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View Full Version : 5 months of heck (blood pressure, ALS, and Lymph nodes oh my!)



robin321
16-01-12, 18:53
really hard 5 months. I have had a lot of life changes. A new baby, a new job (actually I bought a business), a new house, and I moved to a new town.
Health anxiety has always been an issue, but it was in check. Meaning, it didn’t take over my life.

Anyway, last September it started with my arms hurting. I was sure I had MS, or ALS. This lasted a month. I went to the Dr, they were not concerned, and it faded (right after my son was born).
I had about a week of nothing to worry about, and then I had my blood pressure taken for my life insurance. It was a little high (135/90) but came down to 123/85 when she took it again. I took it myself the next day, and it was around 128/90. I got a bit concerned about the bottom number… Anyway, the next week I was taking my blood pressure at the pharmacy and got called for my prescription at the same time. When I turned back to see my reading, it was 148/100. I took it again, and it was 155/105. The cycle continued, and it kept getting the same reading. I went to emergency, and the Dr said is was 143, and 138 over 90, and it was prob stress.
I went to see a diff’t Dr, and had a full battery of tests, including full blood, and a EKG stress test. The stress test showed I was out of shape, but blood pressure wasn’t even high during test, just normal. I did a 24 hr blood pressure test, and it came out avg 123/85. I relaxed a little about the blood pressure after.
Then one day while shaving, I thought of a lump in my neck. I am not sure why I thought about it, it was beneath the skin, and I think it was always there. Anyway, I googled and Lymphoma comes up. At the same time, I got a bad shaving infection. My skin got red. All that week I played with my neck, and pushed deep down inside to see if I can feel, move it, etc.. Finally it swelled. I went to a Dr, who thought it was an ingrown hair but told me to come back in a week and I could have ultrasound. Trouble is I moved the next week.
So 3 weeks went by, and I still played with it a lot. I could move the bumps around, which I thought was good and it comforted me. It almost became a stress reliever. My skin was very red.
Then I noticed it was big again, and I panicked. I went to the Dr. I drove 2 hrs to go to where I had moved from. The dr felt all my nodes, and said they felt good, and it just felt like one swollen node. She told me to come back in 1 month. I persisted though, and finally she gave me a paper to get an ultrasound.
I paid and had one done. 3 weeks went by, and I didn’t hear anything. I started to touch them less, and they went down to the point where I couldn’t feel them easily anymore, unless I pushed on my skin.
Then the dr called, and she wanted to see me in 2 weeks. I panicked, and got here to call me. She told me I had 3 swollen lymph nodes, and that it was not necessarily cancer. She said she wanted to see me to check them again, but that if I wanted I could have a referral to an ENT. He could check them, and he has an ultrasound machine in his office and could do biopsy there if necessary.
I asked if I should worry, she said no ‘she wouldn’t lose sleep over it’ but I keep dwelling on what she said ‘not necessarily cancer’. I feel like I have it, and I feel like I cannot enjoy my wife, kids or family. I wake up thinking about it, and sleep thinking about it. The more I see them, the more I think I will lose them.
On the positives, it has gone down, although not away. But it is much smaller, because I used to see a very obvious 2cm bump when craning my neck. I cannot see it anymore, and although not touching lately, when I did tough last, it is harder to find. Before it was quiet obvious. When I saw Dr, had ultrasound, it was at its worst.
I have to wait 5 weeks to see the ENT. I do not know how to cope with the waiting. I am afraid to see other Dr’s, because I am scared they will feel and think they are still up.

Help on coping please!

---------- Post added at 18:53 ---------- Previous post was at 18:50 ----------

I forgot to mention, the radiologist wanted me to have CT scan, but my Dr wanted to see me first, and to be checked by ENT first.

Clow
16-01-12, 19:01
How many nodes can you feel in your neck exactly? I keep pressing ALL OVER my neck an it seems like I have several very small lumps and bumps.

cathycrumble
16-01-12, 19:08
I had and have that BP fear thats why I am ill with my nerves at the moment I dread the next visit to have it taken I wouldnt mind it is ok now. I just work myself up when I think about it or have it taken.

Cathy xx

robin321
16-01-12, 19:09
right now I can feel one. But I think at the time of my test, there was one prominent one, and one other one. Although 3 showed up on the scan.

---------- Post added at 19:09 ---------- Previous post was at 19:08 ----------

it is hard Cathy with BP. And now when I fear it, it is self fufilling. I honestly cannot take it myself, and get a low reading. On the 24 hr test I was sure it was high, but it was ok. But part of me doubts that test, and thinks it must have been wrong. I have to do it again for a life insurance test, and am freaked out.

LauraJay
16-01-12, 20:30
Hey,

I hope this will help somewhat, Ive also had a bout of anxiety come around thanks to lymph nodes in my neck! I found them nearly 3-4 months ago, had 6 doctors tell me I'm fine and that sometimes they can remain enlarged for a long time following infection. Some may never go down at all. They are called 'shotty' lymph nodes. Please, don't google. It will only set you into a state of panic which is what it did to me despite so much medical reassurance.

My doctor sent me to an ENT in the end. He felt my neck and then sent me for an ultrasound to 'close the book' that nothing bad was lurking there. That was about a month ago now, and the radiologist told me then and there that malignant nodes look very different on US than reactive/benign ones...and so I was given more reassurance and told only to go back if they get bigger. I went back to my DR to talk about it and now they think I need therapy for anxiety as I should be fine with it all by now! But I can still feel them, and they are no larger than they were 4 months ago.

