Unwell with Temperature, Pain and Twitching

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Deutsche

Well-known member
Hi,me again with another issue...I am feeling more and more bad each day. My temperature is around 37,6 C now (don't know in Fahrenheit) despite taking Ibuprofen. Accompanied by very weak feeling. Pain in joints and muscles, right arm and hands have gotten much smaller. strange muscle vibration in the night, especially after exerciss, sometimes scaring whole body vibrating, more intense twitching (for me personally, because I do not twitch very much in general). But no inflammation values in blood, ck level 58 - ok also. Now I am short-breezing. I did not realize by myself, but my doc heard that on the phone immediately. Now I am again on the panic road...could that be from muscles? Could this be a sign of...? I have a strange feeling in my breast. Like pressure towards my throat - hard to explain. It is not like I cannot move my breast. As far as I can say, no slurring, no swallowing issues (for all suffering from this: I had that for a long time. Could not drink liquids any more - got infusions with liquid. But that never came back!), no clinical weakness yet, but perceived weakness and shaking more and more often. Eating tons of food to keep my weight..My docs (the ones who still take me serious) are concererned but clueless about my situation. And that makes me even more afraid....They alter between giving cortison or antibiotics or both...But special bacteria cultures were all negative. So they let me choose..Oh dear. That short breathing drives me nuts now...Any idea, whether this could also be from a muscle/neurological desease??
 
German, you have fever without "inflammation signs" in the blood test, meaning you do not have raised RBC sedimentation rate, probably.if this is right, then you may have thyrotoxicosis (fits fever, loss of weight, general bad feeling and anxiety) and thorough investigation of thyroid (not only blood tests but also MRI, USI etc.). As far as Iunderstand, another possible case of fever without biochemically evident inflammation is hypotalamus (pituitary gland). This needs MRi to see if there is no trauma or whatever else causing malfunctions.Did your doctros explore those possibilities?
 
I'm sorry you are feeling so bad. I have no suggestions but I certainly think Gracely has given some good possibilities. She seems to know what to check for better than the doctors! Good luck, I hope you get some relief soon.
 
Dear Gracely,my hashimoto doc is indeed in great concern and wants to be updated about my situation. She had me measured my thyroid hormones last week (I think due to these thoughts), but they were to low that time. And my neuro indeed wants me to check these pituitary glands, My appt. is at the beginning of december...You are so educated in medical things, it's really amazing!! I think I have no chance to accelerate all those appt. So I have to suffer. And what scares me most is the left arm getting smaller and smaller. Meanwhile both hands went completely numb in the nights. I think because the nerves are not protected from the texture...Thank you both!
 
Oh dear, I just feel myself a bit of House MD team which is not great of course. I am not a doctor but just trying to explore possible causes of unresolved fever on the basis of rather humble bits of knowledge gathered because of my medical translator work. Please do not have illusions that I know more than doctors do, it is not so. I still think that doctors who can see your tests results and you in person and are specifically eductated in the art of diagnostics, would be anyway more efficient in diagnosing than me. Wish you to be diagnosed and properly treated, becasue I understand how hard is your life under such pressing.
 
I am so sorry you are deing with pretty much every scary thing out there, at the same time. I feel for you and wish only answers and relief for you. I personally believe it couldn't not be MND because I have heard that when getting tested, it just can't hide and especially for that long, from all these specialists. I just wish for you to get better...
 
After feeling so bad and sick went to emergency ambulance of hospital...neurologically Checked.all fine..but i am recommended to stay in hospital in another department...now suspected to have sarkoidose...afterxray of lung which was not ok this time..sarkoidose ca also hit nerves and muscles.. i have to wait ....this all is so exhausting...
 
Still in hospital. Suspected dx of sarkoidose not confirmed. Now they send me the mnd expert for new check up. One of the leading ones in Emilyomousey. I have visited him twice...i did not ask for his co nsultation. They decided about it..These are among the hardest hours in my lfe. ....
 
Can't imagine why they would send you back to him, that's not your issue! I guess they are being thorough. This must be very hard. Praying for answers and relief for you.
 
Ok...he left me. He had me walking on toes and heels. Looked at my hand and legs. He discoverde a dent at the side of my lower leg and said this would be very unusual but it is on both side and he would so think it is nature. Ok right is deeper than left but what counts is that it would be both sided. He does still not think it is mnd or other neuromucle desease. Especially as twichtching started over one year ago als would be kicked out. Still no clinical weakness. I asked him whether short breathing can come from neuromuscle desease and he ssaid yes but those cases are rare like colibries. If my mucles react on s.th. autoimmune then it is not his business...i feel not satisfied to be honest. Still no exlanation for my problems...no answers...
 
Looks like you need what is called "consilium" - infectionist, immunologist, endo, maybe other doctors brainstorming your analyses and condition. To be honest I think twitches are not your major problem, as several weeks of fever itself are quite concerning.
 
Dear Gracely,home again....and feeling worse than ever..The hospital recommended me to another one with a rheumatology and a good professor..Now I have to wait until 6th of January. My legs are so weak today, that I can hardly walk. But I feel in general very very sick and shortbreathing...My lung was fine on ct. Xray was an artefact. False shadow..Neuros are all not concerned. als expert just had a small chat with me...not taking my weak feeling serious. But I feel like dying soon...Tommorrow I see a famous immunologist. Hoping hoping hoping...
 
Hi EmilyomouseHave They ruled " All virus " out ? I remember having parvovirus b19 , When my daugther was little , she had A red rush and A week later i had fever and pain in my legs . The fever was on / of for A couple of month and i was very tired and had this burning pain in my legs. I went to my gp Several times and she did an xray of my lunges . Theres was A shadow in my Right lunge but no signs of infection. I had A lot of bloodtests taken and finally it showed up as parvovirus b19. In adults this infection Can be quite " hard " but of course i Would Think that They have checked You for virus.
 
No Bibi, I think they did not check me for any virus yet. Today my lymphedema is back, and I have pain in my pleura. I was at an immunologist who did several tests to see whether I have an immune deficite...If that is the case, there would be a cure...I suffer mostly from my loose of muscles and muscle pain...even the als expert looked several times at my hands...but then saying..no. It is no atrophy...but seems not to be sure. Just about the fact that mnd is ruled out due to time period...But as I told him that I have muscle vibrations he asked me to film it, if it is visible..But to be honest, I don't know whether it is visible. The vibrations always happen in bed...I cannot watch myself. Ok, the twiching during day is visible of course. But too random to film it. It's there and then it is away again....No chance to catch it.
 
Deutsche - tell us more about the lymphedema. Where do you have it? It went away? When did you first get it? Do you do anything to manage it? Do you know why you have it? I have it and thought I was the only one...it happened just before all this bfs, both legs for no known reason unless maybe genetics. I had to undergo a throrough cancer screening, all but my head was checked. Verry stressful and took months to get in with proper specialists. I blame the stress of it for causing the bfs.
 

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