Neurologist recommendation

[markland]

Hello

My husband has recently been diagnosed and has started on Sinemet but it is not helping his terrible leg spasms.

I am looking for a recommendation for a neurologist at one of the London hospitals if anyone can help as I know that he will have to wait months to see a neurologist in Surrey where we live. I am planning to pay privately to see someone first and then see NHS consultant when possible.

Also can anyone who also has bad leg spasms recommend a different drug which is more effective?

He is being told to withdraw from Pramipexole and switch to Sinemet and yet I have read on this site that Pramipexole is used for Parkinsons so I don't get the logic.

We actually went to see a consultant privately about restless leg syndrome but we're told very bluntly that he had Parkinsons disease.

All help would be appreciated as we would rather see a neurologist who has been helpful to Parkinsons patients.

[park_bear]

Pramipexole can cause leg spasms:

healthunlocked.com/rlsuk/po...

[markland in reply to park_bear]

Thanks for the information

[Michel0220]

I find that magnesium helps me with leg spasms but this an anecdotal observation rather than a scientific one.

[pdpatient in reply to Michel0220]

I believe that there's some truth to it. Others have reported similar experiences.

[markland in reply to Michel0220]

Thanks for the help. Sadly we have tried magnesium to no avail.

[pdpatient]

I would like to add to and support park_bear on his suggestion. Pramiprexole is a drug called a dopamine agonist which is quite difficult to deal with although it's usually the first line of defense for most neurologists. Terrible side effects have been observed and reported such as gambling addiction and other types of addictions. Better to stay off the same.

Sinemet does come with many of the same issues, but that's not in the initial stages of development of the disease.

Good luck with everything and I send you and your husband my prayers.

I am sorry that you get to meet up with us under these circumstances but this is a very friendly and helpful club 👍🤗

[markland in reply to pdpatient]

Thanks for your good wishes

[PDWarrior1900]

very sorry to hear about your husband's situation

i know when i used to have terrible leg cramps that standing on my vibrate plate machine for 10 or 20 minutes was a MIRALCE!

Has he tried that yet?

[markland in reply to PDWarrior1900]

Thanks. What is the name of the machine?

[PDWarrior1900 in reply to markland]

strangely, my particular "vibration plate machine" has no company name,... weird, huh?

but just go to Amazon...

I see very good pricing on them...

or Craigslist, eBay, etc

[markland in reply to PDWarrior1900]

Thanks for help

[Rabilo]

check queens sq neurology hospital in london. They have private clinic too. All the movement specialist are fantastic.

[markland]

Thanks. Can you tell me the name of the hospital please?

[Gymsack]

Try calcium to avoid cramps, get him checked for calcium deficiency. Severe leg cramping at early Parkinsons stage , to me is very unusual. I do get severe cramps in early morning if I have slept in and missed first dose. Levodopa and 15 to 20 minutes wait is only thing that will stop it but I am not early stage.

You are correct , get a second opinion . There are other diseases , besides restless leg that it could be. The general rule of thumb is if Levodopa does not help then it is not Parkinsons (some say there are exceptions )

[markland in reply to Gymsack]

Thanks for the advice

[Kat343]

If you have not tried the Magtein form of magnesium, that may help as it supposedly crosses the blood brain barrier. My HwP is now experiencing severe moments of foot contractions during the night where one of both of his feet will contract for a few seconds and its very painful. Our very special chiropractor (specializes in the atlas, C1 adjustments) said today to do the red light therapy at night right before bed (we have 2 Vielight devices) with no other stimulation but music (no tv, computer, etc). Have not tried it yet, but just want to put that out there - hope you can find something that helps SOON.

[markland in reply to Kat343]

Many thanks

[Brazilbutterfly]

I make sure my husband gets his daily calcium/magnesium which seems to help.

[markland]

Many thanks

[justhavefun2]

I know you asked about drugs, but I recently went back to doing water aerobics and my overnight leg cramping has ceased. Maybe the extra stretching is helping. I also used to have toe curling and after I started on C/L years ago that also went away. I hope your husband can find a solution that works for him! Leg cramps are miserable.

[markland in reply to justhavefun2]

Thanks. What us C/L

[justhavefun2 in reply to markland]

Carbidopa-Levodopa is generic brand of Sinemet. I use the abbreviation C/L so as to not type it out all the time. Apologies and all the best to you!

[markland in reply to justhavefun2]

Thanks. Yes that is what he is taking ATM.

[mk2002wi]

You are not alone in your frustration about the length of time it takes to see a neurologist. Took me many months and I got one that needs "work". I feel he is of poor quality. It's 5 months until I can see another one in a bigger city. And I'm in the USA. And, it took the medical system 3 years from my first symptoms to come up with the Parkinson’s diagnosis. My first symptoms were some numbness and tingling in my right hand, an odd sensation in my right arm that felt like my arm didn't belong, if that makes any sense. Then my right leg started dragging. For all I know, I had, or have Lyme disease, as I was definitely exposed to deer ticks. I'm seeking alternatives to the Carbidopa-levodopa they have me on. The neurologist started me on a way too high dosage at first. Started at 25-250 3x day. Had bad dyskinesia. Down now to 10-100 3x.Better, but still get dyskinesia.

Hope you find a good neurologist.

[markland in reply to mk2002wi]

Thanks. We are going to pay privately to see someone at a London hospital . He isn't seeing any response to Carbidopa levedopa either. Hope you get some relief.

[markland in reply to mk2002wi]

Meant to add that it took even longer to diagnose my husband than it did for you. If I hadn't arranged a private appointment he still wouldn't have been diagnosed. Seems that Parkinsons is misunderstood . Best wishes.

[pdpatient in reply to mk2002wi]

The first time we can see a MDS, it does take a few months even if you have the best insurance in the USA. However after the first time I believe it's not so bad. From my experience with COLUMBIA and UCSF AND STANFORD.