This has been a rough journey;
Let me start by saying thank you for listening....It helps just to be able to get this out of my system...
My symptoms have really escalated in the past 4 months,,,
tooth/jaw pain (feel extremly dehydrated even though blood work neg)
shortness of breath/feeling of not being able to get complete breaths
extreme neck pain/upper back and shoulder sometimes radiates down the arm (had neck xray &Mri normal)
very bad chest pain that will radiate to neck,&arm,arm will feel week
sleep apnea/insomnia (newly diagnosed) extreme fatique eyes will burn from fatique
abdominal pain & mucus in stools (just had cat scan normal)had 2 colon polyps removed 2 yrs ago they were benin
right eye twitches
strange like feelings in leg and back (feels like something crawling)
very bad headaches
feels like fever/flu every day for 3-4 months now
face will turn red very often (cheeks)
very low vitamin d
just got over hepatitus from overuse of aceteminthan
urinary leakage and urgency
mitral valve prolapse
I do have impacted wisdom teeth
I have had so many tests Mri (neck &abd),blood work, cat scan (abdom)my thyroid tested ok even though neck appears swollen
gallbaldder removed,colon polyps removed,
family history of mitral valve,heart disease,muscular dystrophy,strokes,fibromylagia
wondering if I should pursue fibro or Ms I don't think colon problems would cause all this??? Thanks again
Hi, I am new here too. I can only relay what I have been through and it has been tough. Nerve conduction tests, the brain MRI, and I can't remember what else........My DR started with an MRI or the brain to rule out leisons (that would maybe be MS) no leisons.
Went to a great rheumatoligist and he confirmed fibro that my PCP suggested 7 years. It has been a long road and it isn't over yet. I need to find the right meds to get this pain under control/ So far we haven't gotten the meds figured out yet.
Good Luck......OH BTW I just had a colonoscopy and had 2 polyps removed myself
Thanks for your comment ...i have been to the pcp and they tested for arhritis that was normal ,thryoid was normal, they never even said fibro just wrote a script for iboprophan 800mg 3x day,and 50,000units vitamin d..I have hypoclcemia and that is why i think he prescribed the ibo? my bloodwork comes out fine..I kept questioning because i have felt worse evreyday...I though i had an infection of some sort but it is not clearing i have had problems for 17 yrs now..But this last 4 months has been dibelitating..It takes evreything for me to go to work.When i get home i am curled on the couch in unbearable pain ..also alot of chest pain as of lately... I'm sorry that you are going through this if that is what i have i want to be tested for ms ..I know i have had Md in my family very bad.. Do you know if it needs to be a rheum? or can the primary prescribe tests and meds to rule? Yeah i meet with the gastro doc next wk because my recent bowel issues i think they will want another colonoscopy. I hope you keep in touch ..Hopefully we can update and feel better soon!!!!!!!!!!!!!!!!!!!!!1
Hello and welcome,
It seems like you've got a lot going on. Am I right to gather that you have not been to see a Rheumatologist or an Endocrinologist for further testing? If this is true then I think you need to get referred right away. I think with your symptoms (especially the hypocalcaemia, which can sometimes be caused by hypoparathyroidism) something else maybe going on.
I would have a full work up done by the Rheumy and also an Endo and a full thyroid panel done by the Endo including testing for thyroid antibodies. Many times PCP will only test to see if your TSH is functioning properly and if that comes back normal they don't pursue any further tests. You can still be suffering from thyroid disease and not even know it without them digging further.
You may want to see if you can post a question to Dr. Nicolson who is a guest doctor on MedHelp in the Autoimmune forum on the doctor side and see what he thinks. He will be accepting only 30 questions and will be here only through the 10th I believe. Here is the link:
Thanks for asking Dusty; I have had the tsh test normal , i have not been to those specialist i am seeing a gastro doc on Thurs for intestinal issues,,I typed in various symptoms and am pulling at strings that it might be fibro? It just seems like i have been pulling at strings to figure out..In a nutshell the pain is unbearable at times and my neck and upper back will feel tremendous tension as if i can't relax,,,.. when i went for the sleep study the tech asked why my neck appears swollen? (by the way i have obstructive apnea not sure the cause yet)i had a mri of my neck to see if i had disk out i'm not sure if that shows thyroid? i have also had alot of chest pain lately that runs through my arm and causes it to be week,,,.. doesn't last very long though? i guess i need to get this figured out i will try to chat with that doc thanks for your suggestion.
