Hello,

I’ve been on a journey for the last 9 months and need ideas on where to go next.

Last August I spent a weekend at a camp walking much more than usual, at the end of the weekend I noticed my ankle (not my foot) but my ankle was swollen with pitting edema that didn’t hurt at first but after a couple of weeks became excruciating. I went to ortho urgent care they thought maybe a stress fx (X-rays showed nothing then they only sent MRI for foot) I have a Norton neuroma that began acting up at same time, likely due to me walking different than usual to compensate for the ankle.

Went to sports med doc that sent me to PT, little response after 8 weeks so after said to just get orthotics and not to see her again (I had been begging to have MRI of ankle in the meantime). PT thought ligament issue anyway.

After she released me I went to podiatrist that fixed the pain with the Morton neuroma with a pad added to my foot, she put me back in cam boot which made things hurt worse. I do have neuropathy but this was not the same pain. I also had noticed loss of function of some of my movement in my foot, can’t bend big toe down but can pull it up, can’t easily do the PT exercises in a fluid way. Several months before the ankle flared up I had joint pain throughout my body from nowhere. Was sent to rheumatologist that did blood testing and since RF and ANA normal they dx the dreaded fibromyalgia. Then sent me to a specialist in functional med that said I don’t have neuropathy (despite the biopsies to prove I do) wanted to put me on SSRI (I get seizures from having had serotonin syndrome in the past if I have too much serotonin even still 16 years later) and he said I shouldn’t see so many specialists. So with the ankle flaring up they said oh well if you just had those tests no reason to repeat them. I should also add I am not yet considered in remission for ITP but had a splenectomy going on 1 and 1/2 years ago and my platelets have been normal as the steroid response was limited and I couldn’t live on 50mg of prednisone. I had a couple of 10 day courses prednisone for the ankle and the first course helped some but second did nothing. 3 different NSAIDs at least made it so I could work even if I’m limping around (I’m a hospice nurse). I got those orthotics and the podiatrists finally was out of ideas and said “I think it’s just your neuropathy but let’s image your ankle and send you to an ankle ortho and see what they say) the MRI showed a splayed peroneus brevus and some hypertrophy of some other part that I don’t remember what it was and the ortho said most people have it as a normal variant and let’s send you back to PT. Then put you back in the boot and send you back to pain management. I have been in pain management since 19 when my neuropathy started. I live at a 6 and this ankle has been at a 9. I’m not wanting meds, I’m wanting an answer and them to make it so I can continue to work and ease the suffering of these patients. Pain management just gave me Cymbalta which helped but I now have myoclonus and sleep problems even taking it in the morning. Guess that’s better than being in tears. But this last week after it being controlled for a few months, the swelling is now not helped with compression socks, the pain is back with a vengeance, I didn’t injure it, it isn’t red or hot, Doppler was negative last year btw, and I can’t get into neuro until June. (After much fighting with the same clinic that did my autonomic testing they finally are seeing me after saying I didn’t have the testing that they did 10 years ago). I also have been waking up most nights drenched in sweat for at least 6 months. Not affecting the sheets but I have to change clothes. Appetite is unchanged. But my right ankle is also starting to hurt I’m guessing it’s compensating for my left ankle being useless right now. If I push on one side of the ankle to see how much edema is there it then transfers the pain to the other side of the joint. It’s strange. The pain goes up my outer aspect of my left shin as well at times. I have many sensitivity to medicines and chemicals, I am on Allegra singulair Flonase and some amino acids my allergist put me on, I have an overactive primary immune system but he didn’t tell me the label. This I think makes it look to others like I’m a med seeker (I don’t even want meds) because I have a lot of allergies. How would you suggest I navigate this and get some definitive answers. It took 9 neurologists to figure out my dysautonomia and neuropathy 10 years ago because either no one had the answers, I didn’t ask the right questions, or they wrote me off. Does neuropathy cause that much swelling in one joint just around the joint itself? Do I just say screw it and go to Mayo? I’m at a supposed top notch medical college being seen and all my providers are in one place. Thanks for reading.

PMH
Autonomic dysreflexia (I’m not paralyzed)
Added 12/7/2008
Seasonal allergies
Scoliosis
Acne
Sinusitis, chronic
Epilepsy
Shift work sleep disorder
Idiopathic small fiber sensory neuropathy
Anxiety
Vitamin D deficiency
Added 3/20/2013
Flushing
Added 4/30/2013
Dizzy
Added 4/30/2013
Lumbago
Added 7/8/2013
Urgency of urination
Added 4/15/2014
Obesity
TMJ (temporomandibular joint syndrome)
Added 3/29/2016
Thrombocytopenia
Added 9/14/2016
Cervicalgia
Added 11/14/2016
Chronic ITP (idiopathic thrombocytopenic purpura)
Added 11/29/2016
Multiple thyroid nodules
Added 1/31/2017
Recurrent major depressive disorder
Added 11/15/2017

Surgical history
Splenectomy
Placement of spinal cord stimulator (for pain due to neuropathy)
Tubal ligation