If you look at similar threads about nodes on this forum you'll see that its quite a common problem.

Hope that helps and good luck x

robin321
16-01-12, 22:00
Thanks Laura. I am worried though, because the ultrasound technician didn't just dismiss it. They recommended a CT scan because of the 3 swollen lymph nodes.
My Dr confused me, because on the one hand she said 'don't lose sleep over it', and that she didn't think it was serious. But she started off by saying 'not necessarily cancer', which makes me scared of what is in the ultrasound, since she didn't say 'probably not cancer'. I should have pressed further, but I was honestly so scared and shocked.

I am hoping I did this to myself. I was playing with the area literally ever 10min or 15min, or more. I was pushing and prodding. I was moving things, which I thought were cysts but I guess were lymph nodes.
Since I stopped doing this, or more accurately cut down doing it, the swelling has appeared to go down a lot. It is hard not to touch there, because it is almost like I want to reassure myself that it is smaller, or even almost gone. Then I feel better, so I check again. And again, and again. Eventually I feel something (hopefully from touching it) and then I feel crap again.

I am really hoping I had an infection, and did this to myself. But it is scary to get that call back, and the Dr confused me. And I have to wait a month.

And this is the part I hate. Sometimes, not often, but sometimes, I can forget about it for a few minutes. And then it hits me over the head again, like it is saying 'don't enjoy things, you might/or do have cancer'). It is to the point where it is very overwhelming and sucks the joy out of everything.

---------- Post added at 22:00 ---------- Previous post was at 20:53 ----------

Self help by thinking out loud

reasons it may be cancer
- ultrasound showed something requiring further investigation
- the Dr's words... 'not necessarily'
- maybe my other health anxiety problems were connected to this?

reasons against
- this came up at the same time of a severe shaving infection. My skin was purple. I saw a Dermo, who gave me cream to apply. But maybe the nodes stayed swollen? This area has gotten infected a lot
- The area swelled up right after I got stressed about it, and started poking around. If it is cancer, that is a heck of a coincidence.
- The area was infected and red. I have photos. I have read that some lymphomas have a rash, but this is a specific type of lymphoma, and not common. And the rash came after shaving, and playing with the area.
- When I stop playing with it, it goes down, to almost away
- when the rash healed, the node when down. For some reason, nobody gave me an antiobiotic.
- Maybe I damged the nodes so much by squeezing, poking, etc.. I am sure ultrasound technicians are not used to seeing that. I mean, I was at the things 100 times a day.
- my appetitie, enery, etc.. is good. No fever
- The Dr schedules my original appt 3 weeks away from calling. This was after ultrasound. Surly, if ultrasound was that bad she would send me somewhere right away?
- I have Crohns and am on immunispresents since last summer. These can cause lymphoma long term, not such short term. My gastro has been monitoring my blood tests (CBC's) since the summer. I have had about 15 done. Nothing showed up.
- Had complete blood test done Oct 31. White and red blood cell counts were normal. T and B cells a bit low. But my mediciations lower these, so this is to be expected. My gastro saw results, wasn't concerned.
- chest x-ray in September. Nothing noted.
- maybe this is related to my new medication and is side-effect?

I am afraid to tell my gastro about it, since he may check my nodes and I am scared they are still swollen and I will stress.

I tried calling therapist to make an appt. I think I need some help

LauraJay
17-01-12, 09:23
Touching them all the time will make them larger (as I found with my own) so try and resist doing that, as hard as it is.

It really does seem like they are residual from an infection you got from shaving. My ENT and GP both said they see thousands of these nodes and according to cancer research UK, will only see one lymphoma patient every 3 years on average. The chances of you having lymphoma are very slim so perhaps given your medical history of Chrons etc, they just want to keep extra check on you.

You also say that they are moveable and seem to go down, these are very good signs :) mine are moveable too, but I also have a couple of weird ones which are stuck but I was told by one GP that they wernet even nodes, they havent changed in 4 months either so I'm not as on edge as I was say a month ago...still makes me anxious that they are there though. It's horrid.

As for thinking you cant enjoy things...boy do I know where you're coming from! my bf and I are off to America next month and all I can think of is these damn things in my neck! I want to enjoy being excited and kick this anxiety to the curb. It's a tough thing to do.

How large are the nodes? the ENT told me anything below 1cm is considered normal, however I've read threads on this forum from people who have had them for years and have been up to 2cm! Looks like its an individual thing.

From what you've said so far it sounds like they are shotty nodes from infection and I've had 6-7 doctors tell me this is common...some people dont even notice them. My bf also has one (about 1cm) in his neck and he doesnt blink and eye.

Hope you're a little better now x

mum-of-4
17-01-12, 12:41
Hi there

I just wanted to try to reassure you a little about the lymph nodes. I have a node that I can feel in both my armpits. I completely stressed out about them and started to have breast pain too. My dr sent me for an ultrasound to calm me down (she said that she wasn't worried about them at all but sent me for my own peace of mind). Anyway they measured them in the scan and said that although I can feel them they are still within the normal size range. The dr scanning me said there was no cancer there as it looks different on the scan. Funnily enough the breast pain stopped after. I still have the nodes in my armpits and they haven't changed at all in over a year. My dr said that sometimes nodes enlarge slightly due to an infection and never go back down completely.

Hope that helps.