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My doctor doesn't even know. Can you help me?

Hello. My name is Briana and I am brand new to this forum. I was diagnosed only a year ago and I have recently been having a lot of issues and when I went to my doctor and he couldn’t help me, I decided to find a forum for experienced advice. I searched on Google to find an MS related forum and oddly enough, I was only able to find a foreign website (I am from the USA)! I hope there is no violation in not being from the listed U.K. countries, but I am in need of help urgently.

The past few months have been utterly dreadful. I have not slept through the night without waking up at least 5-8 times throught my sleep for the past two months. I cannot bare it any longer. I went to my doctor to get his advice and reasoning, but he gave me 3 reasons to why it could be happening. My blood sugar could be dropping if I eat right before bed; I do not eat at least 3 hours before bed (I usually do 4-5 hours before). I could be getting extremely hot during my sleep due to the room’s temperature; I have my own personal air conditioner faced towards me in my room because of my M.S… And lastly, I could be having nightmares resulting in terror-sweating, but I remember my dreams and I rarely have nightmares.
So, if none of my doctor’s explanations are accurate, what is happening to my body? I have to literally sleep with 6 pairs of sleep-wear next to my bed because every time I wake up in the middle of the night, my clothes are completely drenched in sweat. When I change my clothes and go into new ones, I am so cold that I shiver uncontrollably.
I’m not sick. I’m in good shape physically. I eat healthy. What is wrong with me that this is happening? Is this an Multiple Sclerosis related issue? Has anyone else experienced this and if so, what on Earth can I do to make it at least ease a bit? I am getting so depressed by this because I am only 22 years old and I sleep in a bed with my husband of only 2 years and even though he is extremely understanding, it is embarrassing and gross to me.
I know that it is a lot to ask for to have some normalcy during the day, but I used to find an escape in my sleep. Now, that is impossible as well. Please help me.

Thank you,
Briana McKitterick

Hi Briana,

As a member of the human race you are welcome here. MS (and illness) has no respect for national or international boundaries.

Unfortunately my experience with thermal signalling issues is not great enough to offer any sensible help, but I would wager a bet that there will be people here only too willing to help and share their wisdom & experience.

Good luck

Mick

Hi Briana what a lovely name.

When i read your message i thought you were about mid 30 early 40 and perhaps going through menopause as i was like this when i had a surgical hysterectomy at 27, i just drenched every night freezing cold and horrid.

Then saw your age…but women your age can have hormonal imbalances and yes get night sweats.

The problem with having MS is doctors only ever look at MS symptoms, they dont even think outside the box. You could be having hormonal issues or even thyroid.

Yes it can be triggered through low blood sugar. To eliminate this, why not have a smoothy before you go to bed or something to eat just a snack about half an hour before you go to bed and see if this makes a difference.

Also you could have an underlying infection.

I would think if it doesnt then go back to GP and ask him/her to check your thyroid and your hormones.

I have heard of people with MS with this night sweats, but its usually because they are on certain drugs.

I hope this link will help.

http://www.34-menopause-symptoms.com/night-sweats/articles/how-to-combat-night-sweats-in-women-under-25.htm

Hi Briana,

First-off, I would expect that your doctor is classed as a general practicioner, and not considered to be an MS specialist, therefore his/her knowledge of this condition will be limited at best.

You need to see a neurologist (preferably one with knowledge/experience of MS) to explain the illness and what any symptoms you’re experiencing mean and their likely cause. From there, you can come up with the best way of going forward ?!

Hopefully, this neuro will be able to answer any questions you have and also be able to recommend an MS Nurse that you can have regular contact with.

That would be the usual way things are progressed here in the UK, I hope it’s similar in the US ?

Just want to wish you the best, and assure that - although these pages are seldom visited by medical professionals - there are loads of us with first-hand experience of actually having the illness, so there will often be people who have been through most symptoms you care to bring up (…and I think these pages get frequented by folks diagnosed anywhere between 1-20 years ago, and believed to actually had MS for anytime between 6 months and 35 years so far).

Meantime, I would strongly recommend you read & research as much as you can about MS yourself. That knowledge will help with making decisions and possible ways of addressing symptoms.

Dom

1 Like

Hello Briana,

Welcome to the M.S. Society Forum, but it’s very saddening to hear of young people with MS.

MS has an infinite number of ways of announcing its presence, presenting a bewildering array of signs; many of which baffle medical science. But as Mick, CrazyChick and Dom have said, this Forum has a lot of members with a great deal of experience.

However, there is one thing we all have control over. You haven’t said if you are taking any medication. These have side effects almost as varied as the symptoms of MS.

