New, waiting for diagnosis

Allergies, blood and immune system
1

Hello all,

I just received blood work after having mucsle twitching issues (small twitches everywhere on my body, random times), weakness after exercising, restless sleep, tremors in my hands and a feeling of closing of my throat. 

I have had several bladder infections over the years and the blood test says I have an infection now somewhere. It also showed a titer of 1:80. I know that is low but still there. 

For some reason my blood pressure is raising. I am normally low, around 110 over 70. At night I get very restless and my blood pressure is high, ex. 155 over 88.

I'm wondering if the high blood pressure is because I have an infection or because I am worrying about this issue. 

Any thought would be nice. 

Thanks

 

2

Hello Mistaway,are you on any meds for your condition?

3

Hi Mistyway, my BP went up recently, when I had food poisoning

It is now back to its usual reading

 

4

This is Gary's wife and I just wanted to let everyone know that he passed away on January 30 are 28 days of sheer misery caused by this dreadful disease. The very earliest symptoms started about 10 months earlier with a progressive shortness of breath and fatigue. The breathing problem was chalked up to smoking which he tried to give up and had been successful at for his last 30 days. The quick downward spiral began on Jan 2 when the itching began. Within a few days the rash had a good toehold and by the beginning of week 3 the rash was raging and the muscle weakness was intense. CPK levels went from 186 on day 6 to 19304 on day10. After 2 weeks on 40 mg of Prednisone the CPK levels had fallen to 9262, headed in the right direction but still grossly elevated. Gary was miserable from the uncontrollable itching and his skin was so tender he could not stand to be touched, yet I kept him rubbed down with coconut oil which did provide some relief from the dry, tearing of the skin. It is suspected that he had an underlying heart condition that complicated matters, but had not been diagnosed yet. My heart goes out to all of you that are battling this awful disease, Dermatomyositis. Please push your doctors to be vigilant in treating you and do your own research and pass it along to the doctors because they have limited knowledge of most autoimmune diseases and are basically fighting it with trial and error. God bless.

5

Not yet. I have just set up my first appt with a Rheum Dr and it isn't until April 29th. I have a kidney scan Monday for the infection. So hope I will be given meds for my kidneys.

6

Could be the infection that I have. Which the family doc thinks it is my kidneys. Strange that it only peeks at night. Not sure. I have a lot to learn.

7

Why so long to get to see a Rheumatologist? Is that the standard wait time there?

8

My Family Dr set it up. He said it would take a couple months. So I guess so. I was wondering the same thing! 

9

If the family doc feels confident that your diagnosis is DM please push for an appt with the RT ASAP as this disease can take a sudden turn for the worst. The issues with your kidneys/bladder could turn into kidney failure which is life threatening. Sorry, not trying to scare you but I witnessed firsthand how quickly controllable symptoms can turn into no turning back. Good luck.

10

How sad. I'm sorry for your loss. I'm sad he had to go through the pain. I personally am going to stay on top of this. I'm just beginning and am unsure yet what I have but will learn. I too have a rash, started a few months ago on my chest and a bit on my top of back. I thought it was roseca. 

Best to you.

I don't know if you know but you posted this inside of my discussion. Not many people will see your post. You may want to copy and paste into a new discussion. For people that he may have spoke with.

11

NO, you're not scaring me! I have to stay on top of this. Thank you for caring!!! I appreciate the push.

12

His rash also started on the upper back, neck, and upper chest...the typical shawl pattern. Also around the hairline on the forehead then to the scalp and eventually on the back from the hairline to the belt line. The itching was insane. Thanks for the copy/paste suggestion.

13

Hello Gary's wife, I am very sorry to read of your loss.  Thank you for your post.  

I wish you well.

 

14

Sorry for your loss. The discussion started by Gary is here https://patient.info/forums/discuss/new-to-this-terrible-disease-dermatomyositis--359035

if you wish to post in it as well. 

I haven't read this discussion in full but just in case there is any confusion, this group is Autoimmune Disease generally, not just Dermatomyositis. I am pointing this out as the history etc being given here is specific for DM and may not be what the OP was querying. 

Regards,

Alan 

15

Thank you for your condolences and for the posting info. I'm somewhat technology challenged and having some difficulty posting to the appropriate places but I very much wish to share our experience with others that may find it useful. Any assistance you can provide would be greatly appreciated. Thanks again.

16

Hi Gary2015,

I have edited the post in the other discussion and as I replied there if you need any help with the site please click the envelope under my name and you can send a private message to me.

Regards,

Alan

17

I just wanted to let you know my heart is without you. though I’ve no real information to share

I do have some advice from my own  experience –

First of all, don't bother yourself about which is causing the other because right now you are caught in a cycle that can last for years, what with your weakened immune system making it easy to  elevate your blood pressure which just encourages that infection which again spikes up your  blood pressure which then makes you susceptible to infection  …  on and on -you get the idea

So, once or twice a day – more if you can manage it (I do it morning and bedtime)

Get as comfortable as you can and

try to relax into the tremors and twitches and spend about 3 minutes just allowing your body to feel whatever it feels  - do not ascribe any characteristics to the pain and weakness

(By this I mean try not to think that your body is betraying you, or that your muscles are behaving wrongly because your mind is just trying to alert your body that it  needs a different type of care than 8 hours of  sleep and good hydration )

Then

when you are ready, purposefully reach out to each twitcher, briiefly reminding them what it feels like to be "normal" and function well or at least controlled movement

If you pray, now is the time to do so.

after this try to ease into your daily routine. 

I was surprised to find how much relief it gave me to just allow a space and time for my body just feel what it feels without thinking it is bad or trying to punish me or berating myself for exacerbating the pain through something I did,

I know that this is much more difficult to do than to describe or read so don’t beat yourself up if it takes a while before you can think that your body is causing you pain or is out to get you somehow -

Hope this helps  - good luck

18

Thank you, Ea213,

I have been doing exactly as you mentioned, trying to figure all this out. Even though I am telling myself I'm just trying to educate myself, I think it is probably making things worse. :-) I do have to remember to live my life and not allow this to take over my life. 

Thanks again!