That sinking feeling...
 

I have a diagnosis as Idiopathic PN.
I have had the following symptoms for the past 7 years:
Balance issues / falls
Leg weakness
Decreased temperature sensation
Moderate hand coordination issues
Fatigue
Tremor
Restless Leg Syndrome

But during those years, symptoms had been progressing slowly. That had changed since early 2012, when things have been rapidly declining, and a developing GU/GI range of symptoms that my PCP believes is autonomic in nature.

Now I feel that my situation is going downhill quicker than I thought would happen. My question is this: Have you had a slow progressive / stable PN, that suddenly became worse over the course of a year?

I look forward to your thoughts.

Thank you

Bob

Hi Bob,

Welcome (your post makes you sound rather new).

Many here have experienced improvement through the use of supplements and other therapies. Oral B12 is one of them. But I am not the expert. Others will post here, I am sure, with their excellent recommendations.

Good luck. You are not alone.

Idiopathic neuropathy just means that they do not know what the cause is. Have you ever had DNA blood testing to see if they might be able to come up with a diagnosis instead of idiopathic? Is there a family history of any of your symptoms? Hope you find an answer.

tons of tests, all negative. I am adopted so no family history available. Only tests which were postive was EMG/NCS

Any tests done for CMT? There are over 50 types of it. And plenty of other neuropathies out there.

Hmmmm... your list does not give details of sensory problems.

Most idiopathic patients start with sensory issues.

You have balance, and muscle weakness mostly?

That is another thing entirely. I'd see another doctor and get
another opinion. Also look at your drug list for all conditions.
There might be a culprit there.

I'd find a neuromuscular specialist.

Thanks, I have sensory issues, mostly reduced vibration, sensing cold, and the friendly accompaniment of what feels like, flies, ants and tarantulas crawling up my calves

Enough of your symptoms are similar to mine to make investigating hereditary neuropathy (CMT) worthwhile, as Kitt suggested. And yes, I have undergone periods of rapid deterioration after what seemed like a slow and steady pace. In one case it was precipitated by taking Tricor for high triglycerides. Several medications are highly toxic for CMT.

I began with a clumsy, odd gait as a child, high arches, walking on the outside of my feet. Progressed to numbness in my toes in my 30's which is now up to my thighs. No discernable reflexes. Balance problems, and muscle weakness in both hands and feet and legs. Visible wasting and severe pain in legs. Like you I have no access to family history, but do some research and see if you recognize yourself. Neuologists hate the diagnosis, there is no treatment, but some comfort in knowing what you have.

Best of luck.

Susanne, when did u get diagnosed, and what was the doctor's specialty? (i.e, a neuromuscular?)

bob

I was 47, so it was 4 years ago. I was scared of telling my doctor about the numbness because the only neuropathy I knew of was diabetic and I was terrified of having diabetes. I didnt have any diabetic symptoms or high sugar on blood tests, I was just scared. I developed a very serious infection from a callous on my toe which I didn't notice until it turned black and stinky because I have absolutely no feeling in my feet. The podiatrist cleaned it up, it took several visits and debridements to get rid of the necrotic tissue, but he said I had severe neuropathy and had to see a neurologist. He also said that my previous diagnosis of carpal tunnel was BS, that at my height (6'2") bilateral hand neuropathies should have been a dead give away that something else was wrong. She, my neurologist, was a neuromuscular specialist, but I didn't know that when I picked her out largely at random.

She suspected CMT the minute she saw me walk, but without a family history it remained suspected. Upset about not being able to help me, and concerned about progression since I was relatively young with children at home, she sent me to johns Hopkins for a second opinion. Same abnormal EMG, with a very severe SFN indicated by the skin biopsy. I also had a glucose tolerance test just in case, which scared me but was negative. I had the genetic test for HNPP since i have nerve entrapments all over my hands and arms but it was also negative. I refused, with the agreement of the Hopkins neuro, further genetic testing and a spinal tap, since they both admitted there was no treatment anyway. Good by, good luck, and pain killers for the rest of my life with a progressively crippling condition.

I feel like it really upset the doctors more than me. I have known for a long time that something serious was wrong with my legs, that I would end up in a wheelchair, whatever it was, but doctors like to DO something, and they were both very solicitous but definitely dismissive of me since there was nothing to do. My primary physician handles my pain management and that's it. This isn't as hopeful as a lot of the stories you will read on this forum, but it is important to realize that some neuropathies are like mine, not all respond to lifestyle changes, supplements, positive thinking, etc.

I do walk as much as I can, with hiking poles, to retain some muscle strength, but it is a losing battle. I believe that I can delay the wheelchair, but not avoid it entirely. Last summer I was able to complete an 8 mile hike on level ground. This year I do not think I could do it, but I want to try. My legs buckle more often, the numbness is up to my hips. Two years ago it didn't go past my knees.

I should have added that I have had restless leg syndrome since I was a young child. It is a definite symptom of CMT.