Hi, I was diagnosed last November and experiencing extreme fatigue and heaviness in limbs and hard to catch breath been to see gp who has said my blood pressure is very high. Unsure if this is a relapse and if anyone has experienced this before. Many thanks Sarah
First disclaimer. I am not a neurologist. However I would be VERY surprised if high blood pressure is a sign of a MS relapse. Your MS might be aggravating it of course because of the effects that it has on your lifestyle (eg you might become more sedentary as mobility worsens). Most importantly, we should remember that MS doesn’t prevent you having other medical problems.
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What has your GP said? Lifestyle adjustments? (exercise, diet, smoking, drinking, weight etc?) Or medications to bring your BP down? If you are concerned about any contra-indications with your MS medication, you should contact your MS nurse.
Most of the symptoms sound more like a heart problem.
Yes, fatigue can be a sign of a relapse (but my neuro would not agree) - but then he does not have MS!
What you do not say is what your BP actually is. BP is normally given as X over Y, so anything that looks like 150/90 is a cause for concern.
The higher value can fluctuate quite widely - even the sight of a nurse ready to take the BP can be worth 15 points.
It is the combination of a high diastolic pressure (the Y value) and breathlessness that should be treated as a sign that all is not well. If you get any pain in the chest or upper left arm - even if it goes away quickly - then you should be on to your GP again, or even A&E.
If the breathlessness persists, then you should be back to your GP, anyway.
Geoff
Thanks yes I will. I know my blood pressure is very high for me today it was 156/116 never been like this before so quite scary. Still waiting on nurse to get back to me. And will get a BP machine from doctor on Wednesday but seems long time to wait when already anxious.
156/116? Oh Sarah, that is nothing to do with MS. That is a heart problem. Take a look at:
http://www.bloodpressureuk.org/BloodPressureandyou/Thebasics/Bloodpressurechart
So the first question is: Do you smoke? If so, quit. Right now! (It can be done, I know, I did, 20 years ago).
If you are going to the GP on Wednesday ask about a Glyceryl Trinitrate spray. When you are having trouble getting your breath, a spray under the tongue will make the breathing easier. That will drop the anxiety level and take a little load off your heart.
Beta-blockers (Propranolol, Atenolol, etc) will slow your heart rate down a little, and that helps all the time.
Yes, it is scary.
But, you must stress to your GP that you are really scared (ham it up a bit).
You want him/her to get you plugged into the nearest full cardiac service for proper testing.
I hope I have scared you enough
Geoff
Yes very scary and no don’t smoke. I have just looked on aubagio side effects list and one is high blood pressure so have spoken to Ms nurse who will speak to neurologist. Just trying to rest up and keep calm
Hi Sarah
With Aubagio, you should have had your BP checked before you started on it, and be having it checked regularly whilst on it (along with regular blood tests).
So the real question is that of: Is your reading of 156/116 just a bit above normal, or is it way above normal? If it is way above, then it is probably down to the Aubagio and a transient condition. If that reading is consistent, then your GP and neuro should be talking to each other.
Really, Aubagio is not terribly effective (no more than Copaxone) and it’s only advantage is that it is a tablet rather than an injection. Tecfidera is almost twice as effective, and the risk of PML is minimal.
If you are getting a BP monitor on loan, take a daily reading under the same conditions every day - at a time when you are most relaxed - sitting with your test arm about level with your heart.
If you have a spreadsheet on your PC, I suggest that you record the readings (you only need three rows: Systolic, Diastolic, and Pulse). You can print these off and show your GP, and/or print them in a graph (dead easy in Excel) which is the easiest way to show peaks or troughs.
Heart problems are no joke - I ignored one warning sign, and a few years later had open heart surgery.
With a family you do not want this, but you do want your MS under as much control as possible.
Geoff
Thanks Geoff yes this is way above normal as usually 120/80 I have blood tests every two weeks for aubagio but not blood pressure. Am collecting my machine tomorrow so will definitely do this. Many thanks Sarah
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Blood pressure is so overrated lol. My first ever reading about 1999 was 215/115, the doctor opened his drawer and gave me a box of Propanonal and I had to have one there and then loll…Ooops. I was stressed not with MS as i wasnt ill then but work, and teaching and doing 70 hour days. I am still on one Propananol, and weirdly it helps MS patients.
Now its averaged over the week and runs at 125/65. However, i have taken it and its been 160/90, or 180/75 and if i leave it an hour it goes right back to about 135/70. I never worry about it now, but what i do is i eat healthy and take garlic tablets everyday.
Going back to medication, recently my neuro put me on duxoltine (i think its written that way), and my BP went up all the time, when i read the script it said can cause high BP so i came off it, and the BP went down again.
I think we should have our BP checked even without MS, but a lot of time, it comes down to just having off days, or stress.
My friend was rushed into hospital with a rare heart disease, and her BP was normal all the time.
Try not to stress over it. As to breathless i get that too, my neuro told me it was the fatigue in MS. I have EEG every six months and my heart is fine (touch wood lol). Just relax, enjoy a funny movie, I am sure its either your meds or just a bit of stress. xx
Thank you
I had to wear mine for 24 hours it kept me awake lol.
Big hugs, I am sure you will be fine. xx
Hi all just to say I’ve been checking blood pressure for last 24 hours and nurse did it yesterday so seems like a blip where could have been very anxious when seeing doctor as was thinking I was having relapse so huge relief to see blood pressure is averaging 114/79 but obviously still not explaining extreme fatigue shortness of breath dizziness for which I am putting that down to Ms thanks for your comments x
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Brilliant news Sarah, thats a great BP. May I make a suggestion? Have you ever tried to drink coconut or almond milk, its full of b12, D and every other great vitimin we need with MS, and i have now been on it all the time for nearly a year, and my fatigue improved so much since i started taking it. It took a few months but now i have so much more energy and can do more in the day. I am sure its the milk. I was recommended it by a nutrionist. Also i use Advocado spread on my bread/toast which again is good in Vit D etc and i eat sardines at least 4 times a week. I find my diet is really helping me with the fatigue. If I over do it though i do get breathless. xx
I will have to try that. I do have 3 monthly b12 injection and daily vitamin d tablets but will try swapping milk too. Thanks xx