New sarcoid user

Hi sarcoid people,

My name is Helen and I am 33 years old and about to be diagnosed with an 'unusual' presentation of sarcoid.

My neurologist wants me to have a gallium scan to confirm. Apparently the radioactive gallium attaches to red blood cells which will congruate around areas where the deposits of granuloma to show.

My symptoms started with sensory peripheral neuropathy resulting in left foot drop by Nov 2015. I then was very weak and fatigued and referred to see a neurologist. He completed alsorts of neurological tests, lumbar puncture, mri's etc. All this could not pinpoint anything particular, so some form of autoimmune disease was suspected. I had a course of IVIg and was discharged.

Following this I continued my life with my husband and 2 children of 6 & 2 and went back to work as a nurse working in a discharge team of a very busy hospital. After 2 weeks of being back I had a Bell's palsy and was very concerned then that something was progressing. My consultant said they were not connected and reassured me. He commenced me on iv steroids for for days with a reducing dose to take home. Once discharge I felt fab I was signed off work for 4 weeks to properly get over these episodes. I was walking the children to school/nursery, cooking, cleaning, my house was imaculate and I had lots of energy to walk children to park etc etc.

Once I returned to work my energy levels zapped, my legs became weak I had a constant thirst. My colleagues were concerned with my decline and tracked down my registrar who seen me and admitted me as an urgent case.

I was diagnosed with hypercalcaemia (side effect of sarcoid) one of my blood tests and some protein in my lumbar puncture that also indicated this rare condition. I have had lung X-rays that do not show any deposits. My consultant will not commence steroid treatment until diagnosis is completely confirmed.

As I have had a lose of function of peripheral neuropathy in my good leg and right hand does anybody feel the steroids will work to improve loss of function.

Does anyone have any similar experiences? This whole experience for me has been totally frightening how I have gone from a fit and active 33 year old mother of 2 with a good job to having a permanent disability (foot drop) and the cause of this seems to be sarcoid.

7 Replies

  • I am so sorry you are having all of these problems along with the sarcoidosis Helen. I am only a year new into this and do not have any answers for you. I do know that the steroids have lessened my inflammation and my numbness tingling and pain is more intermittent now then being constant over a year ago. I am thinking it is worth a try the prednisone to see if it will ease the inflammation or whatever is causing this issue. There are a lot of other sarcoidosis sites that are so very helpful. I don't see very many people on this site. I don't know the name of them off him but I will try to do some research as I am using them also. My best wishes to you. Jackie

  • Thank you for your reply Jackie,

    It's comforting to know that there are other people going through this and there is support from people who are living with this condition.

    I'm still sat in my hospital bed at the minute feeling my strength and stamina failing me.

    Yesterday I felt so nauseous that I asked if I could have something for it. Well they gave me iv cyclizine that totally wiped me out I wasn't fit to see my little family. Still feel hungover and rough now.

    I have to wait a week until I get my gammulin scan and he won't give me anything so he don't skew the results. The scan is really clever because the radioactive gamma attaches to your red blood cells and will deposit around where the granuloma's are. So at least I'll know exactly what's affected. My eyes are very red so I think it's also in there.

    Have you had this scan Jackie? Do you know what areas are affected for you?

    Yes could you let me know what other web sites are available?

    Take care

    Helen 💫

  • Hi Helen, I'm so sorry I have not been back here. My husband has been very sick. He has cancer among many other things. He is in the hospital for the last 4 days now and I have stayed with him every day and I am worn out. I just found your message I have not hadAny of those tests and I am not aware of that medicine you had that totally wiped you out. If you could go in to Facebook and type in sarcoidosis and it will give you a list of groups and I am probably signed up for all of them. My best wishes to you and I will do my best to check back again as soon as things settle down here. My best wishes for you to get well quick. Most sincere, Jackie

  • Hi Helen, sorry to hear about your sarcoid. I was diagnosed in 2013 after pneumonia (I did not have a cough at all) just felt lousy with night sweats, poor appetite and could not put one foot in front of the other some days. I was referred to a Thoracic Consultant and after scans, breathing tests etc they found granulomas on my lungs. Not too sure what the diagnosis could be either tb or cancer. I was lucky to have an ebus procedure under sedation and they found I had sarcoidosis when they did a bioposy of the granulomas and found sarcoid. My husband has also been diagnosed but has not had any granulomas. We are monitored regularly but both feel fatigue. I also have a left foot drop which I have had before as I have had three lots of spinal surgery.

    Please keep in touch as I am very interested in your outcome.



  • Hi Helen

    I had dry cough with night sweats and lost almost 7 kg in a months time. Further there was hardly any feeling of hungry and at a stage I required some body's help to get up even from the bed. Initially I was treated for adult primary complex and after one year of medication my another physician observed that even my neighbour won't get TB for the quantum of medicine I consumed. Finally after FNAC, 64 slice scan and biopsy, that is after ruling out that I don't have tuberculosis, cancer, HIV , I was put under medication for Sarcoidosis. Biopsy reveled that it is due to inflammation/infection. I was put on cortico steroid and doing fine now. Weight has improved and dosage of steroid being phased out. My ESR is still 46 and steroid is being administrated to suppress immunity.

  • I have had Sarcoidosis for 20 years now and still fighting it. There is a lot of information on the internet and I found out more from this and other sufferers over the years than from the doctors so suggest you get reading. Good luck.

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