I am female, 41 yo, non smoker, no medication, previously very fit and healthy.
In 2006 and 2007 I had operations to realign my tibias so that my knees stopped sublaxing. Following the forst operation I had foot drop from a stretched peroneal nerve. It has now resolved and although the nerve is getting through I still have muscle weakness. Following the second operation I had a severe bout of diahorrea and subsequently lost alot of weight. I was very weak all over. I went to physiotherapy and slowly regained my central core strength. After a year I am left with very weak and very noticable atrophied thigh muscles. My physio's will vouch that this is not through a lack of effort or not wanting to use the muscles. It is as though they have switched off. Both feet periodically catch when walking, especially when tired. My bloods are pretty much normal. I am sub clinical hypothyroid which is slowly rising, tsh = 5.8, 7.6, 8.7 within 4 months. My platelet levels are decreasing, Nov 2007 319, April 2008 216 May 2008 167. I had a lumber puncture that showed a low level of glucose ans was such a random result the Doctor has dismissed it as a lab error. I have no response to the scratching of the soles of my feet, although I can feel it - not sure if that is significant or not. I have a 'brisk' reflex in my right knee but everywhere else is a slight response. The MRI of head and neck was normal. I have had two EMG's four months apart and both show some 'myotonic units'. I am due to have a muscle biopsy but told not expecting much from that. I am having difficulty at work with fatigue but have not given in at all. Work have questioned that if nothing is being found then there must be nothing wrong and maybe need to see a counsellor to help my brain switch it all back on again.
I have posted before and this is an update and hoping that one of the very good Doctors here will offer some guidance. I would be really keen to hear of any ideas or views on what this could be and whether anyone esle has been in this position. I know this is not in my head... no one more than me wants to get back to my usual level of fitness.
Firstly, I congratulate you on your efforts to get back to normal. As you say, it is probably not in the head. Have you got your Hemoglobin and blood glucose estimated? Also, it would be helpful if you tell us what your CSF revealed, however abnormal it may appear. Sometimes hypothyroidism itself may cause symptoms similar to your, called as Hypothyroid Myopathy. I suggest you ask your doctor to rule that out. So, all the best with your efforts, donot lose hope and keep us informed.
My CSF was normal except for this very low level of glucose which was abnormal as it does not match my very normal blood glucose reading of 5. Hb is on the very low levelof normal 26. I am only sub clinical hypothyroid and normal free T4's so not sure if that is significant enough to be hypothyroid myopathy. I am not even on any medication for the thyroid.
Has anyone mentioned the possibility of something called CIDP? This is chronic inflammatory demyelinating polyneuropathy, and some of what you said does seem to fit. Not everyone has an elevated protein in their CSF with it. My neuro thinks I may have it which is how I know about it.
On the other hand, your TSH is too high as they now want you around 1.0. You need to be treated, IMO.
Thank you very much for your suggestion. I hope you soon feel better with your CIDP. My Doctor has not even suggested any medication for my thyroid saying it is not high enough to cause any problems. I had a scan on my throat and a tiny cist was found but again not considered necessary of any further investigation or treatment. I have an excellent doctor and neurologist and sure they will figure this out. My concern is that they may not get to the bottomm of it and then I may be left with not knowing whether this will get better, stay the same or get worse.
Can I ask - are you an actual medical doctor? Just curious really. I have looked up hypothyroid myopathy and with many symptoms similiar I have to ask, would this also be possible with someone who is subclinical hypothyroid? Thank you
Sorry to bump this up but can subclinical hypothyroid still cause endocrine myopathy? I am due to have a muscle biopsy and I have been told that a muscle biopsy is not necessary for this type of myopathy.
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