Anyone recognise any of these symptoms

Hello my name is Paul and i am 62 years old. Two years ago whilst i was on an excellent diet and exercising three hours a day and at a weight i hadnt been since i was 18 and i collapsed.
Prior to the collapse i noted my mouth was extremely dry at night and my left foot catching on the ground and a numbness developing between my big and second toe. It felt like my sock was caught up. After five days in hospital they diagnosed me with benign paroxsymal positional vertigo. Which took months to ease off and is another story, However the numbness in my toes spread to the other foot and moved up to the ankles within a few weeks. My feet would go dark blue with the cold. A feeling of weakness spread up my legs , however i dont think there was any loss power, They became rubbery and felt weird. I had to stop driving as i coulndnt work out how hard to press the pedals. I developed fasiculation of the muscle between the thumb and finger, first one hand then the other.The weird weak feeling eventually hit my forearms before spreading to my shoulders and jaw. It felt like a very very mild gbs? from what i read, please correct me if wrong. If i put my arms up they became incredibly tired and i had to drop them. There was overwhelming fatigue like walking under water.
Gradually over a few months i stopped stumbling on uneven ground and was left with the feeling of one heavy boot full of water.
MY brain and spine scans were normal and amazingly so was my emg and nerve conduction.
Two years down the track i have ongoing problems with fatigue, blue feet if cooler weather and cold sensitive fingers which the tips go dark red in the cold or handling freezer foods. All my bloods are unremarkable. I finally had a very brief consult with a neuro last week for the first time and he says small fibre neuropathy predominately but wrote on my blood requests i have peripheral neuropathy. He told me we dont have the tests available in Australia for sfn, but came to the diagnosis with history and examination of my feet and my photos i took of them when dark blue. No treatment, no further appointments necessary.
I also get some hot cold pain sensations, electric jerks , cramps etc but all which i tolerate rather than take meds yet.
Although my Doctor seems reluctant to believe it i believe it has affected my bladder ( I dont have much of a sensation i need to go, my bowel, it felt dead and i think the motility is affected( I now have diverticulitis which i never had before, Also causing erectile dysfunction and anorgasmia and finally gastritis which wont heal.
I am due to look for work soon and it frightens me as i look very well but get so tired and cannot work for long without tiring. Just wondered if any of this sounds familar as my understanding of sfn is it slowly ascends but mine was over weeks and quite rapid. Thanks for reading, kind regards to everyone Paul

Hey Paul, gosh you’ve been through a lot. So after all of this, no treatment?

I recalled a post by @Judmilla just a few weeks back who found out they had idiopathic snf (correct me if I am wrong, Judmilla!). I wonder if you shared similar symptoms in the years leading up to diagnosis?

Yes, CanadianGirl, that was me. I’ve got a lot of the same problems as Paul, but it was a lot slower developing. They wanted to blame it on the (well-controlled) type II diabetes that I’ve had since 2003, but I went armed with documentation proving that the neuropathy was already well-established in 1994, and that my blood sugars were normal going back to 1989. So they reluctantly settled on idiopathic, which is just Latin or Greek for “we don’t know what it is”. They say that diabetic neuropathy is a small fiber neuropathy, and if I hadn’t brought the proof to the contrary, they would say it was diabetic neuropathy. And they say it’s possible that the current state is a combination of diabetic and idiopathic. And yes, I have bladder involvement and bowel involvement. And I have an abnormal gait. in the last three years or so I’ve developed cardiorespiratory symptoms that they were bouncing me around to specialists for, but a complete cardiac workup said my heart is 100% normal. The neurologist says it is probably autonomic neuropathy, which she said “is very common with diabetes”. They just don’t want to give up blaming it on diabetes, do they? My situation is further complicated by long-standing osteoarthritis, plus I had esophageal cancer in 2005, with chemo, radiation and an esophagectomy. Among other things, that surgery involves dragging the stump of the stomach up and sewing it to the stump of the esophagus, and then they sever the vagus nerve as well. So the autonomic dysfunction could be due to the surgery, too.

Paul; some of those symptoms sound a bit more like Reynaud’s Syndrome or possibly cryoglobulinemia. Has anyone mentioned either of those? Or tested for them?

Hello, I have very small knowledge in this field. I was diagnosed with cidp almost two years ago. In this time I was in hospital for 6 times, 1 week every two month. I met there few patients with similar symptoms, not exactly like yours, and there diagnostic was Myastenia Gravis, very rare also. I don’t want to influence you anyway but you can take a look about this. I wish you all the best!

Hi Paul I hope I can be of some help. I was diagnosed with CIDP (chronic inflammatory demyelinating polyneuropathy) almost 17 years ago. It took almost 6 mos to make a definitive diagnosis. I was under the care of the head of General Neurology at Columbia Presbyterian Hospital’s Neurological Center. Finally after 2 hospitalizations for tests electro diagnostic tests finally revealed the disease. At the time I was having great difficulty walking until they began treatment with IVig. Once a regular routine of IV infusions was started I began to get some strength back. I was then put in the care of the head of the Peripheral Neuropathy clinic.
I am an 87 yr old retired dentist with a decent knowledge of the Immune System. I have many of the symptoms that you have and all can be considered auto immune disease. My strong recommendation to you is to get situated at a major teaching hospital that has a strong Neuro. Dept. You have to make the effort to find a Doc who treats neuropathy on a regular basis. IVig which I receive weekly via a port, is considered a first line of treatment. Your bloods should be checked regularly. If your balance is suspect please consider the use of a cane. You should also seriously consider being treated by a physical therapist to keep your muscles in the best possible condition. I don’t know anything about medical care in Australia inasmuch as I live in the suburbs of New York City. If I can be of any help whatsoever please contact me on this board.
As an aside the reason that IVig can be so important is that it floods your blood with new antibodies which replace the old ones your body is producing and are aberrant in that they attack the myelin sheath covering your peripheral nerves slowing down the nerve impulses thus leading to sensory and motor dysfunction. It’s not a cure and has to be repeated, to be determined by your Doc. Good luck and keep us informed.

Thank you all for taking the time to reply. Yes they did a glucose tolerance test on me which was normal. I think the gait disturbance and Blue hands and feet and bowel motility all came on quickly where as the mens issues and bladder sensation has taken a few years to develop
The Gps here dont want to look at auto immune once your bloods come back negative though from what i read it can take years for bloods to change.
Judmilla with regard to Cryoglobulinemia i tested negative.
The neuro i just saw said i have Sfn and its a benign condition, all right for him to say so he doesnt experience what i do. He doesnt want to see me again unless i get more problems. He made no comment on the feet going blue with the cold…Also when i discussed impotence he said he wasnt aware it was an issue with peripheral neuropathy, yet every article you read on line says it is.
So its a wait and see game really, just wondering if it will stay sfn or perhaps progress but i am surprised at how little the Drs know and even the neurologist.
Tooth -fairy my balance is ok again, just one foot goes heavy numb at times or feels claw like. Guess i am lucky so far compared to what some of you go through Regards Paul

Hi! I also have CIDP!..had it for 9yrs now…over the years I have developed Ranaulds in my hands plus really bad dropfoot in my left leg,my left foot drags on the floor which causes me to trip and fall!:pensive: