guidance as to what to do with that. So just put up with it.

No doubt some symptoms may not be connected and just coincidental in terms of timing. Some symptoms I have had for years, like sensitivity to sound whereby I ‘jump.’ Others are new this year.

@chloec I relate to what you said about your dad. And sorry for your loss by the way. My dad was diagnosed with a heart condition in 2008. He had been going to our GP for a cough that wouldn’t go away. That fact that he kept going said a lot since he wasn’t someone who went to the dr much. There were never any real answers. Eventually he went on a day the GP was away. The locum sent him for tests. His heart was functioning at 15% capacity. His lungs were filling wirh fluid, hence the cough. Doctors don’t reach to the more serious possibilities often enough. Dad wouldn’t be here if he hadn’t seen that different Dr. He now has alzheimers as well but we’ve been lucky to have him here for the 12 years since he was diagnosed. As you said we have to be advocates for our own health.

I’m lucky that I live close to my work. I had this sixth sense that it was going to be important in the future, that maybe I wouldn’t be able to drive due to seizures or something like that. It is a 5min walk to school. So handy.

Will let u all know when I find out more… If I am going to have the MRI etc.

Hope you are all well and thanks for your support.


sarah_williams
1 week ago

Update: I heard from the Dr today. He has spoken with the neurologist I am seeing in October. I have to have a blood test to check my epilepsy medication levels, and he is going to refer me for a brain and spine MRIs tomorrow. Hopefully, I will be able to have those soon. I am a teacher and we go on school holidays next week so with a bit of luck I will be able to get them done then, that way the neurologist will have those when I see her. Feels like progress finally.

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