The TSH is only one of many test that need to be run to rule out Thyroid disease. With your description of your swollen neck I would demand further testing. You need to have a Free T4, Free T3 plus the thyroid antibodies tests. You may even ask for an ultrasound of your neck since it seems swollen. You could have Hashimoto's or Grave's disease. It could be in an early stage or as I mentioned before hypoparathyroidism is also a possibility, or you just might have Fibro. I've posted a couple of links from our site for you to read about the diseases just to see if any of it makes sense to you.
Thanks again; I will look into seeing exactly what tests they ran? I hate the fact at my docs i will see a different doc than usual.And i feel as this is a big puzzle usually i will write down symptoms so i wont forget than feel like they will think i am crazy if i say all my symptoms so i will focus on one,.. Maybe i should suck it up and hand them the paper. Or go to another doc,,usually the female doc will say tests are normal and say i need time for myself(i always feel that they think it is in my head)honestly i wish it just was then i could control it but i know what is normal and whats not! Thanks for the support it is needed more than you know!!! It is frightning to feel like this if i knew what it was i could move on and treat it... PS i just got over hepatitus from using too much aceteminthan also. And on heart meds for rapid heartbeats (have mitral prolapse). I hope that i can be support for someone as well.
Hi Dusty; The doc did reply he thought it could be a chronic infection of some sort.... I have had a pelvic infection that would not go away and a tooth infection-I have 3 impacted wisdom teeth ...But my cbc and white blood cells are not elevated???? wouldn't that show any infection plus stool sample...But yet have the bad mucus stool thing?? confused
I just read his response. I am hoping he replies back to you and has some more advice for you. I think patsy10 brought up a good point too about getting tested for Lyme disease. Perhaps you should consider seeing a doctor who treats infectious diseases. He/she would be able to test for Lyme and test for any strange bacteria or infections in your body.
what specialist do you think i should concentrate on a rheumo or neurologist?? Wouldn't my neck mri (looking specifically for disks etc)of showed either the thyroid or inflamation? I'm not happy with my doc he just stuck me on iboprophen for inflamation but didn't go furthur sent me to a gastro for bleeding and mucus, wrote a script for cpap and thats it...(the gastro on the phone said to get off the ibo cuz of bleeding) ugh! no wonder people suffer for so many yrs,..
The MRI won't show any thyroid issues to my knowledge. That test will be specifically looking for abnormalities in your spine and your discs only. I would start with the Rheumatologist if I were you. Many times the Rheumy will send you to the Neurologist if he/she thinks it's warranted. Talk to him or her about what you have discussed here with us and your symptoms and how it has impaired you.
Also, I think your gastro doctor is correct- if you're having stomach issues, the last thing you want to do is take an NSAID that can be hard on your stomach. Perhaps your gastro doc can refer you to a good Rheumy who also treats Fibro? You may want to consider finding a new PCP doctor as well if you are not satisfied with the level of care you are receiving. I have just done the same recently. I was seeing the same PCP for over 15 years and finally switched. I am very happy that I did. I hope this helps you.
Hi; Just wanted to update I went to the gastro doc today ..They said my blood work did show high sed rate,...and inflammation .They want to sonogram my thyroid (ana was high and throat is puffy)this weekend,,, and another colonoscopy..(just had one 2 yrs ago,polyps removed)want to check for inflammation..So something is definetley going on just don't know what?? She is sending me to a rhemotoligist... Hopefully get an answer soon..Frustrating..Thanks for all your help
I am glad to hear you are getting somewhere. I think you are getting close to really getting some answers. A high ANA, sed rate and inflammation does point to something that could possibly be Rheumatic. When do you see the Rheumy? Definitely keep us updated.