Check out any meds.

John

Hi Briana

I’m guessing it could be hormonal.Firstly get your bloods done via your ms nurse and get her to make an appointment for you with your Nuro asap so they can manage your symptoms, it’s possible you may have early menopause as symptoms do point that way,especially waking a lot and hot sweats and shivers. Do you get headaches too?

Maybe discuss a trial or some type of Hrt a gel is good and should work within days and you should notice a real improvement.

Are you still having periods? Are they all over the place?

If you think yourself it could be hormonal ask your ms nurse to get you an appointment with a menopause consultant especially as you have Ms they should be experienced, they can arrange for a blood test to see if your overies are functioning correctly.

Good luck

Ann x

Hi Briana

Well, as others have said, you’re really too young for it to be menopausal. Stranger things have happened, but still it’s fairly unlikely. Even though night time sweating does often have a hormonal cause.

I think the temptation is always to blame MS for things that go wrong with our bodies. But it’s not always the case.

So, my thoughts are:

  • Check whatever drugs you take, MS and otherwise and find out whether any have side effects that could be causing it.
  • See your GP, try to get them to do some blood tests to rule out other problems.
  • Ask your neurologist, is it possible that there’s an MS cause?
  • Keep on following up with your doctors. It doesn’t sound normal to be your age and having night sweats like this.

Hopefully it wont stick around forever. And of course, we are very accepting of fellow MSers from wherever they are. Welcome to the UK.

Sue

Hello,

Thank you for responding to my post. I do have an MS specialist at a progressive university here in the U.S. and I do have a referral through my insurance to see my MS specialists. However, as you can imagine, this type of thing does not happen quickly and takes a month or longer to be accepted. I am waiting for approval to see this doctor but I am doing my best to educate myself here because I really hate that this is happening to me. I appreciate your help. Thank you again!

Briana

Hello all,

Thank you so much for responding to me. I was beginning to feel very hopeless. I had a strong feeling that it wasn’t MS and now hearing that it’s not a likely or common symptom of MS, I am really thinking it may have something to do with my medication. I have successfully gotten off 7 different medication and I am currently working on getting off my last pill - anti-depressants.
I know this is very hard to come off of, and I promise each of you I am WEANING off of it very slowly. I assure you, I am coming off of it safely. However, I have had really bad side effects from coming off of it such as extreme mood-swings. I am going to research the symptoms of withdrawal from this drug - it’s called Sertraline - and I will let everyone know what it says.

I really hope it’s not early menopause but from the comments, I suppose that is one thing I have to consider. Thank you all again for your help and support. I couldn’t have asked for a nicer response. You’re all so nice.

Briana McKitterick

Hi Brian’s I am new as well but I am so glad that omy m s nurse told me about this forum.getting back to your night sweats and the lack of sleep.this is happening to me right now.it’s horrible isn’t it?they took me off my h r t.back in April as they thought I had had a stroke,I had been on it for the past32 years due to me having hysterectomy for cervical cancer at the ripe old age of 27 my doc says it’s hormonal and it will and should settle down.

.

Hi Briana,

I just wanted to let you know I was in same position waking up several times at night drenched in sweat. It started when I was 29 and lasted for years I’m now 37. I was tested for lots of things including hormonal changes and nothing came up. It’s only been since diagnosed with ms last year that they have suddenly stopped very rarely happens now I don’t know if my body was just trying to tell me something was wrong. Really strange and I feel for you as it’s so uncomfortable and disturbs sleep. I hope you get answers soon.

Take Care

Kellyann

Briana - l live in UK - and l have had Primary Progressive MS for 35yrs. Recently l joined facebook groups for MS - Vitamin D Protocol North America and High Dose Vitamin D for Autoimmune diseases. They are based on a wonderful neurologist in Brazil called Dr Coimbra who has been treating his patients with vitamin d with great success.

Pharmacuetical companies are not happy as it is so cheap!

Do yourself a favour - and look Dr Coimbra up on Youtube. The sooner you start the sooner you will get better. For me - l have too much damage done over the years so l am not expecting miracles - but l am feeling and looking much better after a few months.

Briana, I am neither a neurologist, but I am a retired LPN with some background in med surg. There are many possible reasons for diaphoresis, profuse perspiration. The fact that your own experience is specific to night time sweats makes me wonder if your physician has tested you for Myasthenia Gravis. I am certainly in no position to diagnose you with this. Neither might you have this. It was just something that came to mind from my 32 1/2 years working as an LPN, ( A Nurse,) good luck, Briana. I wish you the best. I also hope that you are able to discover the etiology of your profuse perspiration. Take care, Margaret.