hello; i went for the thyroid sonogram yesterday..I should know by Tues or Wed.They think maybe Hashimoto's? I will be getting another colonoscopy in March.(colon polyps removed 2 yrs ago)benign..This time they are suspecting inflammation chrohn's or colotitus? my blood test showed high saccharomyces cerevisiae Iga 35.5? suggestive of chrohn's disease according to lab...IN october my liver enzymes went up to 230 and 117..(they say because of overuse of acteminthan)had severe tooth ache then they put me on codiene with aceteminthan.now is back down.I almost wonder if i am having other bad effects since this all started downhill about the same time..The strange thing is i found out about the liver thing when i went in the er thinking i was having a heartattack? My mris never showed the liver as being large even at those numbers. Somehow evreything is tied into eachother i will make an apt with a rheumotologist soon... I will let you know when the sono of the thyroid is in.Thanks for any suggestions or similar experiences you can share..Ps you can look at the beginning post to see all my symptoms.
Hi, it sounds like you just might be getting some answers. I also had hepatitis but mine was hep C, I treated with interferon and ribavirin and there is no live virus anymore. Many of your symptoms mirror mine with the liver being involved.
I had the colonoscopy due to the mucos and blood, haven't heard back yet about the samples they took.
I have quite often told my PCP what blood tests I want and he writes the script, makes things a little easier. I wanted my vit D level checked and they told me that they usually don't check it but they wrote the script. My level was/is low even tho I take 1400 units.
I also went to a Rheumy and he diagnosed the fibro which my PCP mentioned about 5 years ago.
I honestly think that a lot of MY problems are tied into the hep C and the treatment.
I only wish the best for you and I hope you get a diagnosis soon and remember that we have to be proactive in our health issues. Take care
Hi; Thanks for your reply! My liver enzymes are back to normal after that scare..That's why they think it was the aceteminthan..In Oct.I was taking way too much because of an infected tooth that i have since got removed. I now need to get 3 impacted wisdom teeth removed next month. I am scheduled for March for the colonoscopy. I hope evreything turns out okay with you! I had the same some blood & mucus in stool..My blood work does show high sed rate..(inflammation- iguess i am also positive for the IGa used to determine Chrohn's ) not sure if the intestinal is attached to all this muscle pain and weakness.But the body does crazy things.The people at work must think i am nuts? One minute tooth next liver now colon and sleep apnea & all this pain and fatique.but i know and i'm pretty sure evreyone else on here knows how crazy the body can be .I think it is fibromylagia brought on by infection in the teeth,,?Just guessing but this all advanced to this point around the same time. Keep me posted on your progress as i will mine.. Take care
Hi; Just wanted to update I recieved the thyroid sonogram results and that is normal.... So I'm back to trying to get things figured out? Do you guys have the problem of turning beat red in face and neck?? Like a really bad sunburn that feels hot to the touch? And does fibromyalgia have high sed rates? and high IgA? (inflammation marker appartently) thanks for any info
Hello; Well another update... I went to see my primary docter again a different one..(seems like I constantly see someone different eventhough it is a extremly small docters office:( anyways she wrote me a script to have an ANA,Rheumotoid Facter and a recheck of vitamin d Last test it was only 15, so they put me on 50,000 units of vit d.. for 8 weeks i was supposed to get rechecked, but never did because again another doc..She referred me to find a rheumotologist (just need to find one now in the area) and wrote me a script for celebrax....Have any of you been on that before?? And how was it?? My sleep doc prescribed sleep med for insomnia (of course it is hard to sleep with pain and to top it off i am on cpap machine I haven't noticed any improvement on the machine yet? I will start the celebrax and trazadone this weekend.. I I also got results from blood work for the gastro doc,,,My sed rate is high (31) IgA level is 35.5 high..calcium low,sodium low,mpv low,lymphs low,bun/creatitine high not much though (28)normal is 20.. My gastro doc scheduled me for colonoscopy/endoscope in March because of symptoms extended guts,mucus ,blood stools,abdominal pain...They think Chrohn's??? (IgA test positive for that) So again I wait..... I have been searching and I see that Chrohn's and arthritis or fibro goes hand in hand,,Or do you not get high sed rate with fibro?? My painful muscles/joints lead to weakness in extemities,chest pain,eye twitching,rash and burning hot face with flare ups, feel feverish and very aching when this happens and will get chest pain.. I'm confused and just want answers don't we all? thanks for all the support. I will be there for you all as well .. Take care Jen
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